The Beauty and Care of Disabled Friendships

The Beauty and Care of Disabled Friendships

 A. H. Reaume

 

“I can’t do language right now,” I told Cathleen as we edged along in stop and go traffic. 

Getting these words out was difficult. They came slow and halting and hurt my brain. In the quiet that descended after I spoke, I wondered how I would explain what was happening to me if she asked — unsure if I’d be able to string the right words together on my now heavy tongue.

There is something deeply vulnerable about suddenly losing the ability to talk and process what others are saying. I never quite know how to navigate it.    

After my brain injury, I had to relearn how to walk and talk at the same time. I would open my mouth and the words either wouldn’t be there or they would come out halting. “Want… strawberries. Brain… injury… can’t… talk,” I once told a vendor at a farmer’s market a month and a half after my injury. The vendor smiled in sympathy and placed the strawberries in a bag. 

Back then, people were understanding. My friend Gio, who was my main support in the aftermath of my injury, once joked that someday I would be a walkie talkie again as I held onto his arm as he took me for the 20 minutes of daily exercise I was allowed.  He’d just asked me a question and I’d stuttered on the answer. Seeing my distress, he patted my arm and said we could try walking and talking again the next day. We walked in silence after that. I remember feeling deeply loved in that moment as I concentrated on just slowly placing one foot in front of the other. 

It was okay not to be okay.  

Over two years later, it’s hard now for people to understand that things like processing language can still be a challenge for me. Most days, I can walk without losing my balance and talk without my speech slowing to a crawl. I can even do both at the same time. People have since seen me vociferously debate complex literary theory and make a room full of friends laugh with an impromptu 10-minute comedic monologue. 

I seem okay – even if in those moments my internal experience is different from how it appears, even if in those moments I am sometimes trying to power through brain fog, cognitive impairments, or fatigue in order to say what I want to say. 

People who have never had their experience of their bodies radically change often understand recovery as something linear. You hit a milestone or regain a skill and that’s it – you’re now always able to do that thing. But that’s not how brain injuries work. I try to tell people what my neuro-optometrist told me – hoping that if they understand that I spend my days carefully monitoring how my brain reacts to things — they will be more empathetic. 

“Imagine that an injured brain is like a pot boiling on the stove,” I repeat my doctor’s words for friends. “When I got injured, my brain lost many of the connections between its neurons. As it healed, it’s rerouted things inefficiently.  My brain is therefore using up way more energy when I do typical things – it’s boiling much hotter than other people’s brains.”

“So, you have a hot brain,” friends often joke when I get to this part.  

I roll my eyes and continue. “Yes! And in order to keep that ‘hot brain’ from boiling over, I needed to take water out or turn down the heat after I was injured. Now, I did that by healing my brain and retraining it to have more efficient connections, but that’s a slow process and as my brain heals all sorts of things add water to that pot – stress, sensory stimuli, emotional experiences, physical activity, different kinds of cognitive demands – and quite suddenly it can overboil.”

It’s difficult to live with a brain always on the verge of boiling over – I never know if I’ll be able to do what I’ve planned to do in a day or if suddenly I’ll be stilled by the intense fatigue and brain fog that sets in when my brain ‘overheats.’ When that happens, often all I can do is lie on my couch for hours with my eyes closed – doing nothing but resting and hoping my brain will recover. 

But what’s been harder than the physical effects of my injury is trying to navigate relationships that also always seem in danger of boiling over. Because despite my efforts to educate friends and family about the intermittent and unpredictable nature of my disability, many have struggled to understand. 

This year, I had to cut a family member out of my life since, among other things, they would sometimes call and yell at me if I told them that I wasn’t physically capable of talking that night. 

“You’re lying,” they would say. “You just don’t care about me.” 

Trying to process their words would worsen the tension in my head. I’d become confused. The language I needed to reassure them I loved them and communicate that I was unable to speak was just not there. All I could offer them was fragments, stuttering, and incoherence. 

“Stop pretending,” they would shout back before resuming a diatribe about why I was a terrible person because I couldn’t be there for them exactly when they wanted me to be. After each of those conversations, I would cry. If this was how my loved ones responded to my disability – would anyone ever understand and accept it? 

Not being believed when your body is doing things that are already distressing or painful greatly increases your distress. That’s been one of the hardest parts about being disabled – telling people I’m in pain or too fatigued to leave my house or that I can’t safely do something – and having them blame me for it, tell me I don’t care about them, or that I could push through it if I just wanted to enough.

I’ve been called rude. Uncaring. Scattered. Dumb. Attention Seeking. All because of something that is beyond my control. 

“I can’t go to a noisy restaurant tonight,” I would tell a friend. “But you should come over and I’ll order in  and we can go for a quiet walk.”     

Or

“I don’t feel safe to drive. But you should come over and sit with me on my couch and talk.” 

“How convenient,” one friend told me, “You looked just fine in that picture you posted of yourself on Instagram last night.” 

Some non-disabled friends forget that I’m disabled or believe that I might suddenly have miraculously recovered since I saw them last month. 

“You look great,” they tell me. “I’m glad to see you’re all better.”

It surprised me how difficult it is for non-disabled people to understand invisible and intermittent illnesses and how pushing yourself to go out one night might mean that you’ll struggle the next day with fatigue. Or that just because you’re smiling in a picture it doesn’t mean that you’re well. Don’t they know that I’m still me? That relentlessly honest person who would do anything for a friend? Don’t they know that I feel truly terrible for having to cancel or change plans but that my body has given me no other choice?  

I often feel distress about my symptoms when I’m with able-bodied friends — like I have to hide them or be ashamed about them. I worry they’ll get sick of hearing me talk about my disability. For that reason, I am always on edge with non-disabled friends – even if they’ve never given me reason to worry before. After all, friends that I’ve trusted have gotten angry at me when I’ve gently asked them to stop talking for a moment because I’m struggling to follow. Their anger and disappointment in me in those moments has broken me. It felt like a deep rejection. 

I wince sometimes when I have to communicate that I can’t do something or if I have to ask someone to accommodate my needs. I don’t expect able-bodied people to want me to be comfortable because I think my comfort will be seen as too big an inconvenience. I expect them to yell at me if I cancel. I worry about what I post on Instagram or other social media in case they’ll use that as a way to claim I’m lying to them about my disability or how I feel on any particular day.  

It is not okay to not be okay, is the message that I’ve gotten time and time again. Or I keep being told that I am actually okay and that I’m just faking it. 

So, I didn’t know how Cathleen would respond. Our friendship was still fairly new. I’d met her just over a year before at a writing workshop she was leading and had had her over to my house a few times for dinner. I sat there waiting for her to sigh in disappointment. We had just set off on a two-hour road trip. Who knew when I would be able to talk or listen again? She’s going to be annoyed with me, I thought. 

But Cathleen just smiled and turned off the radio. 

“I’m glad you told me,” she said warmly. “You just rest your brain. I’ll leave it to you to start talking again when you’re ready. But take your time. The drive is beautiful and its fine if we both need to be quiet the whole time. I like the quiet, too.”

I relaxed into the seat and closed my eyes, relieved. It occurred to me that I was more disappointed than Cathleen – I had prepared a list of things I wanted to get her opinion on during the drive. But as I waited for my brain to start working again, I once again felt that deep sense of love that I had felt before with Gio. Cathleen’s words gave me permission to not be okay and also to not feel bad about not being okay. I didn’t have to hate my body in this moment or feel distress at disappointing another friend. I felt calm. And I felt deeply accepted.  

I shouldn’t have been surprised at Cathleen’s response. After all, she identifies as disabled herself but for different reasons than I do. We’d planned the trip as a kind of ‘spoonie getaway’ after I told her how sad I was when I decided to cancel all travel for the foreseeable future since travelling affected my health. For almost a month after even a short trip, I spend the evenings lying on my couch too fatigued for my brain to process anything. My last trip was also ruined since I collapsed from severe fatigue halfway through and spent the rest of the trip stuck in bed at my Airbnb.

 “I want to find ways to go on short road trips to see how my brain will react,” I’d told Cathleen. 

“Let’s go to Harrison Hot Springs overnight,” she’d immediately suggested. “It will be fun! I’ll drive and we can be as active or laid back as our bodies allow.”

If Hollywood ever wants to produce a disabled buddy comedy/road trip movie, our short vacation would provide good inspiration for the script. I regained my ability to talk again after half an hour and we turned the music up and talked about life and disability as we watched mountains and farmland roll by outside the window. 

Once we arrived, we spent the trip carefully navigating each other’s health issues. Did this restaurant have things the other could eat? Was that area of the hot springs too warm? Not warm enough? Did you need to lie down before dinner? What time did we need to get to bed? How much time did it take for us to get moving in the morning? How could we simplify this task so that it didn’t overwhelm us and bring on brain fog? Was that too far to walk? Should we take the elevator? Did it make sense to pay for valet parking to avoid the walk and get help with our bags? 

We put a lot of care and thought into our questions. We were genuinely curious about how the other person’s bodymind worked. We wanted to ensure that we were both comfortable or help problem solve if things went sideways. Both of us felt safe answering truthfully, unworried that the other would see our body as an inconvenience or get sick of talking about it. What we wanted was to spend an enjoyable time together and we both knew that paying careful attention to all these details would help the other have more fun. 

Cathleen, knowing that I liked dancing, had booked reservations at a place with live music, for example. But she booked an early reservation knowing dancing would quickly tire me out and I’d want to make it an early night.  

My favorite moment was when we were trying to pin down some of the logistics of our trip while we were both severely brain fogged. We started giggling because neither of us could wrap our heads around a very simple planning consideration nor could we speak about it clearly. If someone able-bodied was with us they might have gotten frustrated or yelled at us. But neither of us felt shame in that moment. Nor did we worry that the other would judge us for such a minor thing as a momentary cognitive deficit. Instead, we were brought closer by having a symptom in common. What usually distressed us in the presence of others, made us laugh together. 

When she dropped me off, we were both glowing from the warmth and care we had felt over the weekend.  

“We’re family,” she said, “spoonie family,” and I agreed. I loved the idea of a family defined, in part, by the kinship that develops between people who have limited spoons. Since Cathleen and I check in with each other using the disability metaphor of spoon theory, which says that disabled and chronically ill people have a more limited amount of ‘spoons’ or energy to be used throughout the day than other people, it was particularly apt.The best thing about acquiring a disability has been the connections I’ve built with other disabled people like Cathleen. My friend Adam, who is Deaf, and I talked recently about the love disabled and deaf people give each other. 

“It’s a different and deeper kind of love,” he said. 

“Absolutely,” I agreed. “It’s a love that accepts you completely. It’s the love we give each other because we wish others had given it to us.” 

Disabled love is so strong because it recognizes the ways in which other love often falls short. The ways in which our needs and identities and bodies are ignored or seen an inconvenient by other friends and family. In the last year, other kinds of love have been failing me and that’s pushed me to seek out or deepen relationships with disabled people, of whom Cathleen and Adam are just two. 

My life is now a rich tapestry of disabled friends. Twice a week I usually end up on the phone with my friend Jacob who lives in Boise, Idaho and has MS. We met on Twitter and started talking about our fears around dating because of the ableism we’ve encountered — but we talk about everything now.

“I’m so glad I met you,” Jacob told me recently. “I didn’t have anyone else to talk about these things with. When my body does something weird, I know I can tell you what happened and I don’t have to feel shame about it. You’ll just accept me and make me feel less terrible.”

Likewise, when something happens in my life, Jacob is one of the first people I reach out to because I know he will both celebrate my success and listen to the things I’m struggling with from a place of empathy and kindness. We also give each other space to be angry – about ableism or our symptoms — without the pressure to immediately transform that anger into something more positive or palatable for a non-disabled person. 

“I don’t know what I would do without you,” I told Jacob recently. “I think I would just sit here by myself feeling horrible on bad days. You make me feel so much less alone.”  

My able-bodied friends continue to try. A friend who was getting married recently figured out that it took me a while to respond to long group e-mails about her wedding planning because I struggle with screens and so decided to start sending me a text summarizing the e-mails and giving me a deadline to respond to any action items. As the deadline approached, she sent me gentle and loving reminders. 

She also understood when I needed two extra weeks to write something that I promised to do for the ceremony because I was struggling with screens and every time I sat down I wasn’t able to write. She believed me. She didn’t accuse me of being lazy or lying. She didn’t say that I was ruining her wedding. She adapted her wedding timeline to include me and was grateful for my contribution on the day. No other friend could have made the jokes I did about her husband’s bad dancing skills or told stories about her that went back as far as the stories I told did. She valued that – and she worked with my disability.  

But part of what has helped me improve my relationships with her and the other able-bodied people in my life is my friendships with disabled people. They’ve shown me what true friendship can look like. They’ve made me feel like I have a right to ask my able-bodied friends to do better. Like I don’t have to constantly be apologizing for my body and asking for forgiveness. That I can exist in relation to others in ways where I don’t have to feel guilty or terrible all the time because of things I can’t control. 

I now believe more strongly that I have a right to be treated with dignity within my friendships and my disabled friends have helped me figure out how to ask for and negotiate that without shame. They’ve also helped me figure out how to address the ways in which I’ve been hurt by friends’ ableism in the past and been there to support me when I’ve had to cut friends out of my life because they wouldn’t treat me better. 

“Disabled bodies aren’t personality flaws,” I told one friend recently after they got mad at me because I had to change plans. “I’m sorry that you’re inconvenienced, but that doesn’t make me a bad person.”  

I’ve also started telling able-bodied friends how they can accommodate me better – because disabled friends took the time to ask me how they could accommodate me and that made me come up with a list of things friends could do. I speak up more to modify plans if a friend suggests a noisy restaurant where I might struggle to carry on a conversation. Or I’m honest when we’re hanging out and I suddenly get tired and need to go home early.  

But disabled friends still feel safer to be around. I think they always will. There’s something about knowing what it’s like to have an unpredictable body that often allows you to feel deeper levels of empathy for others with unpredictable or disabled bodies. I know my disabled friends won’t tell me not to let my disability define me just because I’m talking a lot about it. I don’t need to censor myself. I don’t need to hide anything. I don’t need to pretend. I can be me – a creative, funny disabled person who is struggling with health issues while dealing with grief over the things I’ve lost since my injury and fighting ableism in a world that expects me to be something I can no longer be. They like that person. In all her abilities, limitations, and complexity.   

What my disabled friends essentially show me is the beauty of being disabled – which for me is most evident in the deep and fierce connections disability fosters.

Recently, on the same day I was telling Cathleen that it was okay that she didn’t have the spoons to come to a party at my house, I was messaging with Jacob about his recent MS flare, and catching up with Adam over FaceTime.

“I’m so grateful for disabled friendships,” I told Adam. “I would never have gotten the chance to give or receive this kind of love if I hadn’t become disabled. And now that I know love like this, I won’t settle for anything less. That’s such a gift.”   

About

A. H. Reaume is a feminist activist and writer whose life was changed by a head injury in 2017. Reaume is a columnist for Open Book, is working on a novel, and has published in USAToday, Time.com, Forbes, and The Globe and Mail. She can be found on Twitter at @a_h_reaume or on her website www.ahreaume.com

 

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