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\u2019d be able to string the right words together on my now heavy tongue.<\/span><\/p>\n 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.\u00a0\u00a0\u00a0\u00a0<\/span><\/p>\n 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\u2019t be there or they would come out halting. \u201cWant\u2026 strawberries. Brain\u2026 injury\u2026 can\u2019t\u2026 talk,\u201d I once told a vendor at a farmer\u2019s market a month and a half after my injury. The vendor smiled in sympathy and placed the strawberries in a bag.\u00a0<\/span><\/p>\n 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.\u00a0 He\u2019d just asked me a question and I\u2019d 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.\u00a0<\/span><\/p>\n It was okay not to be okay.\u00a0\u00a0<\/span><\/p>\n Over two years later, it\u2019s 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.\u00a0<\/span><\/p>\n I seem okay \u2013 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.\u00a0<\/span><\/p>\n 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\u2019s it \u2013 you\u2019re now always able to do that thing. But that\u2019s not how brain injuries work. I try to tell people what my neuro-optometrist told me \u2013 hoping that if they understand that I spend my days carefully monitoring how my brain reacts to things — they will be more empathetic.\u00a0<\/span><\/p>\n \u201cImagine that an injured brain is like a pot boiling on the stove,\u201d I repeat my doctor\u2019s words for friends. \u201cWhen I got injured, my brain lost many of the connections between its neurons. As it healed, it\u2019s rerouted things inefficiently.\u00a0 My brain is therefore using up way more energy when I do typical things \u2013 it\u2019s boiling much hotter than other people\u2019s brains.\u201d<\/span><\/p>\n \u201cSo, you have a hot brain,\u201d friends often joke when I get to this part.\u00a0\u00a0<\/span><\/p>\n I roll my eyes and continue. \u201cYes! And in order to keep that \u2018hot brain\u2019 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\u2019s a slow process and as my brain heals all sorts of things add water to that pot \u2013 stress, sensory stimuli, emotional experiences, physical activity, different kinds of cognitive demands \u2013 and quite suddenly it can overboil.\u201d<\/span><\/p>\n It\u2019s difficult to live with a brain always on the verge of boiling over \u2013 I never know if I\u2019ll be able to do what I\u2019ve planned to do in a day or if suddenly I\u2019ll be stilled by the intense fatigue and brain fog that sets in when my brain \u2018overheats.\u2019 When that happens, often all I can do is lie on my couch for hours with my eyes closed \u2013 doing nothing but resting and hoping my brain will recover.\u00a0<\/span><\/p>\n But what\u2019s 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.\u00a0<\/span><\/p>\n 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\u2019t physically capable of talking that night.\u00a0<\/span><\/p>\n \u201cYou\u2019re lying,\u201d they would say. \u201cYou just don\u2019t care about me.\u201d\u00a0<\/span><\/p>\n Trying to process their words would worsen the tension in my head. I\u2019d 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.\u00a0<\/span><\/p>\n \u201cStop pretending,\u201d they would shout back before resuming a diatribe about why I was a terrible person because I couldn\u2019t 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 \u2013 would anyone ever understand and accept it?\u00a0<\/span><\/p>\n Not being believed when your body is doing things that are already distressing or painful greatly increases your distress. That\u2019s been one of the hardest parts about being disabled \u2013 telling people I\u2019m in pain or too fatigued to leave my house or that I can\u2019t safely do something \u2013 and having them blame me for it, tell me I don\u2019t care about them, or that I could push through it if I just wanted to enough.<\/span><\/p>\n I\u2019ve been called rude. Uncaring. Scattered. Dumb. Attention Seeking. All because of something that is beyond my control.\u00a0<\/span><\/p>\n \u201cI can\u2019t go to a noisy restaurant tonight,\u201d I would tell a friend. \u201cBut you should come over and I\u2019ll order in\u00a0 and we can go for a quiet walk.\u201d\u00a0\u00a0\u00a0\u00a0\u00a0<\/span><\/p>\n Or<\/span><\/p>\n \u201cI don\u2019t feel safe to drive. But you should come over and sit with me on my couch and talk.\u201d\u00a0<\/span><\/p>\n \u201cHow convenient,\u201d one friend told me, \u201cYou looked just fine in that picture you posted of yourself on Instagram last night.\u201d\u00a0<\/span><\/p>\n Some non-disabled friends forget that I\u2019m disabled or believe that I might suddenly have miraculously recovered since I saw them last month.\u00a0<\/span><\/p>\n \u201cYou look great,\u201d they tell me. \u201cI\u2019m glad to see you\u2019re all better.\u201d<\/span><\/p>\n 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\u2019ll struggle the next day with fatigue. Or that just because you\u2019re smiling in a picture it doesn\u2019t mean that you\u2019re well. Don\u2019t they know that I\u2019m still me? That relentlessly honest person who would do anything for a friend? Don\u2019t they know that I feel truly terrible for having to cancel or change plans but that my body has given me no other choice?\u00a0\u00a0<\/span><\/p>\n I often feel distress about my symptoms when I\u2019m with able-bodied friends — like I have to hide them or be ashamed about them. I worry they\u2019ll get sick of hearing me talk about my disability. For that reason, I am always on edge with non-disabled friends \u2013 even if they\u2019ve never given me reason to worry before. After all, friends that I\u2019ve trusted have gotten angry at me when I\u2019ve gently asked them to stop talking for a moment because I\u2019m struggling to follow. Their anger and disappointment in me in those moments has broken me. It felt like a deep rejection.\u00a0<\/span><\/p>\n I wince sometimes when I have to communicate that I can\u2019t do something or if I have to ask someone to accommodate my needs. I don\u2019t 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\u2019ll use that as a way to claim I\u2019m lying to them about my disability or how I feel on any particular day.\u00a0\u00a0<\/span><\/p>\n It is not okay to not be okay, is the message that I\u2019ve gotten time and time again. Or I keep being told that I am actually okay and that I\u2019m just faking it.\u00a0<\/span><\/p>\n So, I didn\u2019t know how Cathleen would respond. Our friendship was still fairly new. I\u2019d 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\u2019s going to be annoyed with me, I thought.\u00a0<\/span><\/p>\n But Cathleen just smiled and turned off the radio.\u00a0<\/span><\/p>\n \u201cI\u2019m glad you told me,\u201d she said warmly. \u201cYou just rest your brain. I\u2019ll leave it to you to start talking again when you\u2019re 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.\u201d<\/span><\/p>\n I relaxed into the seat and closed my eyes, relieved. It occurred to me that I was more disappointed than Cathleen \u2013 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\u2019s words gave me permission to not be okay and also to not feel bad about not being okay. I didn\u2019t have to hate my body in this moment or feel distress at disappointing another friend. I felt calm. And I felt deeply accepted.\u00a0\u00a0<\/span><\/p>\n I shouldn\u2019t have been surprised at Cathleen\u2019s response. After all, she identifies as disabled herself but for different reasons than I do. We\u2019d planned the trip as a kind of \u2018spoonie getaway\u2019 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.<\/span><\/p>\n \u00a0\u201cI want to find ways to go on short road trips to see how my brain will react,\u201d I\u2019d told Cathleen.\u00a0<\/span><\/p>\n \u201cLet\u2019s go to Harrison Hot Springs overnight,\u201d she\u2019d immediately suggested. \u201cIt will be fun! I\u2019ll drive and we can be as active or laid back as our bodies allow.\u201d<\/span><\/p>\n 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.\u00a0<\/span><\/p>\n Once we arrived, we spent the trip carefully navigating each other\u2019s 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\u2019t 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?\u00a0<\/span><\/p>\n We put a lot of care and thought into our questions. We were genuinely curious about how the other person\u2019s 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.\u00a0<\/span><\/p>\n 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\u2019d want to make it an early night.\u00a0\u00a0<\/span><\/p>\n 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.\u00a0<\/span><\/p>\n When she dropped me off, we were both glowing from the warmth and care we had felt over the weekend.\u00a0\u00a0<\/span><\/p>\n \u201cWe\u2019re family,\u201d she said, \u201cspoonie family,\u201d 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<\/a>, which says that disabled and chronically ill people have a more limited amount of \u2018spoons\u2019 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\u2019ve 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.\u00a0<\/span><\/p>\n \u201cIt\u2019s a different and deeper kind of love,\u201d he said.\u00a0<\/span><\/p>\n \u201cAbsolutely,\u201d I agreed. \u201cIt\u2019s a love that accepts you completely. It\u2019s the love we give each other because we wish others had given it to us.\u201d\u00a0<\/span><\/p>\n 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\u2019s pushed me to seek out or deepen relationships with disabled people, of whom Cathleen and Adam are just two.\u00a0<\/span><\/p>\n 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\u2019ve encountered — but we talk about everything now.<\/span><\/p>\n \u201cI\u2019m so glad I met you,\u201d Jacob told me recently. \u201cI didn\u2019t 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\u2019t have to feel shame about it. You\u2019ll just accept me and make me feel less terrible.\u201d<\/span><\/p>\n 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\u2019m struggling with from a place of empathy and kindness. We also give each other space to be angry \u2013 about ableism or our symptoms — without the pressure to immediately transform that anger into something more positive or palatable for a non-disabled person.\u00a0<\/span><\/p>\n \u201cI don\u2019t know what I would do without you,\u201d I told Jacob recently. \u201cI think I would just sit here by myself feeling horrible on bad days. You make me feel so much less alone.\u201d\u00a0\u00a0<\/span><\/p>\n 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.\u00a0<\/span><\/p>\n 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\u2019t able to write. She believed me. She didn\u2019t accuse me of being lazy or lying. She didn\u2019t 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\u2019s bad dancing skills or told stories about her that went back as far as the stories I told did. She valued that \u2013 and she worked with my disability.\u00a0\u00a0<\/span><\/p>\n 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\u2019ve shown me what true friendship can look like. They\u2019ve made me feel like I have a right to ask my able-bodied friends to do better. Like I don\u2019t 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\u2019t have to feel guilty or terrible all the time because of things I can\u2019t control.\u00a0<\/span><\/p>\n 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\u2019ve also helped me figure out how to address the ways in which I\u2019ve been hurt by friends\u2019 ableism in the past and been there to support me when I\u2019ve had to cut friends out of my life because they wouldn\u2019t treat me better.\u00a0<\/span><\/p>\n \u201cDisabled bodies aren\u2019t personality flaws,\u201d I told one friend recently after they got mad at me because I had to change plans. \u201cI\u2019m sorry that you\u2019re inconvenienced, but that doesn\u2019t make me a bad person.\u201d\u00a0\u00a0<\/span><\/p>\n I\u2019ve also started telling able-bodied friends how they can accommodate me better \u2013 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\u2019m honest when we\u2019re hanging out and I suddenly get tired and need to go home early.\u00a0\u00a0<\/span><\/p>\n But disabled friends still feel safer to be around. I think they always will. There\u2019s something about knowing what it\u2019s 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\u2019t tell me not to let my disability define me just because I\u2019m talking a lot about it. I don\u2019t need to censor myself. I don\u2019t need to hide anything. I don\u2019t need to pretend. I can be me \u2013 a creative, funny disabled person who is struggling with health issues while dealing with grief over the things I\u2019ve 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.\u00a0\u00a0\u00a0<\/span><\/p>\n What my disabled friends essentially show me is the beauty of being disabled \u2013 which for me is most evident in the deep and fierce connections disability fosters.<\/span><\/p>\n Recently, on the same day I was telling Cathleen that it was okay that she didn\u2019t 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.<\/span><\/p>\n \u201cI\u2019m so grateful for disabled friendships,\u201d I told Adam. \u201cI would never have gotten the chance to give or receive this kind of love if I hadn\u2019t become disabled. And now that I know love like this, I won\u2019t settle for anything less. That\u2019s such a gift.\u201d\u00a0\u00a0\u00a0<\/span><\/p>\n A. H. Reaume<\/strong> is a feminist activist and writer whose life was changed by a head injury in 2017. Reaume is a columnist for Open Book<\/a>, 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<\/a> or on her website www.ahreaume.com<\/a><\/span><\/p>\n <\/p>\n Support Disability Media and Culture<\/b><\/p>\nAbout<\/strong><\/h3>\n
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