There isn’t a handbook for this job. I have had to create my own job description and rules.

For a short time in autumn 2007, I lived in an apartment on Tverskaya Ulitsa, between Red Square and Pushkinskaya metro. When my twin daughters and husband left each day to work and school, Abby and I attempted homeschooling whilst awaiting a place to open up in year 6. Surprisingly enough, one of the most challenging aspects of our new lives was feeding ourselves. Translating Cyrillic cursive on food labels proved impossible. Lacking all measuring utensils and having only a few saucepans to work with, whatever I cobbled together was too often inedible.

One too many pasta disasters forced me to face my fear of speaking Russian. I would brave the wilds of fast food.

I rehearsed my order under my breath as I walked to KFC...”ya khochu shefburger ee bolshoi cola-light, pozhaluysta. Spasibo…” over and over again. When my turn in the queue came up, I faced a lovely young woman, waif-like in her ballerina perfection. I took a deep breath, recited my speech, and watched as she took my order. When she passed me the bag, she offered a shy smile and said, “Thank you very much. Have a nice day.” In English.

I sobbed the whole way back to the apartment.

She saw me. She recognized how hard I was trying and threw me a life preserver. Few times in my life have I felt such immediate gratitude to be seen for who I am--a clueless foreigner who felt lost and alone--and to be offered such kindness.

As a carer for a brain injury survivor, I find many similarities between my expatriate experiences and this unfamiliar sea I’m crossing as I support Abby in brain injury recovery.

Survival means learning a whole new language of neuroscience and rehabilitation. Issues I’ve never before considered become daily concerns. From pragmatic challenges such as fitting her wheelchair through the door at the hairdresser’s to coordinating tests, appointments, and therapies, I’m expected to be a self-taught expert on all things neurological. (Notwithstanding my actual role as a parent helping her navigate brain fog, unremitting fatigue, and emotional pain.)

When people say how admirable it is that I have assumed the role of full-time carer, I often respond with “What else was I supposed to do?” Love calls me to be a carer. There is no salary, no paid time off, or swag to celebrate a job well done. So much of the battle my daughter fights is unseen and as a consequence, lonely. Her isolation, by association, extends to me. There isn’t a handbook for this job. I have had to create my own job description and rules.

One of my key responsibilities is helping Abby steer her own ship; I am the first mate, not the captain.

My role often requires tamping down my instinct to go full mamma bear. Abby will place a gentle, restraining hand on my leg, reminding me that she is in charge, and no, kicking the gastroenterologist in the shins would be ill-advised. I chose this role. But regardless of what I do or think or feel, she is the patient. She must be seen and heard. Helping her accomplish that requires chameleon-like adaptation. I feel selfish admitting that I sometimes resent feeling invisible as her carer.

Early in this journey, I learned that survival meant extending grace not just to the idiots who “didn’t get” Abby, but also to myself. There is no understating the importance of obtaining proper care and support for brain-injured individuals. Sometimes the burden of this duty feels impossibly weighty to those tasked, as we carers are, with being the organizer, go-between, facilitator, planner, researcher, advocate, and amateur therapist.

Obtaining proper care and support for ourselves often proves tricky. We are of no use to those we love if we deplete ourselves to husks. Expectations must be modified. Goals, without grace, can become sticks to beat ourselves with. What does your list look like? Earning a work promotion. Saying no to sweets. Saving money for the car that will break down in the hospital parking lot. Sleeping eight hours a night (me!). Curbing the impulse to buy useless crap from Amazon (definitely me!). In societies driven by self-help culture, no one is exempt from being nudged toward living “your best life now.” Yes, you too, fellow carer. Try harder and you can fix what ails you.

This is rubbish.

No, your emotional exhaustion will not be magically healed by a hot bath and a scented candle. But having self-compassion and grace for your flabby stomach and the dark circles under your eyes while in the bath is a start. Love yourself right where you are, as you are--failures, flaws, weaknesses, ugly thoughts, petty behaviors, and all. Recognize that what you have been called to do as a carer necessitates dumping your burdens from time to time, and being truthful with yourself about your feelings and needs. You might resent your role—even the one you care for. Anger and grief are normal—and healthy. Yes, this is a completely garbage situation you’re in and it is your right to be completely pissed off about it. See yourself in truth and accept that the wonderful creature in the mirror has undertaken an extraordinary mission and deserves all the gold stars. This is one time where just showing up and giving it a go counts for a lot.

Finding grace for yourself is a start. The second, absolutely necessary skill is making space for yourself.

Great British Bake Off winner Nadiya Hussain has a saying she uses with her children: elbows out. She further explains that you can’t make room for others until you make room for yourself. As a carer, if you don’t make room for yourself, you won’t be much help to the one you’re caring for.

Elbows out. Make yourself--and your needs seen. Pretense is exhausting.

Being hunched over, squeezed into a corner, waiting for a turn, that might never happen means sometimes you have to put your elbows out and push your way to the front. This isn’t intuitive, particularly when the carer’s role is to be supportive. But often the alternative is becoming a shadow of yourself, a ghost in your own life. I know this from experience.

I squished myself small, minimizing my needs until my health became a Medusa of migraines, insomnia, anxiety and depression. Friendships faded. Relationships became rocky. Panic attacks—whilst driving—finally scared me into action. I pushed my elbows out. I found mental health support. I figured out the major causes of my migraines and addressed them. I began walking my dogs every day to breathe some fresh air. I set boundaries with unhelpful people and said no to situations that didn’t suit me. Small steps, but important ones made my needs visible. In the process, I made room for a few carers like me. I hope pushing my elbows out has helped others better understand the truth of both brain injury and caregiving.

I’m not going to pretend I have it all figured out because that would be a lie. Some days I still hide in my closet to read a book and pretend that Abby is off at university studying to become a rehabilitation psychologist.

Sometimes screaming feels nice. Letting go of the expectation that I have to shapeshift into a form I don’t recognize to make this caregiving life work.  I’m still me and that matters. All we carers face unique experiences with our beloved brain injury survivors, but one truth applies to all of us: we cannot afford to lose ourselves as we devote ourselves to serving them. Our loved ones are not the only ones at risk of losing their precious sense of self. You can better hold on to the “same you” you have always been if you follow the mantra “grace and space.”  Self-compassion and elbows out.

Becket, Rob and Widdicombe, Josh. “S02 E 17: Nadiya Hussain.” Lockdown Parenting Hell. Keep It Light Media, 19 March, 2021. https://podcasts.apple.com/gb/podcast/rob-beckett-and-josh-widdicombes-lockdown-parenting-hell/id1510251497