Being a Carer

Mental health in lockdown

/ Sarah K Reece / 2 Comments

Every lockdown I hear about folks with psycho social disabilities being abandoned by their support providers. Welcome to an NDIS that is largely informed by people with a disability background, with mental health as a last minute tack on. Yes, maintaining supports for people with high physical needs is obviously essential – people who need support to transition out of bed into their wheelchair, or assisted showering or feeding must be able to access their services. It may be less obvious, but it is just as essential to maintain support for people with high mental health needs! Lockdowns are a highly stressful event with well documented mental health impacts. Our most vulnerable people are of course going to feel this impact even more. I am deeply frustrated by the lack of recognition of how real these needs are and how serious the outcomes can be for people.

As a small provider of support teams I recognise there’s a huge logistical challenge in lockdowns. It’s tempting to ignore all but the most obvious care needs. It’s critically important to make sure mental health is part of this. Here’s a quick run of the process I’ve developed for my team:

Risk Assessments

Each client is assigned to a low, medium, or high risk category for that lockdown. These are specific to the needs of the client for each lockdown, and not a static unchanging category. Low risk clients are those who are well prepared and resourced and highly independent or with excellent in home supports. Children with parents at home who have organised all the needed resources, adults who have excellent independent living skills and only need support with transport or gardening or other non essential tasks are examples of low risk. This assessment is based on contacting each client and their primary support worker, if both agree all is well then halting all in person services for that client is likely the safest response. Continuing in person service provision for these folks will put them at far more risk than halting services. Some low or moderate risk clients will still need supports that can be provided online or over the phone, for example assistance to purchase online supplies, or help to access covid testing if needed.

High risk clients have vulnerable health or mental health needs and/or living circumstances that mean they will need in person supports during the lockdown. Examples of high needs from a mental health perspective include clients who will not eat without support, those who struggle with paranoia or persecution type delusions, and those with high sensitivity to loneliness or perceived abandonment. Just because someone has the physical capacity to feed themselves does not mean they will be able to do this under stress. For these clients a personal safety plan is created and shared with their team. A template of my plans is available here, you are welcome to use this for your own circumstances, it suggests opportunities to engage some of the key mental health impacts of lockdowns according to the current research.

Reduce risk of client to client transmission

Support workers who will be needed for in person support are assigned to one client each. Where possible it’s best practice to try and prevent one worker travelling between multiple clients. Bear in mind that some support workers will also be carers and travelling to support family or others with high care needs in their personal time. Clients with high needs will need a small dedicated team to limit risk of losing staff due to illness or hotspot exposure. Other support workers can remain in reserve to replace any face to face staff who have to isolate themselves. Support workers should attempt to minimise needless transport and perform necessary travel on behalf of vulnerable participants. It’s also very important to ensure participants are receiving updated health advice in a format they can understand – this may be a plain English print out for their fridge, or a morning phone call to check in.

If you have mental health challenges or a trauma history or are supporting someone who does here are a few key support needs and considerations I have found helpful:

Food challenges

Most people with issues around food struggle more during lockdown. There’s many ways to assist depending on what the challenges are and how well you know the person’s specific needs. If they have helpful support from a dietitian or GP they may be able to inform this process A few options might be: shop for supplies of that person’s safe foods, the things they find easiest to eat even when they are stressed. This might not be varied or nutritious but all food getting in and staying down is a positive thing when restriction is an issue. Meal replacement shakes/drinks/supplements may be an important resource. Shared meals can be helpful for those who find social support useful. Distractions in the form of movies, puzzles, conversations, and board games can assist. Company for an hour following meals can assist with preventing purging. Meal planning can support those with lower capacity to plan and manage tasks. Eating to a schedule of 3 meals 3 snacks can assist those who struggle with bingeing or restricting (it sounds counter-intuitive but regular food is a very strong preventative for bingeing). Having meals provided or portioned can assist those who struggle with that aspect. Obviously some of these approaches will be unsuitable or even harmful for some people – tailored support is essential for good outcomes.

Anxiety/Paranoia/Psychosis

Folks who struggle with these issues are likely to have increased difficulty during lockdowns. Anxiety generalises easily so people may express fears about the virus and their loved ones through other seemingly irrational fears or get locked on to concerns that compromise their safety or provision. For example some people who need personal support in showers may suddenly refuse this, or be unable to cope with showering altogether. Issues with neighbours may flare up into huge problems, minor conflicts with family or housemates may become unmanageable. Phobias can become so intense people can’t function, and if paranoia increases too much people may come to fear and reject their team, refusing medical care or food or support.

It’s important not to get too caught up in the expression of fear, but to recognise this is not intentional, and to engage the underlying needs as best as possible. Yes the person may be talking crazy sounding things about being poisoned by the neighbours, but arguing about this is likely to leave them feeling more alone and unsupported, and even afraid that you might be part of that plot. Someone who has become so phobic of birds the house has to stay completely closed up in case they see one through a window may well know on some level that this is irrational, but the brain link to their fight/flight response isn’t something they can think their way out of, and adding shame and embarrassment to the situation rarely helps. The real needs are often about control, territory, and connection. When people feel unsafe they experience and express this in a variety of ways. Any small things that can restore or preserve control, territory and connection can reduce the distress. The sad thing about experiences like psychosis is that they often impact the very things people need to be able to manage them safely, so it falls to us to be aware of this and try to work around it.

Meeting needs for control can be as simple as asking the person to help draft their own safety plan, to decide if they want to cancel the GP or change the appt to telehealth, to invite them to choose a meal plan you can help them shop for. For people with traumatic histories around psychiatric inpatient experiences or residential care, anything that helps their home still feel like a home and not like a formal care environment can help reduce triggers. Be mindful that sometimes simple things like our communication books or weekly roster shouldn’t be on display but digital because of that history. For other people having access to the communication book will help them feel more in control. It’s individual.

This links into territory too, who’s home is this and how safe does this person feel in it? Do they have retreat spots where no one is allowed to disturb them? Are there issues with housemates? Can they change things around to help them feel more in control of the environment? This might as simple as asking them where PPE like masks and sanitiser are kept, or helping them to create a quiet nook in their bedroom where they can hide out and use headphones when things are a bit overwhelming. Some more thoughts about territory here.

Connection is vital, we don’t endorse phobias or delusions as real to us but we do endorse them as very, very real experiences for our clients. We may not see what they are seeing or sensing but they absolutely do, and they have to navigate all the feelings that come with that experience. Validation is incredibly important, as is understanding that people trying to reassure someone their phobia isn’t really harmful, or delusion isn’t real, is actually in it’s own way very confronting and isolating. Read more about my experiences with psychosis here. Maintaining the same team wherever possible, ensuring the team is large enough to cope with a number of people being removed and required to isolate, and wherever possible using a co-design approach to all changes, introductions of new people, new routines, and so on can all contribute to emotional stability and reduced distress.

Self harm

Are there appropriate medical supplies in the home for the clients preferred methods of self harm (burn cream/antiseptic for burns, butterfly stitches for cuts, etc)? Is there access to a local nurse or GP who can assist with any more serious injuries? Mental health informed and non-judgmental vastly preferred! Will this person be safer if access to risky supplies is prevented, or safer if they are not searching for new unfamiliar materials to self harm with? Eg if there are parents providing supervision then reducing access can be very helpful – parents may for example lock away knives. If there is no supervision then reducing access can be risky – people searching for new tools can use items that are far more dangerous. Does this person have alternative options for managing self harm impulses? For example, a grounding kit, ink not blood, Dialectical Behavioral Therapy skills, safe people to contact? Are their support workers and housemates compassionate and informed about self harm, or stressed, confused, scared, or angry? Do they need more information and training? A place to start might be My experience of self harm. We need compassionate and regulated people in support roles, not overwhelmed, horrified, and confused folks. This also goes for our approach to ourselves when we are struggling with these issues.

Confusion

For folks with severe dissociation, dementia, psychosis, and various other challenges the higher stress and disruption of the usual routines can lead to high levels of confusion. This might mean forgetting crucial information, mixing up important lockdown guidelines, missing essential appointments, taking medications inappropriately my mistake, and other errors that can have huge implications. People who are usually able to drive might not be safe to, or those who independently manage their medications might need more scaffolding for the lockdown. Draw on resources from supporting clients with dementia such as whiteboards, alarms, reminders, checklists, and countdown clocks.

Make sure you are checking for higher needs that might be unintentionally concealed, or intentionally hidden by embarrassed clients or those afraid that higher supports might never be reduced down the track. Short periods of more intensive support can be the difference between riding out a tough time and full breakdowns with serious consequences and sometimes much more long term loss of capacity. Again, good relationships, a high sense of safety, and clear communication assist this process.

Insomnia/hypersomnia

Sleep disturbances are really common during times of stress. The latter is disruptive but the former, like food stress, needs to be regarded as a warning sign. For many people it will be unpleasant but reasonably benign, and resolve itself. For some it will become a major problem that can endure over many years – particularly for those with trauma issues that cause hypervigilence. A period of severe sleep deprivation can have a catastrophic impact on people’s cognition, behaviour, and health. People may be unsafe to drive, make judgement errors, experience various forms of dissociation, have disrupted emotional regulation, and have loss of physical coordination similar to being drunk. This can result in a higher rate of home accidents and injuries, poor caregiving and child supervision, self harm and abusive behaviour. Sleep deprivation is a common precursor to episodes of mania, depression, and psychosis for those vulnerable.

When sleep issues are being triggered by a lack of sense of safety, I’ve found it more successful to address that as a priority over ‘sleep hygiene’ responses. This might mean supporting someone to change their bedroom around, increase mess in their home!, or sleep on the couch, to read books over the phone to help someone’s hypervigilent nervous system to calm down, or to help them build a nest in the cupboard to cocoon in.

Depression

For those with severe depression, functioning can be profoundly impacted. Scaffolding can make a major impact for someone in a bad episode who can’t get themselves out of bed, into the shower, or attending to admin and self care needs. Phone calls, prompts, help with routines, alarm reminders, friendly check ins, and visits to help coax folks back into routines and help reduce the spiral of shame, isolation, and overwhelm is really helpful. Normalising the response and reducing the impacts of the initial loss of function can prevent the development of a viscious cycle of neglected tasks causing further stress that increases the depression. There’s many approaches and treatments for depression which is far beyond the scope of this article, but a couple of things to keep in mind are: depression is a normal response to highly stressful life circumstances, depression becomes self reinforcing when it destroys our sense of self worth and connection to our community, and depression can respond well to opportunities to explore and grieve losses, choosing to focus on our values and what gives our lives meaning, and support that helps us still see ourselves as useful, valued, and capable.

Addictions

Folks with addictions are at high risk during lockdowns. It can be counter-intuitive but there’s very real research behind odd sounding decisions such as keeping bottle shops open during lockdowns. Withdrawal without support can be dangerous or for some folks even fatal. Withdrawal can also increase other risks such as domestic violence. So as strange as it may sound, this is actually about risk management and harm minimisation. Do not use a lockdown as an excuse to try to make a person give up or cut down on their addictions.

Safety at Home

Not everyone is safe in their home. Both the environment and the people can present huge risks and lockdown can be a pressure cooker that exacerbates those. It’s crucial not to make assumptions about the home. It’s been a long standing issue that there are limited or sometimes no homelessness support services for people with disabilities, based on a naive assumption that people with disabilities are always well cared for. The reality is that people with some forms of disabilities are simply more likely to be abused in situations and homes they can’t leave. For other forms such as mental illness we’re more likely than non disabled folks to wind up homeless or in prison. In all instances we’re at higher risk of being harmed. We are also sometimes the folks who harm others.

One of the biggest privileges of being a carer or disability support worker (carers are unpaid people in our personal lives, support workers are staff paid to be there) is our high level of access to people’s lives. Where a psychologist has to make sense of a person’s circumstances in an hour a fortnight, filtered through that person’s perspectives, or a GP has to understand at times very complex interplays in health outcomes for patients in 10 minutes a month, we have vastly more access. When I am working with someone in their home 10 hours a week for 6 months, I have a depth of knowledge about them and their circumstances. All that knowledge can be utilised to create highly individualised responses to challenges such as lockdowns. This is where the NDIS approach excels. Where it tends to fall down is the lack of utilising that knowledge beyond one carer or worker. Without a team who make time to pair up the front line worker knowledge with management bigger picture systems/public health/service design knowledge we get a disconnect. Management make calls that make sense in a big picture but can so utterly fail to fit an individual client it can do harm. And excellent front line staff can get caught between their personal knowledge and the guidelines of their work, or left to fend for themselves without the team support needed to get good sustainable outcomes in complex and intense situations.

One of the principles behind all these approaches is called trauma informed care and they apply both to those of us with trauma histories and those without. They are also universal in that they are just as important to keep in mind for staff, families, carers, and the clients. Sleep deprived staff can’t be their best, and some staff are in highly vulnerable and challenging circumstances with uncertain work hours, high responsibilities at home, and loss of income during lockdowns. Excellent care of people with disabilities doesn’t happen in contexts of burnt out carers and exploited staff. Understanding the risks of this kind of work, which are largely relational/emotional and rarely well addressed by OHS&W myopic focus on physical health risks, can help us to identify and address the things that cause common issues for excellent staff such as struggling to switch off after work when they are worried about a client, feeling unheard and unsupported when they have concerns, working outside of paid hours and outside of policy guidelines alone to meet the genuine needs of clients they are worried about, and being abused by clients who have control over their work hours or firing them. Promoting resilience is about understanding these contexts and being able to tailor services to support appropriate self care for clients and staff. A few thoughts about that in Self care and a myth of crisis mode, and crisis mode and being under pressure.

Hope there’s some helpful food for thought here for you or the folks you care for. Lockdowns don’t impact us all equally, they have a far greater impact on some of our most vulnerable people, and those of us with mental health issues are commonly being overlooked in rushed and inadequate risk assessments. This is a horrible reflection of poor planning and lack of familiarity with mental health and it causes needless distress and risks to many people. If you are in that situation I hope you feel able to advocate for yourself or your client or loved one, and please do reach out beyond your service providers if they have shut down services and you are in need. There are online groups on social media such as facebook where people find independent support workers, and a host of online platforms such as Mable. If you are in any kind of online support group associated with your disability many of those people will have a lot of experience and service provider recommendations. Sometimes you just need a small rejig of your current services to include a good lockdown plan and a team leader who can coordinate staff for you, or a little bit of training around trauma informed care or whatever your specific needs are. Mental illness shouldn’t be the tack on to the end of the disability approach, the impacts are just as real and the needs are just as valid.

Be safe and best wishes.

Where I’m going in 2020

/ Sarah K Reece / Leave a comment

I’ve just arrived safely in Melbourne for the LGBTIQA+ “Better Together” conference. (Say hello if you’re coming too) I’m tired and excited and really looking forward to it and meeting all the other amazing folks.

Image description: smiling person with short hair and a bright blue shirt with the image of a kitten asleep under a book and the slogan “Curl up with a good book”.

I have Rose to thank for the cool t-shirt. I’ll be away for 5 days and my heart aches knowing the nights will probably be tough for Poppy. I, on the other hand will probably get a bit more sleep while I’m away. Parenting dilemmas!

ID person in a blue shirt and a child in a yellow shirt tendering hugging each other

It’s been a full on couple of months. Massive bushfires have been destroying huge areas of Australia. It’s an unprecedented disaster with the largest evacuations we’ve ever experienced. The losses are staggering. Some folks are in the thick of it, while those like me who are lucky to be safe are watching with horror and confronting survivor guilt and vicarious trauma. Helping out through donations and community support eases the helplessness and is a small balm to the fury and grief. Sometimes it’s big things, others it’s smaller gestures like taking fruit to the local wildlife carers or joining in a working bee for a local damaged farm. Anything helps to unfreeze, to ease the impact of months of bad news and horrifying casualties.

If you’re feeling paralysed, silent and distraught like I’ve been, you might find it helpful to look for something small you can do and do it. Look for good news, for people’s kindness, and share that too. Walk away from it at times to build your capacity to stay engaged and not burn out.

A lot of people are in terrible pain, facing life threatening conditions, or handling thousands of burnt animals. These are all high risk for trauma, and the survivor guilt of those of us who are lucky can lead us to torture ourselves as if more suffering would somehow help. This is part of vicarious trauma, and things that help with this are connection with community, breaks from it, humor, and keeping a clear sense of responsibility.

It is not my fault, I do not deserve either my good fortune or to be punished. I am a better ally and supporter when I’m not overwhelmed.

The other major focus for me has been my work and studies. I’ve been in an intense process of wrapping up projects and studies and launching new ones.

I’ve completed my grad cert in public health with mostly high distinctions. The mentoring program with Sally Curtis has started and been full of invaluable learning already.

I’ve started in two new LGBTIQA+ representative positions, one on the Consumer board with the Southern Adelaide Local Health Network (the hospitals, rehab facilities and so on). The second with the Freelance Jungle as an admin on the team which supports a 5,800+ online group of Australian and New Zealand freelancers. I’ve been a member and then patron of the group for a couple of years, and it’s a fantastic resource with a great focus on mental health and inclusion. The Better Together conference will help me understand both the needs and resources of the wider community.

Consulting and community development work has been so satisfying last year with a creative health project in prisons with SHINE SA and a peer based research project about systems change for people living with chronic illness with TACSI. I was so pleased to support these, they were both work I’m very proud of and look forward to sharing more about.

With face painting I’ve been getting more work from councils and organisations aligned with my focus around diversity and inclusion, such as schools for autistic kids, or queer events, which I’m very happy about.

I’ve launched a whole new arm of my business, providing independent support work for folks through the NDIS, with a special focus on mental health and diversity. It’s going very well and I’ve found that I love it even more than I anticipated. Being able to cone alongside people in their lives and homes and provide personal peer based support that is therapeutic but not ‘therapy’ is simply wonderful. Like a doula it’s a flexible mix of practical and emotional support, looking towards bigger goals but also very present in the moment.

It’s very similar to the group work I used to do in mental health services, such as facilitating the hearing voices group. I’m part of a small community of practice with a professional organiser and a handyman, and I’m setting up supervision and a network of resources. I’ve been extremely busy with it which was a bit unexpected – it’s taken off very quickly and I’m largely booked already.

I’m also booked to deliver a new series of local creative workshops which I’ll share more about shortly.

My work life is all coming together under an umbrella of creativity and diversity. I’m very passionate about it and excited to watch it grow in 2020. I’m putting applications in for further part time studies to continue to develop my skills in this area, and looking forward to getting back in the studio sometime to pick back up my current project there.

Thank you all for your encouragement and support, it’s taken me awhile to find my niche but I’m incredibly happy to be doing what I am, and feeling very aligned with the values and quality that links my different business areas together. 🧡 If I can support you or your project in some way, get in touch and let’s talk.

Parenting with Trauma

/ Sarah K Reece / Leave a comment

Having our whole family sick together is an exercise in the logistics of rationing and portioning a tiny amount of energy to extract the maximum benefit. If I take her for an hour late tonight, then you do the morning, I’ll get you a nap at noon then you take her to the park for two hours so I can work on my assignment… The shifting priorities of dishes, doctors, meals, laundry, and mental health. It’s considerably more exhausting than being sick without kids, largely because of the difficulty of getting enough sleep to properly recover.

Monday Poppy and I went into the city. Rose had important appointments and Poppy was full of restless toddler energy. We had an argument on the bus about her not biting me which concluded with her screaming while strapped into her pram and me not making eye contact with a bus load of strangers. She got her own back by refusing to fall asleep for her afternoon nap. Usually she’ll snuggle down in her ‘cave’ made by covering the pram with a cloth, and knock off. That day she leaned as far forwards as her pram seatbelt would let her to fight sleep. 4 times she gently drifted off anyway as I paced around Rundle Mall rocking and circling the buskers. Each time she’d slip sideways as sleep relaxed her, clonking her head on the frame of the pram and waking up with a howl. Gently tipping the pram up evoked rage rather than sleep, and the fifth time she started to fall asleep I stopped and tried to gently settle her back which cued 20 minutes of hysteria.

I thought she might fall asleep in the art gallery but unfortunately that was the end of the whole idea. She talked to the other patrons, wanted to know all about the art, and once we found the kid’s studio space spent a happy hour cutting a sheet of paper into very tiny pieces.

The studio was set up to invite self portraits, with mirrors and oil pastels. This was mine:

I was glad of the space, it’s the most at home I’ve felt in the gallery.

I’ve realized that PTSD has interrupted our usually very calm parenting approach. Kids this age can be intense, they have huge feelings, test boundaries, and have way more energy than seems sensible. Poppy is fearless, explorative, passionate, creative, and stubborn. Generally Rose and I navigate these traits patiently and with appreciation of their positive aspects. But when she hurts us deliberately we’ve both struggled and the conflict has been charged and difficult to resolve. We’ve been worried about what it means and stressed by our own responses. I in particular lose patience and get angry, but Poppy isn’t easily intimidated which leaves me in a bind where I either behave in more frightening ways until she’s cowed and takes me seriously, or I find another way of approaching this. It speaks to the heart of parenting approaches to obedience and discipline. Do children follow instructions because they are frightened of us, or of the consequences? Or because they are connected to us and trust us? Is it appropriate to scare your child? If so, when and how much? Are boundaries about anger or love? Is breaking the rules or pushing the boundaries about immaturity, defiance, conflicting needs, forgetfulness (it’s easy to over estimate the memory capacity of a small child), or something else?

I’ve been starting to do a bit more reading on parenting her age group and it occurred to me that Rose and I are generally excellent at not taking difficult behavior personally, setting boundaries with warmth, and redirecting troubling behaviors. So when Poppy was getting into constant trouble for climbing furniture in the house, she now has a climbing frame outside for her to monkey around on. But when she hurts us there’s no such framing. We see no positive aspect to such behavior, no legitimate need looking for expression. We talk instead about her being mean, we privately discuss her sensitivity to our stress, her restlessness, her trying to get our attention. We’re troubled by a normal child behavior and framing it as lack of empathy. It’s triggering, evoking memories of being hurt by others and we both move into threat responses. Rose tends to freeze and withdraw, I get angry.

It occurred to me recently we’re misframing the behavior due to our histories. Most children this age want to roughhouse. Wrestling and tumbling and play fighting is a normal developmental behavior. Engaged with care it’s a place for learning about how to hold back and not hurt each other, how to apologise and caretake when accidents happen, and it satisfies the touch hunger and intense energy of very young children. Learning how to wind down into calmness following rough play is a key part of regulating such excitable and energetic kids.

Last night when Poppy started to get rough with Rose who was crashed out on the couch with a migraine, I didn’t get charged. I chose to see her inappropriate behavior as a need for rough housing and set a boundary with patience rather than frustration. I told her Mamma was sick and could only have gentle play around her. When Poppy kept being rough I removed her to the bedroom not as punishment but as an appropriate location for rough play. I gently with her permission threw her onto the bed, threw a big stuffed lion at her and told her this was where the fierce and grouchy creatures play. She was thrilled. She ran growling at me to the edge of the bed, waited for me to put my hand in the centre of her chest, then braced herself for me to gently push her back, screaming with laughter.

Later that night with Rose asleep and me exhausted on the couch with Poppy, she started to rough play again and I forbade her from getting on the couch with me. For the first time she was easily redirected into quiet play and spend a calm hour making complicated meals with her toy food instead.

There’s no problem with her empathy, Poppy is an incredibly affectionate and loving child. She’s not unusually aggressive or showing signs of attachment damage or deprivation. In mislabeling her normal needs as something that disturbed us, we introduced a charge into our relationship that she gravitated towards. Kids do this without knowing why, they can sense it and it’s irresistible. It’s why they do mad things like grin at an adult who’s already at the end of their rope and angry with them. They are still getting a sense of their own power in the world and what they can and can’t do. Navigating our own trauma as parents is about recognizing blind spots like this, paying attention to threat responses needlessly activated, and prioritizing basic needs like sleep, connection, and companionship so we function as best we can. For me at the moment on bad days I’m dealing with chronic irritability and low grade suicidality. Sleep deprivation and feeling isolated turn my world black. Over and over in a thousand little ways we choose safety together, celebrate freedom and autonomy, look for loving ways to speak about the unspeakable things, and link into the world around us. Without our wider networks of friends, family, therapists, without kids rooms in art galleries, and foodbank, and doctors who see trauma survivors rather than welfare bludgers, we couldn’t do this. But together there is so much strength, sufficient grace. Enough to let us all grow.

Bagpipes for lungs

/ Sarah K Reece / 1 Comment

I’d like to be updating you on my my projects, but it’s just my health. I got half way to the studio today before having a huge asthma attack. I had to choose between going to the doctor, the hospital, or home for my inhaler, or pulling over and calling an ambulance. Not easy! I started to go to the doctor, then changed my mind and came home. I found I could breathe provided I did shallow breaths through my nose. Rose met me at the door with an inhaler and we got the next appointment with a GP. He’s changed my antibiotics to a different type and said the ongoing infection is triggering severe asthma. So I’m now on a stack of new meds and a nebuliser. It’s going to be a fun night of waking every 3 hours to dose me, Rose has her hands full with me and Poppy to look after, and there’s the constant vague worry of trying to decide when it’s time for hospital. My chest aches and when I breathe I sound like a kitten attacking a bagpipe.

But, I’ve got a soft bed, Netflix, the cuddliest bug around, and hopefully I’ll be feeling better in a couple of days. Fingers crossed.

I’m so glad I’d already recently decided I can’t pull off a primary income for my family (at the moment). This time last year Rose was in hospital with a chest infection. My family has a lot of extra needs. I simply can’t check out for as many hours a week as a primary income requires. But I can focus on income streams where I can shine even when unwell or on call as a carer. But what I can do is take the pressure off a bit, earn enough to keep my studio open, help with medical costs, afford my shrink. It’s not what I was hoping. But it’s a lot better than banging my head against a brick wall every week. At some point you just have to adapt! It hurts but it’s also taking a lot of pressure off me. I’ve sold four artworks this week, booked two face paint and glitter tattoo gigs, and things are going well despite coughing up a lung. I still have my art residency with SHINE SA and feel a great sense of belonging with that community. A career doesn’t have to be primary to count. It’s isolation that does so much of the harm. I was thinking of the years I’ve spent hanging around mental health organisations, and how it’s been within a sexual health organisation I’ve finally found a genuine understanding of diversity, and a sense of being valued. I’ve got art exhibitions planned and some in the works, and as soon as I’m better I’m going to finish and show you this beautiful handmade book I’ve been working on. I feel terrible but I still feel part of life and that’s so precious to me. ❤

Transformational Breakdown

/ Sarah K Reece / 4 Comments

Hi everyone, I have so many half written posts in drafts at the moment it’s ridiculous. 🙄 Life has been weird lately. My psychologist called it ‘a transformational breakdown’. Haha. That means it feels like we’re having a breakdown, giving birth, and blooming at all the same time.

One night this week we got very cranky while making dinner, drank a bottle of cider, switched to kids who felt stupidly ill because of the alcohol (multiplicity can be dumb that way) then found the couch, a blanket, and Star Trek Next Gen. There’s been a great deal of being very grown up lately and frankly it’s not all that good for us. One of the funky things about our system is that we can kind of shift into whoever is most needed. So if or family need someone unafraid to take a spider out of the house without making fun of them, we can be that. And if someone needs a whole lotta nurturing we’re pretty good at that too. Or research, or arty days in the backyard, or being firm about boundaries or whatever. There’s some things none of us are good at (coughadmincough) but we can adapt and respond to what’s needed of us, at least in personal relationships.

The secret to making this work is kinda the same as the secret to making parenting work for anyone – looking for that Venn diagram overlap area of where your needs and the needs of the kids overlap. If you just meet their needs all the time you burn out. If you just meet your own you’ve got a kid in a 10 hr old nappy. But there’s a kind of dance to figuring out if we all go to the library on Tuesday that will give the eldest time to get books for her homework, we can borrow a new Charli and Lola for the little one and I can pick up the book of knitting patterns and start Grandma’s present, the kids need to get out of the house but I’m really tired so I’ll take them to the playground next to my friends that’s fully fenced so I don’t need to chase them and see if she wants to catch up for coffee…

Of course it can’t all be overlap. Sometimes you do things simply because they need to be done, like dental appointments. Sometimes it is about one person’s needs – there’s no other reason you’d go to a dance by 6 years olds or listen to someone learning to play the recorder. 🙂 There also comes a point where we just need to do our own thing. We lived alone by choice for ages because being hooked into roles and having switches triggered by people around us was tiring and overwhelming. When you’re busy turning into what you think people around you need (or will like, or love) it’s hard to have a sense of self identity, to know who you are or what your own needs are. That’s true of everyone, although perhaps in our case a little more blunt. Sometimes you need to have nobody need you and to just see who turns up. Systems are self balancing, to the best of their ability, they switch out who they think needs to be out. My family are never going to need my poet but we need them out because they take care of our soul and renew our spirit.

We can’t live life with one part forwards all the time without losing out on so much of the world. No one can look at the world through one pair of eyes, one archetype, forever, without missing so much. And while it’s a gift to be able to tune in to what someone else needs and turn into it for them, it’s also a kind of cage if not attended to with some care. Sometimes you need to annoy or even embarrass each other, to be weird, different, inconvenient, and entirely moved upon your own tides. Blue lipstick days. I’m here for you but I’m not here for you, owned by you, of you, made to fit your empty spaces. I’m stranger by far than your dream of a perfect partner, parent, friend, guru.

I don’t buy the dichotomy we’re presented with – that I can be the best ever carer or I can care for myself. To choose between tuning in to another’s needs or my own. We do not recover well when our carers are in crisis and suffering. We are bound in their cages and suffer with them. If I wish to be deeply attuned, my own heart calls too. My life calls too. It’s not one or the other. It’s to listen or to not listen.

“Nothing has a stronger influence psychologically on their environment and especially on their children than the unlived life of the parent.” Jung

So, I am home, finishing EOFY business admin, having meltdowns, having awful fights with Rose because we’re stressed and broke, feeling trapped in the domestic role I never wanted. Hanging washing and more washing and having strange panics about the cleanliness of the house as if attention to the kitchen counters has become a metaphor for how loved I feel, whether my needs are also attended to. I read blogs about autism and books about giftedness and articles about eating disorders and synthesise it all into a treatment program that is working brilliantly, and at night I lie awake hating myself for not being at work.

There’s hope for us. Today we took a break from the hideous interminable admin to chat with a friendly editor and mentor about our multiplicity book and imposter syndrome and how a blog feels generally manageable but a book is something more formal, official, tangible and we can’t quite transition, can’t quite stop researching and let it be a thing, incomplete and unresolved but good enough as it is. She laughed and we laughed and there was more common ground than difference. She reminded me a little of my late friend Leanne, who was also an editor and would have loved this project, if I’d been brave enough to tell her we were multiple while she was still alive.

We are doing well. I am hysterically exhausted. Star is thriving, Rose has been terribly ill with migraine and ear infection but is finally recovering, Poppy is currently unwell with a chest infection and I’m getting very little sleep.

I have withdrawn from work but I’m also hard at work on a new business model and I think I’ve finally cracked something I can actually do for the next 6 months while I’m also on call and caring so much… which is profoundly exciting.

And I’m still working on a new exhibition for later this year. Holding onto bits of my own stuff and upskilling rapidly in how to run a household with multiple disabilities and challenges in a way that everyone gets what they need – including me. We are still here, still together, holding on. Still kind, still in love, still hanging in there, still believing in better days.

I have no idea what’s going to emerge, but I hope the damn ‘breakdown’ part eases up soon.

Sometimes vulnerability is the way back

/ Sarah K Reece / 3 Comments

I’ve had a difficult couple of weeks. Stepping away from work has plunged me into terrible depression. Carer burnout kicks in fast, in the form of long mornings frozen in bed, unable to start my day, long crying jags, flashing irritation, suppressed resentment, and profound self loathing. Fear, frustration, and hopeless despair struggle for the upper hand. I’m caught by the chilling awareness of my own broken places, the insanity of my phantom terrors. Just as surely as I know the things I fear are not real, I am seized by them. Obsessed with them. Simultaneously tortured, and humiliated by my torture.

I believe in welfare, believe in care for the poor, opportunities for those of us with disabilities, I believe in dignity. Yet I am drawn helpless, over and over again into a false but compelling sense of my own failure. I am home taking care of my beautiful girls, yet without the prospect of work and career I feel worthless beyond redemption. I had my chance and I’ve ruined it. I’ve let down everyone who’s ever helped me. I have no excuse for such chronic failure and underachievement.

In darker moments I believe everyone I know is secretly disgusted and embarrassed by me. I am in anguish trying to prove I am worthy, that I have tried hard, that I am not a lazy, selfish, useless bludger. The pain is hard to describe, it’s searing, like a hot brand across my face. It’s deep into my soul. It’s a frighteningly powerful delusion.

I’d not thought of it that way before this last week. I’ve turned my mind to a serious challenge – understand the territory Star is lost in, and devise a way out for her. And we’ve done it. Setting ourselves the task of reading a book or 12 articles about autism or eating disorders a day, we’ve absorbed enough to tailor a treatment that’s so far worked spectacularly well. I am so relieved I can’t put it into words. The sheer joy of watching the colour come back to her checks and sparkle to her eyes is magic.

And instead of proud of myself I am devoured by self hate for quitting work, for being poor, for needing support. I’ve never thought of myself as delusional before, although I understand that it’s how thinking works. We all construct tiny models of reality in our minds, none of them vast or complex enough to capture the real thing. We are all deluded. And like all delusions, knowing it’s false isn’t reassuring, it’s just frightening and painful to have been so captured by something that isn’t even real. It’s a very lonely place to be tortured by your own mind.

We’ve been reaching out more than we usually do, sharing more than we usually share. And it’s helping. Also spending time with friends helps me box back up the dangerous whirlpool of thoughts that snares me. Don’t think about work, don’t try to problem solve money or career. In company I find it easier to compartmentalise it. It gives me breathing room.

In vulnerability I seem to be letting out some of the poison. There’s a kind of awkward confession to it. Having friends share their own madness with me, offering reassurance without expecting that to fix it is healing. Finding a way to put words to my terror of being judged by family and friends and feeling (not seeing because I can’t bear to look but feeling) them wince in pain from the ‘couldn’t be further from the truth’ madness that has me standing on cliffs, running from invisible nightmares, changes something in me, slowly. If the reality checking is sensitive and loving it helps. We know this from psychosis and this process feels exactly like that one to me. I’ve been here before in other ways, not beliefs but senses tangling my inner and outer worlds. The impossible dual truth I have to find a way to hold in my mind: it’s not real, but it’s real to me.

It’s not real that my friend loathe me, that I’m a useless failure, that I’m lazy, not trying hard enough, pathetic, a disappointment. It’s not true and I know this. Yet it’s profoundly true to me, and that must be acknowledged too. Knowing it’s not real doesn’t make it go away.

I’ve shared my distress with friends and family, unpicking it despite the insanity of it. The more I show to safe people, the less it bleeds. There’s no need to tell me how crazy this is, that doesn’t ease it. But being safe to be crazy in front of, that’s a balm when your mind is on fire. I know it’s not real, hold me anyway. Hold me. I’m in so much pain. Hold me.

Friends share their own madness, the terrible shame of poverty, disability, or loss. I am less alone, not the only one on fire. Everyone burns somewhere in the night.

Last week a younger member of our system shared her name with a close friend – the first person apart from Rose who knows her name. We tried this once before, different part, with our therapist. It felt like being shot in the chest. A kind of death. This felt nothing like that. It felt like planting a new flower in a garden. Natural, simple, simply the next step. No one was shot, no one panicked. One step closer to a life that doesn’t feel like hiding in plain sight, hoping for closeness while holding everyone back. Each step brings us closer back to our self. We get windows of time with no fire or pain. Time like normal time where we can breathe and plan and live. The darkness retreats to the edges of our life.

We have a new psychologist and we’re talking about things long forbidden. Not trauma but something for us more vulnerable and unspeakable – giftedness. The potential and the vulnerability of being gifted, smart, capable, and utterly different. Repulsed by elitism and afraid of others’ discomfort and envy we’ve refused to even think about it most of our life. Now we’re reading about people who are strange like we are strange, people who can write at a PhD level but can’t make it through an undergrad program. We’ve opened the box and are using the words and into this unfamiliar space comes grace and gentleness. My terrible fear: that being smart means I should have figured out work and shouldn’t be on welfare, is gently tipped over. Not only is it okay to be smart and need support, being talented itself can be a difficulty for which you need support. I find it easy to do things other find hard, and very much the reverse. I thrive with intellectual challenges and emotional and creative expression. I die without them. The very thing that caused me problems applying for jobs (advised to downplay academic achievements, remove training from my resume, constantly told I’m overqualified despite having no qualifications) is a difference that brings its own problems. Most forms of diversity operate in practice as a disability. I’ve walked around for years with my wings bound, trying to hide what I can do so people will be friends with me and not hate me. If I switch the word gifted for anything else, say, multiple, queer, invisible illness, chronic pain, mental illness, I can taste how sad that is, how much it hurts, how concealment breeds shame.

We steer our ship by desperate, painful questions, ‘why are we the way we are?’ ‘What do we need to thrive?’ ‘Is it okay that we are on welfare?’ For the first time in 10 years, we can sometimes believe that yes, it is okay. We have done our best, done well, not failed, not let anyone down. We are okay. It’s okay that we need support. We are okay just as we are.

Star is having rough time

/ Sarah K Reece / 2 Comments

It’s long past time I did an update about Star. It’s not easy to write and this is about the 5th draft I’ve worked on. First – the good news. We have had the first stable week in 9 months, since I quit work, pulled Star out of school, and started an intensive treatment 10 days ago. She has responded to it magnificently, we are already seeing improvements and are ecstatic to have found the right track at last. We have a team of support personally and professionally and we will continue to refine the approach over the next few months of recovery.

The knee injury last year started a mental health decline for Star that we have struggled to stop. She faced multiple challenges across many life areas – busting up with her boyfriend who went on to date the girl who injured her and then denied it. Having her reputation harmed by a boy who lied about her. Being ‘slut shamed’ by a group of guys who bullied her. School went from being her safe place and haven to a misery. Her mental health disintegrated and she found it harder and harder to eat, drink, and look after herself. We wound up in medical crisis with chronic dehydration and lack of food, the start of purging, warning signs of heart problems, disrupted sleep, mood, thinking, and memory. We tried lots of approaches which didn’t work, or didn’t work enough, or even made things worse.

The approach that is working is called Family Based Treatment (FBT). It’s intense and at times incredibly stressful. Star is with someone at all times, and required to eat 3 meals, 3 snacks, and drink 6 cups of liquid every day. Sometimes that is pretty easy and sometimes it takes everything.

We have bounced around the public mental health system, through emergency departments, ACIS, SEDS, a number of possible diagnoses and various specialists using the money originally fund raised for her knee surgery. We are making progress on the jigsaw puzzle of how we got to this level of crisis and what to do about it. There’s a number of diagnoses being explored to help us develop the best approach. It is looking likely that Star is autistic – something often missed in girls because it presents very differently to boys. The chronic strain of trying to cope with and hide differences such as her sensitivity to noise, difficulty with change, and a very literal approach to communication has taken a toll on her mental health. We are currently in the process of formal diagnosis with a specialist psychologist.

She is also likely dealing with a type of restricting eating/feeding disorder called Avoidant Restrictive Food Intake Disorder (ARFIDS) which in her case means her sensory issues with with things like the texture of food have led to huge food and fluid aversions. Most of us can make ourselves eat or drink something we don’t like every now and again. In Star’s case her aversions have been getting much worse over time, and after a while it simply becomes impossible to make yourself eat and drink when you find it revolting and distressing. We are working with a team of people to help tailor the Family Based Treatment around these issues and hopefully she will not just become more medically and psychologically stable, but we will also be able to help her desensitise so that the whole process of eating is much easier and she can be back in control of it herself. Our backup plan is inpatient treatment in a hospital interstate. We are also digging into her long history of digestive issues (she was premmie and very unwell as a child) and gathering scattered medical records to try and understand these issues better. It may be that something such as a food allergy has been missed which is causing chronic pain and nausea. The more we know the better we can tailor the treatment.

Eating disorders and restricting are often very difficult to understand, for the person who is struggling with it as well as others who don’t know what it feels like. There are a lot of myths and misinformation out there which make life a lot harder for everyone. Star is not merely being stubborn or in a power struggle with us. Star has a strong needle phobia and yet at one point recently was submitting to a blood test in the emergency dept rather than drink a sip of water – it is that powerful and that hard for her at times.

I have had to overhaul a lot of my parenting approaches and go back to a basic principle of ‘do what works’. Our gentle trauma informed care approach has had to be modified to fit a very authoritarian ‘I know better than you what you need right now’ approach as the starvation has a severe impact on judgment. Watching Star sit in medical appointments apparently indifferent to the health risks has been chilling. And so far the signs are all extremely promising. We are seeing significant improvements for Star already. She has worked incredibly hard – all meals and drinks taken in and no purging. We are seeing signs of our bright bubbly girl again.

It is not Star’s fault she has struggled with this so much – that sounds so obvious and yet when faced with someone who seems simply stubbornly unwilling to take a sip of water, it’s hard to remember that no one chooses to have an eating disorder. She is a brilliant, diligent, caring young woman, and devoted sister to Poppy. It has been a roller-coaster for the past few months and I expect it will be more the next few too. But right now, the signs are good that we are on the path out of this dark time in her life.

Endurance

/ Sarah K Reece / 1 Comment

I have lost my bounce back after too many crises this week. I am tired and angry and depressed. Every member of my family has been in crisis or the ER at least once, and my sleep has been badly interrupted.

Yesterday, Rose was cooking dinner with her broken/damaged ankle and using a chair to sit at the stove. She tipped a pot of boiling water and spaghetti into the sink. Some of the water caught in a bowl in the sink. Poppy climbed the chair like lightning and dunked her hand in the bowl of boiling water.

So, I sat in a cold bath in my underwear for 20 minutes with her, nursing and keeping a hose of cool water running into her burnt hand while she cried and fought me, screaming ‘no’ and trying to hide her hand from the water. It was very hard to hold her still without bruising her wrist or arm, and I found the best approach was to chase her hand with the hose and let the cool water run down her arm over it.

I hate having to do that, holding her down, no time to soothe her into complying, over riding her desperate attempts to protect herself. There’s a ball of pain and rage in me today that has nowhere to go.

Ambulance to the hospital for assessment and then home the same night. We were very lucky. She’d closed her hand so tightly the inside of it was barely burned and the outside was red and a bit swollen but nothing serious.

My nerves are shot. I want to cry, scream, shake, and throw up. I also want some quiet time to myself, maybe in a long bath, and about 6 hours more sleep.

I have nipple thrush again. Nursing feels like stabbing hot needles into my nipple. There was also a bit of a bacterial infection in one, it’s taking a long time to heal.

Some weeks are marathons, endurance tests. Can you get through them without discharging the stress in destructive ways? Eating everything/not eating/starting fights/self harm/insomnia/self medication… Whatever. The stress goes somewhere.

What helps reset when there are no reserve left to draw on, no spoons at the back of the cupboard?

Hand over the baby or walk away. Last night I was at the end of my tether with a worked up baby not sleeping at 1am. I dumped her on Rose’s lap with a movie and went to bed to sleep.

Connection and validation. We feel so alone in our dark hours. My future turns black and depression sets in. I feel trapped, doomed, and too miserable to even cry. I have to force myself to drag my focus away from my future and into now. What do I need right now? What do I need to do right now? Hang the washing. Eat something. Put out the fire.

Humour is an excellent remedy for self pity and taking life too seriously. A comedy or a mad friend are balm.

Sex or masturbation at the right moment can signal the end of crisis and a calming back to yourself or your relationship. Like a ship coming back to harbor or a bird to the nest.

Finding a way to scream. In my old life I would sometimes park somewhere undisturbed, wind up the windows, and scream. I’m crowded now and rarely have that chance. Finding a balance between discharging emotion without frightening the family – big feeling are normal. Write, draw, paint. Cry in the shower. Explain what’s going on and why, don’t make it a secret and don’t make them feel frightened or responsible for it. We feel the intensity of the horror ending whether it happened or not. Our bodies and minds react similarly to tragedy as they do to a near miss. Culturally we have less support for the time we need to process, but the feelings are the just the same. Denied, we will have to numb and discharge then in covert ways that often do harm. Set them a place at the table.

Yesterday I was calm, nurturing, pragmatic, and focused. Today I am rattled, angry, scared and despairing. It won’t last forever. This is not the future, not the new normal. Stay present in the moment. Listen to the pain. Be part of it.

Places to rest

/ Sarah K Reece / 3 Comments

It’s 5am. I can’t sleep. I have terrible vertigo and hives all over my body. I’ve been reading blog posts by Jenny Lawson and Will Wheaton about depression and anxiety and I’m curled up in tears and feeling less crushing alone in my black pit than I have in days. I’m really, really tired. I’ve been trying so hard to find a way through this godawful smog in my head, looking for hope like a starving person, doing my best to counter the black rain of failure and despair, yearning with everything in me to be able to feel the kindness and love people are giving me. Sometimes I can, for an hour or two. Often I can’t. I want to so badly, I do everything I can to hear and receive and take in and believe, but I’m on the other side of a wall. I don’t mean to be. I don’t want to be. I promise I’m trying, but it’s bigger than me. All the want in the world isn’t making it go away.

Reading tears in rain by Will Wheaton, I felt a sense of relief. That feeling like a failure and being a failure are not the same thing. That people who have successful careers also feel the crushing insecurity I’m struggling with. I’ve collected my box of art prints for the walkathon on Sunday and I think they’re beautiful, and at the same time there’s a kind of violent rejection of them, bile in my throat, fury and exposure and loathing and a desire to destroy them, to burn down all the tiny dreams that are still breaking my heart, still leaving me vulnerable to this feeling of failure, this sense of not ever being good enough. Quivering with distress I step back from them and try to breathe.

Yesterday morning I had terrible vertigo, I was crying out and holding onto the bed because the room was flipping around me like a car being tumbled down a cliff. Rose got me a vomit bag and cold water to sip, then held me tight and sang to be until I went back to sleep.

Last night I filled her water bottle and got her a vomit bag when the flashbacks got bad, held her close and sang to her until she fell asleep. Nights are hardest for her, mornings for me. We’re limping along together. How much I love her.

Two days ago we took a friends kids to the show together and it was a beautiful day, all day. We spent the whole day on toddler time, moving gently, lots of rest, lots of snacks. We got stuck with a half hour wait for the train at the end of the night and each took a girl to sing her to sleep. Rose with the 7 year old cuddled up and dozing under her arm, me with the little one in a sling pacing slowly around them. Each of us looking at the other with stars in our eyes. A quiet place, in the night between trains. No panic attacks and hardly any flashbacks that day.

I can’t beat it from inside. I watch for the windows when it’s less and do what I can then, take in what I can. I’m so tired, and so tired of feeling guilty and responsible. It’s a bit of cruel joke to feel so awful and feel worse about failing to stop myself feeling so awful. I don’t think I’m going to make this better, just breathe inside it, don’t destroy anything, and wait to heal. I’ll bloom again.

It’s not my fault, right? I don’t think it’s my fault. I didn’t mean it. I’d stop if I could. I’d make it all better if I could. I’m trying. And trying to find places I can rest from all the trying.

Jude Blooms

/ Sarah K Reece / Leave a comment

image

Jude, the rose that Rose and I bought on the day of our engagement, has bloomed. He’s so beautiful.

We’re still here. It’s been a long week. I think the downward spiral has arrested. We spent Wednesday night in the ER because Rose was suffering chest pain – almost certainly muscle strain because of her extremely painful flashbacks, but you can never be too careful with sudden chest pain so in we went and they kept us all night doing tests. She got the all clear at 7am. I slept for a couple of hours in the van out the front of the hospital while she napped in a dark corner of the ward.

We’re breaking the new, devastating patterns, with help. Rose has a new trauma therapist on board, I’ve been reading up on Focusing and holding onto my people’s belief in me as a decent person. There are still very hard hours in every day, but at no point in the past two days did I feel like I was dying. I managed a full day of college today, and started a new oil painting tonight, despite some pretty intense anxiety and stress. Art as business is not doing kind things to my head. Last night I went for a late night walk with Zoe and found the world shifted and poetry came back to me.

Dropping the ball like this means a juggling act to keep up with those responsibilities I haven’t dropped. I’ve got major preparation work to do for a stall in a week and I’m worried about it. I am still giving talks here and there – they’re stressful but also like small lifelines for me currently – feeling of use is the strongest antidote to feeling like I’m dying.

We’re limping on together. When she’s happy, she shines. I love her to bits.

Holding the Fort

/ Sarah K Reece / 3 Comments

Rose is rough, I am rough. I’m holding the fort, for myself and with her too. Just holding on.

We’re swimming in trauma reactions and broken bits of our hearts. Deep wounds and deep grief. PTSD is incredibly hard, very unfair. It exposes when we most need protecting, makes us tremble with fear when we most need comforting, turns the world dark when we most need the light.

I’m trying to find a way through the stories – that this is real but also that the fear it brings with it – that this is permanent, is not real. There’s such a tangled web of truths and lies and fears it’s hard to find a way through. I find myself falling with relief back into the stories where mental illness is compared with physical – for all the problems with those analogies they also fit and give some shape to the pain we’re in, some way to make room for the suffering and argue for understanding. My poor love is devastated with flashbacks and I find myself debating whether I’d say ptsd or epileptic fit if I needed to explain why we needed help in public to a stranger… It’s debilitating and I can’t navigate the complexities of what has happened to us any more, I’m back to needing the basics of something I can fit in a sentence, something I can scrape clear of the rot and find a place to stand on. Illness. Injury. Whatever. A real thing, a powerful thing, that wishing or trying hard does not make go away. We are dealing with a thing that is bigger than us, and unfair, and very hard, and we are doing it the best we can and each day hoping tomorrow may be better.

And yet, as I drove up the freeway today, looking for a way to pass an hour without the darkness obliterating us both, I felt that knot of pain in me, the thing in my throat I can’t breath around, the indefinable thing that is and is not pain or fear or grief or any thing I can put a word to… just some kind of deep hurt that I can only recoil from – something unbearable. Which is bizarre to me, because I’ve been through so much that was unbearable. So much worse than this! And alone, and in agony, without hope – I’ve been here before and yet this is a new hell, unfamiliar, and I’m without assurance that I’ll come through it. I can’t feel that.

I wondered for a moment what it would feel like if I stopped doing all this to try and ‘get better’ or feel better, if I stopped the self care, the patience, the determination, all the ways I was approaching this pain, and let it be instead. Instead, in fact, made it welcome. And the knot came undone, in my throat. I could breathe for a moment, I was in pain but it wasn’t beyond bearing any more. It just hurt. I didn’t have to run from it or bind it up or try to heal it. I could just be with it. Recovery never looks the way people talk about it. Tonight, I’m feeling the black rain falling under my skin. I’m patient and mostly I’m holding the fort. Some moments, I slip into the slime and under the water I can hear the sound of my dreams dying.

Some moments I read blog posts like Celebrating my blog from earlier this year, and come across lines like “I’m actually starting to take some positive feedback on board for the first time since I was a child. I can see clearly what I’ve been doing all these years with this work.” and the contrast is so great it’s almost unbearable. How did I lose this? How completely I have lost it. Only the memories haunt me.

I have spoken with a few close friends lately about all the losses I’ve faced in the past few months, particularly around my business. So many wonderful things have been cancelled or rescheduled or not come to pass, none of which I can really talk about. I thought I was ready, and to the sound of enthusiasm and support and a sense of community, I’ve jumped. I tried to fly and instead I’ve fallen. Each loss or dead end or deferred hope alone was manageable, but my world has been full of them lately, and I simply can’t buffer them, not in my situation. Everything has an impact in my world, financially, and on hope and energy. I rolled with the punches for the first few, but somewhere back 10 losses ago, I lost key things I need to keep going and didn’t realise yet until there was no more world beneath my feet and I was falling into a dark place.

I am trying to send cards or letters to anyone who has supported me and I have managed one so far, which I nearly threw up with stress to do. So vulnerable, nerves scraped raw and heart broken. I simply do not understand why anyone would support me in any way, let alone a stranger or near stranger send me money. I want to understand it but right now I simply can’t process that what I’ve done has helped anyone or that people might wish to be as madly generous to me as at times I’ve been to others. It’s a simple equation I know, but I can’t make it come out right in my mind. I hope it will again.

I was talking to someone kind the other day and when I listed all the losses, one beside the other, of the past few months, they were shocked. “Deep grief” they said to me. “Of course you are worn out, that’s such a lot to deal with, and such a shock when things seemed to be going so well!” Shock. Could that be the reason the sun seems dark? The reason that people telling me, over and over, that I’m okay, that I count, that I’m enough, and that I’ve done some good in the world simply doesn’t make sense to me? Is this how shock feels on the inside?

“Stop asking what’s wrong with you!” one friend has said to me – “of course you’re struggling, it’s been such a hard year! You can’t take hits like that and not need a break.” And I think of life cycles and cycles of energy and of day and night and life and death and needing to stop and retreat and weep sometimes to find that joy in life again. I think of going on without stopping through one loss and then the next and the one after, still smiling and still hoping and still wringing hope from my heart while the politeness became and mask that slipped and gouged into me and my heart choked.

“Deep grief” I’ve written on my wrist in permanent marker, to remind me – this is why it hurts so much. There’s a real reason, even if it doesn’t make sense in my head. I’m not just broken or crazy or doomed. It will heal. I will see the light again. And this thing that feels unbearable, I’ll find a way to live with, like I have all the others, right. Right?

For now, holding the fort.

Broken and Loved

/ Sarah K Reece / 2 Comments

Precious, lovely Rose is going through a rough time. She’s been tangled in a bad depression since Tamlorn died. There’s some days that are better than others, but the bad days are very hard right now. If could, I’d sweep her up and squeeze all the darkness out of her, the deep pain, the dread, the despair, the exhaustion and fear that maybe life will never feel better again. It’s wonderful that I’m in a good place right now, because both of us being in misery is very hard. But it has its own pain for her too, a fear of holding me back, a sense of failing. Complicated grief, with deep sense of brokenness.

I can’t make it better, but I can make a space for her where she doesn’t need to hold up the sky or live up to expectations, or be worthy. Together, we can make our home a refuge.

Yesterday was a bad day. I wanted to give her some token she could carry with her, through all the dark hours. So I made this memory locket. I gave her one last year with little crystals in it to represent her family – her, and me, and 6 for the little babies who have died unborn. I broke it accidentally when trying to place a little charm in it that didn’t fit. So for her birthday this year, I replaced it with a new shiny one. I was going throw the old one away but her talk of brokenness made me see the possibilities in it. For those of you who aren’t familiar with memory lockets, they have a little window on both sides, giving them a front and reverse side. I used water colours and ink to create this little artwork, you can flip it back and forward in your hand to see each side.

She loved it. She doesn’t have to believe it. It doesn’t take away the pain. But it’s something. There’s a kind of peace there.

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Grieving after suicide

/ Sarah K Reece / 2 Comments

I received this heartbreaking anonymous comment on a blog post I wrote a while ago called “Caring for someone who’s suicidal”

I cared for someone who was chronically suicidal and failed to protect them adequately. During a very short time of being left alone, while acting like he was feeling well, he did end up hanging himself and died. How do I reconcile my feelings of failing him? How do I ever find peace in his passing when I feel responsible for letting him be alone for any amount of time?

I sat with it for a few days trying to think of what to say. It’s really hard when you don’t know the person or the context, what they’re being told or finding particularly hard or helpful. I came up with this, and thought I would share it here for all the rest of us who are struggling with guilt and loss:

I’m so sorry to hear that. How do we find peace in something so tragic? I don’t know if anyone has told you that sometimes people work hard to protect us from their pain, they hide it and we are deceived. We question everything after they’ve gone, trying to work out if there were warning signs we missed and what we might have done. I don’t know if anyone has told you it’s not your fault, or if you are so sick of hearing that because it doesn’t make you feel any better. How do we live with the guilt and sense of failure of losing someone we loved? Is there any peace to be found?

Sometimes when we feel guilty we don’t even feel like we have the right to grieve. We are numb, or we hate ourselves, or we carry a weight around inside that is nearly impossible to breathe around.

It’s okay to grieve hard. It’s also okay to put them down from time to time, to lay them to rest and give yourself time to breathe and feel and laugh again. It’s okay to sit down with that sense of failure and look it hard in the face, very hard, and accept that this is part of what it is to love people, part of what it is to be human. There’s no peace to be found in this kind of violent loss, and yet there is a kind of peace in coming to terms with that, learning how to hold the pain and the conflict so it doesn’t kill us.

He didn’t die unloved. That’s a precious thing. I wish it was more powerful, so powerful that it saved all of us. But it’s still deeply meaningful. That’s a failure that’s not yours. You did care, and you did protect them, probably many times, through many dark nights. Sometimes we are not powerful enough to make the world be as it should be. To bring justice, truth, hope, light. We are small and mortal and life is large and some of it is brutal. It’s hard to forgive ourselves for not being able to do what our hearts so desire, to heal all the sick children and feed all the hungry people and give hope to those who can’t find their own. We are mortal, human, we face the darkness with love, and sometimes it is not enough.

So what now? You carry a darkness of your own now, a place where hope dims and pain waits like an ocean. You meet it with love and honesty. Reach out to people – some will not be able to talk with you or bear that pain, but some will. They will remind you you are not alone, that many of us have found our limits and grieve what we cannot change. Keep his memory alive but find ways and times to put down the searing pain and weight of his life. You carried him for a time, you will carry his name in your heart forever. But hearts are not made to be graves, there must be joy and new love, there must be spring again after the black winter when you are ready.

Much love xxx

PTSD friendly bedroom

/ Sarah K Reece / Leave a comment

Rose and I rearranged the house over the weekend. PTSD trauma stuff often has the same settle and flare pattern as chronic illness, and there’s a flare lately which is killing sleep. So, it’s a good time to work on the sleeping space.

I had my art studio set up in the master bedroom of my unit, and a queen size bed stuffed into the small room. Unfortunately this meant the bed was pushed against a wall, so whoever slept that side had to clamber over the other one to get in and out. We swapped sleeping sides depending on who was feeling the most fragile about feeling trapped. Now we’ve got the reverse, the bed in the master room with space on three sides for leaping in and out, and my studio table in the small room. It’s a brilliant change and is making tough nights just a little easier.

We also get to open the widow in this room as it faces the front of the house – the other room faces the back and Zoe destroys those screens when there’s thunder and she panics in the yard. A cool breeze during trauma stuff is super welcome, as is being able to lie in bed and look out at the garden instead of into a shed.

There’s not enough room in the smaller room for all my art supplies, so our bedroom has shelves of brushes and turps, which is also helping. Sometimes if trauma has a link to a particular room it helps a lot to do things that make the space feel really different. So it’s not a straight bedroom, it’s a bedroom-art-studio with paints in the drawers and ink paintings on the walls.

There’s still nightmares and distress and broken sleep. But these gestures help a little, in between them there’s content mornings reading in bed with the cats. And the fresh realisation that the patterns and arrangement of your life exists for you, if it’s hurting instead of helping you don’t just have to grit your teeth and struggle. However unconventional it may be, you find something that works for you. There’s things you can’t change, and things you can.

Awesome Quote – Self Care

/ Sarah K Reece / 2 Comments

Sometimes someone else says something to me that just clicks. Like a bell ringing deep in my chest, there’s a sense of connection to something I needed to hear. It will often stay with me for days, sometimes even years, and get woven into my complex personal philosophy of life, or trauma recovery, or community building, or whatever other framework I’m currently working on.

This one was by a friend and fellow peer worker with DID, who like me works a lot with other multiples. She was sharing how sometimes people get frustrated that she is able to function in the world – she has a home and a long term relationship and a job and all those things that both give and require stability. For some of us with DID, these can seem like impossible dreams. She said to me one of the things she tells them, if it’s appropriate is:

I can do what I do, because I spend a minimum of 3 hours a day on self care. When you do 3 hours of self care a day, you too will be able to do these things.

This resonated.

On one level, both she and I know it’s not this simple. Bad luck, abusive relationships, sickness, homelessness, and so on can all strip any person of the capacity to work full time or do many other things that need a lot of sustained energy and emotional stability. There’s more to recovery than self care, there’s also things like community, opportunities, and a decent dose of luck. Self care, like self love, often needs to be done in a context – we are better at loving ourselves when we are loved by others, and when we see others loving themselves too. Sometimes the first goal of self care is to find or create some spaces where we can care for ourselves without being attacked or belittled.

But on another level, this idea about self care boils down a whole stack of complex concepts to something incredibly simple. Are you getting what you need to function? Are you sabotaging yourself? Are you neglecting yourself? Are you trying to run on empty? Do you even know what you need? Are you waiting for someone else to do it? Do you wait until you crash and burn before being caring? Do you look after yourself, with your specific and unique needs, a lot, every single day? How do you expect to function if you don’t?

It was a powerful reminder. I have big dreams. I have big expectations of myself. I need to match them with a powerful commitment to looking after myself. That can’t be self care that would work for someone else. It can’t be punitive, traumatising, or harsh. It needs to genuinely be the unique things that support me. The kind of care and devotion I have learned to give to my pets and garden, applied to me. It may not be easy, but on one level it’s stunningly simple.

Finding life

/ Sarah K Reece / Leave a comment

In the middle of a hot week here. Today reached higher than 40C,  and tomorrow is forecast the same. Rose and I had a weird, fractious day, but ended it down at the beach, swimming in the shallows in the dark and watching the moon rise. They are so precious, times like this.

I had a good appointment with my psychologist earlier this week, and I realised that in caring for Rose I’d dropped and forgotten all the work we’d been doing lately on self care. The sense of being connected to my own inner wisdom was gone, no intuition guiding my choices, no small voices speaking of deep soul needs. I’d become locked into my roles, feeling exhausted and in chronic pain. It was like feeling the walls close in about me, trapped in a box that was shrinking every day. Focusing more and more energy on Rose (not necessarily in a way that she enjoyed) as I became caught in that most common of caring binds: ‘If I can just make her well, then I’ll be able to get some of my needs met.’ I’ve watched family members burn half their lives away trying to do just that.

I came out of the appointment remembering that my journey is just as important, and that Rose neither wants nor needs a frantic carer driving her into directions that may not be right for her. She needs a gentle nurse and friend, who is still invested in their own life and heart so she is free to care for her own also.

Suddenly that tiny airless box blew open in my mind. The railway tracks were gone, the limits were gone. I felt free, free to call Rose and apologise, free to do anything I wished with the afternoon, to engage it in any way I chose. Where there had been stoic endurance of a trap, there was now freedom to explore what might be possible. My intuition was back, and my joy. The small voices were back and the ear to hear them with.

It’s a strange thing, life. We find it and lose it and find it, all over again.

Relationships and trauma

/ Sarah K Reece / Leave a comment

One member of a relationship with a trauma background is a challenge. For the non-trauma partner, there is the hurdle of trying to understand and connect with experiences and reactions that are difficult to relate to. Applying the kind of personal wisdom that helps you get through less extreme situations, such as ‘just get on with it’ can cause a lot of stress for people who are struggling with severe after affects of major trauma. There’s two languages being spoken and a lot of work has to be done to get the translation working well and calm the anxieties of both parties. The person with the trauma background often feels ashamed, worried they are too much hard work, scared to trust, scared of being left, worried they’re making a big fuss about nothing, scared of turning their partner off, or of being pressured, that being vulnerable will engender disgust, or that being cared for will make them weak… The non-trauma partner often has anxieties such as wondering if their partner will ever come back from this world of trauma reactions, scared of saying or doing the wrong thing and triggering them, scared of not being strong enough to handle what they’re going through, scared of getting stuck having to care for them, anxious about their moodiness, unpredictability, mania, depression, or temper, anxious about leaning on them too much for day to day issues, and so on. Both partners can easily feel very alone, misunderstood, unsupported, under pressure, and afraid. It takes love, commitment, and skill to navigate complex trauma. I talk about this more in Supporting someone after Trauma.

Two of the biggest issues I observe about this kind of relationship is the difficulty communicating – eg. If I say to a friend who is a fellow trauma survivor or has a mental illness that I’ve had a rough week – they usually get what that means. We’re speaking the same language. Outside of that world, I find I have to spell things out much more strongly. To other friends I may have to directly explain that I’ve been in a self-harm crisis all week and haven’t left the house, or indeed, my bed. The other major issue I see a lot is the risk of the carer dynamic. Having a relationship polarise into the well one and the sick one, the strong/weak, the giver/receiver, the provider/needy can be very destructive for both people. That’s not to say that caring for a partner in distress is not a deeply beautiful and loving act. But rather that those dynamics come with risks that need to be navigated. I talk about this more in Caring for someone who’s suicidal.

Having said that, these relationships can be powerfully strong. The person with the trauma background learns to communicate about their needs and experiences, and has the experience of developing trust, being comforted, and having someone walk with them through their pain. The person without the trauma background learns the nuances of trauma language, how to be with someone in a very painful and vulnerable place, learns to connect more deeply in that very privileged space. These bonds can be strong, having worked hard to build language and connection and safety and fairness, powerful healing and hope can be created.

There’s another kind of relationship with different challenges, and that is where both members have a trauma background (or to a certain extent, a mental illness). Survivor/survivor pairings are not uncommon, and while some issues remain the same – such as feeling alone, others are quite different. I’ve been with my girlfriend for over three months now and it’s been an intensive time of sharing, learning, and finding ways through obstacles. We both have trauma histories. At times, those histories are in the far distant past. At other times, they are painfully present through flashbacks, nightmares, body memories, sensitivity to triggers, and so on. There are advantages in that there is a more common shared language. There’s less work to try and explain what these things are or what they feel like. There’s also more role swapping between who cares and who receives care depending on whose need is greatest at the time. But with this compatibility comes other risks – both are wounded people with needs and limitations. Sometimes the particular vulnerabilities create a painful feedback loop where nightmares in one trigger nightmares in the other, where dissociation in one feeds dissociation in the other and so on. Sometimes both parties are more comfortable giving than receiving care, or vice versa, and struggle to develop skills across both roles. Sometimes competitive comparisons of trauma lead to one person being invalidated and silenced because their experiences are not seen as significant. Sometimes the trauma bond is so intense two hurt people merge into one enmeshed person and neither keep growing back into whole separate people. Sometimes the needs brought into the relationship exceed the capabilities of the relationship. There’s risks.

A big part of the key of what seems to be working for us is being aware that there are a lot of ways our relationship could founder, and talking about them. We know that love is essential but also insufficient. There needs to be enough skills, mental health, and support also. We know that we cannot be ‘enough’ for each other, we need outside supports – friends, professional support. The brutal reality is that with trauma comes limitations. There are times we cannot be there for each other. We are going to let each other down. But there are also skills. People survive different kinds of trauma by developing different skills. Those of us who are more fortunate have a good match between our innate talents and the kinds of trauma we were subjected to. In my case, I’m sensitive in relationships. I read people well. I’m good at helping stressed people to feel safer. (this isn’t some kind of superpower and certainly doesn’t work with everyone) I’m a good communicator. The very history that leaves me with the limitations and vulnerabilities that make it more likely my close relationships will fail, also leaves with me the kinds of skills and capabilities that strengthen and support relationships. Survivor/survivor relationships can also work very well, with deep connections and strength and humility and respect.

We can’t know that our relationship will work out, we can only gently and lovingly build good foundations and try to create safe exits if things become dangerous or destructive. We talk of the future, about hopes and dreams together. We also talk about how to break up the least traumatically if we need to, how to ask for time apart, how to help during a bad night, what our biggest triggers are, who else we have permission to talk about each others past with, how to get through if we’re both in a bad space. It’s not a guarantee, but here and now it’s creating something beautiful and meaningful. There’s safety, awareness, freedom, and love. Trauma takes a lot away from all of us, but there’s still hope for our dreams and things we can do to make that hope stronger.

Supporting someone after trauma

/ Sarah K Reece / 1 Comment

I get asked this question from time to time, often by distressed family members after something terrible has happened to someone they care about, occasionally by concerned mental health staff wanting to better support some of the people they see in their work. It’s quite heartbreaking to witness someone’s anguish in the aftermath of trauma and one of the most common responses we have is to feel terribly helpless.

That feeling is based on the reality that we cannot change that something awful has happened. We cannot reduce the losses, take away the pain, or suffer it on their behalf. We are limited in what we can do. But we are not actually helpless. Research and experience shows over and over again that many traumatised people are equally, or even more, traumatised and distressed by the way other people react to them than they are by the original trauma. One of the most powerful examples of this I’ve come across is in Victor Frankl’s Man’s Search for Meaning. People who had survived the Nazi camps and were at last free were devastated to have so many people in their community react indifferently to their suffering. Many people’s attitude was one of denial, along the lines of ‘so what, we’ve been in a war too you know’. People who had been holding on, craving freedom and ecstatic to get out of their horrific circumstances were crushed by these attitudes.

How we respond to and support someone after trauma can have a profound impact on their lives. When I have been in serious trouble, reaching someone on Lifeline who speaks kindly to me, or having someone in my life who makes time to listen compassionately to me has helped keep my heart safe. So one of the most important things you can do when supporting someone, is to make room for that feeling of helplessness. Accept it, ignore it, and don’t let it drive you into discouragement or into trying to ‘fix’ them.

Control
What a traumatised person has lost is their control. Whatever it is that happened, they were not able to prevent it. They might have been able to escape, to fight, to react well, to protect themselves, but they couldn’t stop the situation happening in the first place -whether it was a flood, assault, or car accident. The more they were able to maintain some control in the situation, often the less challenging their recovery will be. To be made to feel utterly helpless and completely vulnerable has a profound impact on people’s sense of being in control of their own lives. Most traumatised people are very sensitive to issues around control, whether they are hypersensitive to losing it even in the smallest of ways, or whether they have collapsed into defeat and cannot summon the hope to direct any aspect of their lives.

Sensitivity to this area is really important, especially because in our zeal to help and protect someone, it is really easy to accidentally disempower them even further. We may be furious at someone who has hurt them, and insist that they take the matter to court – taking away their choice. We may start to determine what they can and can’t do, what might be too risky. It is very common for victims of sexual assault to be put under tremendous pressure to see a counsellor, by worried friends and family who do not understand that this pressure is part of the problem. Supporting the person to regain a sense of being in some control in their own lives is really important. It will help if you ask them what they want and explore options with them. It will help if you share your opinion and perspective but do not try to impose it. It will help if you continue to treat them as if they are capable of running their own life – even if you are worried about them. You cannot know the best recovery path for them. Wherever possible control should be restored to the person.

Safety
Safety is another critical area that traumatised people often struggle with. This issue is twofold – actually doing whatever needs to happen to make sure the person is safe, and also trying to support the process of regaining a sense of safety emotionally. Badly traumatised people can carry this feeling of not being safe into all areas of their lives. This can be really frustrating for you to watch, it’s easy to see how irrational some of these fears are – but the problem is that the traumatised person usually already knows this and feels stressed and humiliated by it. A good rule of thumb is that whatever can be adapted to easily, just do it. As quickly as you can support them to regain some sense of safety somewhere in their lives will help to settle the intense anxiety and the irrational fears.

It’s very important to try and be a safe person for them to be around. This doesn’t mean always getting it right – that is completely impossible. What it does mean is accepting that sometimes you will get it completely wrong – and being okay with acknowledging that. So if they say ‘It’s really not helpful when you do x’, you can go ‘sure, I’ll stop’ instead of launching into 300 brilliant reasons why you thought x was a good thing to do and why any sane person would have appreciated it. It’s also helpful to keep in mind that sometimes there is no right answer. The person is just stressed out and overwhelmed and not coping, and anything you do will be wrong. Don’t sign up for abuse about this, but don’t rake yourself over the coals for it either. As the stress and intensity settle down this should be less of an issue.

Another big part of being a safe person is not putting pressure on them to recover. Victims of assault for example, may find their partners deeply frustrated with their changed needs, feelings and behaviour, and constantly asking when they are going to be ‘back to normal’. Other people desperately need to move on and feel normal again and are under pressure from well meaning friends to open up and talk about it all. This brings me to the next critical area:

Balance
People who have been traumatised often express intense ambivalence. There are many double binds where they feel conflicting needs very strongly such as I want to talk about/I never want to talk about it. It can be very difficult to find a balance between the need to honour the events of the past, to speak about it, feel heard and validated, and have it recognised; and the need to escape it, to move on from it, to connect to the present moment and plan for the future. Different people have different needs and gravitate towards or away from their trauma at different times. Often from outside, we can perceive the lack of balance in their response. We are concerned by obsessive reliving of the event, or anxious about their intense avoidance of it. We can try to intervene and restore balance by pulling the person back in the other direction, but often this is merely perceived as an attempt to control. I would recommend instead trying to support the person and trust their own instincts about what they need and when they need it. When they have met one need, they will naturally swing towards the other. No one goes through this on some kind of ‘perfect’ arc, struggling to process trauma in an unbalanced way is the norm. Over time and with work and love, these things settle down. Be guided by their instincts, and never, ever forget, just how powerful it is to feel heard. When all else fails, or if you’re not sure what to do, your default stance is to listen compassionately. Sometimes the less you say or try to do, the less you fix, rescue, hover and fret, and the more you just hear the person, the better.

Another really important area around balance is to be aware of the changes that trauma makes to your relationship. It can temporarily shift you both into a carer/caree dynamic. This kind of dynamic is very powerful, to set aside your needs and make sacrifices to support and nurture another person is an incredible demonstration of love. But the unbalanced nature of this relationship, where you give care and they need care, can also cause problems. Healthy relationships are very fluid, there is a constant exchange of roles between who listens and talks, who sacrifices, who nurtures, who protects, who advises. This mutuality is a key to trust, respect, and mutual contentment. The carer dynamic can undermine that. I advise you to wear the roles lightly. Look for opportunities to share your vulnerabilities too, to allow them to support you as they are able to. If you can remember that the person is far more than their trauma, you will help them to remember that also. The natural response of relationships to trauma and intensity is to polarise into opposite, rigid roles. This is stifling and destructive, so be aware of it and encourage natural growth back towards mutuality.

Looking after yourself
Lastly, it is really important to recognise that when someone you care about is hurt, you are hurt too. You also need care and support and to take care of yourself. You may find yourself feeding off their anxiety and dissociation, feeling chronically irritable, frustrated, or depressed. Debriefing can be very helpful – if the person you care about is sharing deeply personal information with you, you can become very stressed by the need to keep secret things that are really upsetting you. In this instance confidential counselling of some kind can be really helpful. A sense of humor can also help to reduce the impact of trauma, breaking tension and relieving stress. Sometimes there is nothing better in the world someone can offer me than to come round and watch some Monty Python. 🙂

I hope there’s a few suggestions in there that are useful to you. In a nutshell I would suggest that you listen a lot, be guided by what they ask for and want, and hang in there. Research consistently shows that social support is one of the biggest factors in how resilient people are to the effects of trauma. Your care and sensitivity can make a tremendous difference.

To see these ideas in action in a personal case study, please read 5 hours after an an assault.

What is Peer Work?

/ Sarah K Reece / Leave a comment

Peer Work is drawing from your own experiences to support someone else. It’s an idea that’s been around for many years in health, for example cancer survivors running groups to support people newly diagnosed. It’s fairly recently a role that’s becoming respected in Mental Health. At the moment many people are employed to support carers, perhaps called Carer Consultants, who have or are themselves carers and can support, educate and relate to other carers in a personal way. This is one kind of peer work. Consumer Consultants are people who draw upon their personal experience of living with or having had a mental illness themselves to support, encourage and educate other people. When the term Peer Work is used in mental health, this is usually the kind they are referring to. There are many names for this ‘peer work’ role such as Consumer Educators, Community Workers, Mental Health Educators, Peer Facilitators etc., and it’s becoming more common for mental health teams in hospitals and community centres to have Peer Workers on staff. Peer Workers are also often in voluntary roles such as visiting people in psychiatric hospitals.

What do you need to do to be a Peer Worker? You do need to be reasonably well yourself, whether living well with your condition, or recovered from an episode. Anytime you draw upon your experiences to help another person, you are doing peer work. Many peer workers find that this isn’t so much a job description as a part of how they live their lives. Even if you are very unwell and in hospital, if you can listen, encourage, give useful information to, or in some way make things easier for another patient, you are doing peer work, in my opinion.

If you’d like to become a peer worker, there is some training you can do, through the Peer Work Project here in SA. It will also help if you spent time with other people with mental illnesses through a community centre or online perhaps. Often we know a great deal about our own condition, but very little about other mental illnesses. Broadening your knowledge can help you relate to and support more people. I’d suggest you attend or volunteer at a local club, centre, or hospital that supports people with mental illness.

What does a Peer Worker do exactly? Well, that depends, the roles can vary tremendously. Some people work one on one and support people living with mental illness. Some people give talks, sharing their story with different audiences – perhaps people who have little experience of mental illness and who may benefit from putting a human face on labels and conditions. Other people run groups, perhaps around a skill, activity, or particular experience (eg. anxiety). Some people do admin and get peer related resources up and running such as online websites.

Being a good peer worker involves a passion for this work, a willingness to be open about your experiences, excellent listening skills, lots of patience, and good support. Good boundaries, a degree of stability, and the ability to handle having a foot in both worlds (part ‘consumer’, part ‘staff’) will help a lot. Peer Workers, like everyone else in this field, are vulnerable to burn out so you really do need to take good care of yourself, have good support and pay attention to your early warning signs. Having said that, for many of us the opportunity to convert painful experiences into something that helps people and to feel useful is a crucial part of our recovery. If it suits you, you can find a good balance, and you have good support, then Peer Work can be one of the things that supports your mental health.

Poem – She falls

/ Sarah K Reece / Leave a comment

walking into the adult world
layers of illusions peeling away
and the emptiness beneath us all coming into view

the veneer of our security so thin
we are a lost race on a world
falling into space and our dreams
are a taste of death, first thing in the morning
and the last hour of night

in my minds eye
everyone I love is gone
it falls away

no island so remote
as to be beyond the touch of tragedy
we destroy it all and it destroys us

we live on borrowed time and the pain
catches up in the end
we pay for all our sweet days
all the debts are collected

There is no peace.

there are moments of joy.
touch on my skin
love in their eyes
dreams in my heart

but the dark always comes
and the light is so frail

all our hopes unwoven
our allotted happiness
spent like sand through glass

what does it all mean?
I hold her hand
and I can feel her slipping
night has its teeth in her skin

We live, we love and we die.

each moment is pulled like a cloth
over the emptiness beneath us
over the screaming terror and the helplessness
the hours that torture and the dreams that sustain

We fly a little, and then we fall.

Poem – Doubt

/ Sarah K Reece / 2 Comments

I sit by your bed in hospital and say
I love you, don’t go
and say – endure!
and say – it will get better!

I sit by your bed and hope
you wont make a liar of me. 

I sit by your bed and beg

for one more day
of the screaming pain
the nightmare you can’t wake from
and the darkness

strangest thing – they tell me
it is you who is selfish.

Caring for someone who’s suicidal

/ Sarah K Reece / 8 Comments

One aspect of my life I haven’t discussed much is that of a carer. That’s partly because it’s difficult to talk about without exposing information about the person I care for, which I am keen not to do to them. But it has been a very important part of my life, and something I know many of us are doing. So I thought I’d share a little about some aspects of the caring role I’ve been thinking about lately. Some folks don’t like the word carer, I understand the discomfort. There can be a kind of one-upsmanship in the terms carer and caree. The carer is the sane and responsible one and the caree is the sick one who needs all the help. Gone are terms of a mutual relationship and clear roles replace them. Some people also dislike distinguishing between those who are family and those who are the carers, others dislike having all the family suddenly called the carers, whether they play that role or not. I’m not particularly comfortable with the terminology myself, but I do know that I’m the family who’s there on a regular basis at 2am. That makes me a carer.

Terminology aside, the person I care for struggles with feeling suicidal. As is common with many mental illnesses, these issues come in episodes. Earlier this year they became so distraught for so long they tried to take their own life. Fortunately we were able to save them. Being a carer for someone who is chronically suicidal is a particular kind of anguish. I’ve given some thought to the ways I’ve managed this painful situation. Our paths are all very individual and I’m not speaking for other carers, only myself. It may be that none of these suggestions are useful to anyone but me!

The chronic fear, stress, anguish and internal conflict involved when caring for someone who’s suicidal can absolutely devour you. Emotional instability becomes normal, you swing wildly from ecstatic relief they’re alive, to horror at their pain, and fury at what this is doing to you and your family. This is physically and emotionally exhausting, and signs of burn out can appear quickly. Periods of apathy and numbness intrude, physical exhaustion and mental confusion make it harder to keep going. The person you love seems to be burning alive and with them, you burn too. For myself, I develop a really short fuse. I become very irritable with everyone around me. I can’t concentrate for long on anything. I cry at the slightest thing. I feel permanently distracted, part of my mind is always with the person I care for. I feel permanently afraid. There’s a deep sense of terror that is always with me, lurking in my chest and chewing on my bones. I try to adapt but I cannot get used to it or accept it. There’s an anguish that has had me curled up on the floor in the shower, hoping the neighbours can’t hear me scream.

So, what has helped keep me going?

There is, and I say this very carefully, an upside to living on the edge of death this way. I have been unable to take away any of the downsides. My efforts to adjust and adapt have had only the most limited success over the years. So, I hold to me every sustaining thing I can find in this experience.

The truth is that anyone we love could be about to die. The truth is that we could be the one to pass away in an accident on the drive home from the hospital. It’s just that none of us can really live with this awareness. So for those of us who are forced to – use it. Settle your grievances where you can. Say those things you will have wished you said. Not just to the person you care for, but everywhere in your life. Make your peace.

Treat yourself with great compassion. There is a tremendous grief in loving someone who has become so hurt and disillusioned that they seek death. The loss in a way, is as if they have died. Be very gentle with yourself, and give yourself time to grieve. Find ways to express the anguish, be those with other people, through art, journals, tears. The painful truth is that for some people, mental illness is a terminal disease. It does not take away from who they are or everything else they have done in life. Try to remember how you would treat them if they were going through cancer or another life threatening disease. They are not doing this to you, they are suffering with this and because you love them, you are suffering too. That is the nature of love.

Despair can be contagious. But closeness to death can also leave us awakened to our own life, and vividly aware of our own existence. There’s an urgency in me, a restlessness with meaningless routine. A desire to cast off the grey and ordinary and to taste life. Let this dance in you! Stand in sunlight, listen to rain on the roof, smell the sweetness of the apple blossoms. You hurt because you are still alive, and still value life. Don’t go down with them. Let the joy, the energy, the restlessness burn in you and give you respite from the exhaustion and numbness. Don’t wait for your loved one to come back to life, show them how. These are the moments that sustain you. We more than anyone understand how brief our lives can be, and that any day could be our last. Breathe it in deeply!

Don’t try to kill the pain. Emotions aren’t like a menu, you can’t choose the ones you want. In my experience, you feel all, strongly, mildly, or not at all. The pain is going to sit in your heart like a stone whether you feel it or not. Best to wash it out with tears and be able to feel love, joy, and peace however briefly when they come.