How I'm Coming to Terms With Being Disabled
As I recover from CIRS, I finally have the space in my head to confront everything I’ve been through with this illness. I always knew there would come a time when I’d have to lean into those feelings and process the grief and loss; to accept the years wasted and the dreams that were taken from me. I expected it would be difficult to let go of the memories from 14 years of illness that continue to haunt me, and to cope with the abandonment by nearly everyone I knew in a time when I needed them the most. But one element that caught me off guard was the need to come to terms with a label I have avoided claiming for too long: disabled.
I had been dealing with other illnesses for many years prior, but in the Spring of 2015, my body rapidly started shutting down. I was unable to eat or drink. I could not sleep. The muscle, joint, and nerve pain throughout my body became unbearable. The fatigue was overwhelming. My hair was falling out. In total, I had developed 20-30 symptoms as I searched for my diagnosis. I could not work, and my ability to perform daily tasks or function in any normal capacity was severely limited. Yet, I never thought of myself as being disabled. Sick? Yes. Disabled? Not really.
It was a Friday afternoon when the right side of my body went numb and tingly. I remember trying to walk away from the class I was in, and the strange way my right leg struggled to move with me. My doctor feared I was having a stroke, and sent me to the ER. They told me it was a migraine. Within weeks, my leg deteriorated, and I had to start using a cane. My cognitive symptoms worsened and I could no longer drive, read or process information, forcing me to drop out of grad school. The neurologist, who I had to wait months to see, refused to run any tests, and told me I was “fit and healthy.” I added him to the long list of doctors who dismissed me.
Eventually, I was diagnosed with chronic inflammatory response syndrome. Due to my genotype and exposure to various biotoxins, the inflammation in my body was severe, but the inflammation in certain parts of my brain was even worse. “Off the charts” was the phrase my new doctor used. Treatment was intense, and followed the rule that everything gets worse before getting better. My mobility was no exception and I ended up needing a wheelchair. However, the rest of my body was so fatigued that I was not always able to wheel across the carpeted floor of our small house, and I was left with one option to meet my basic needs.
I remember crawling. I wish I didn’t. I wish I could block those many months from my memory. I wish I could forget the way I had to crawl from the couch to the bathroom, taking breaks every few feet due to the tremendous effort it required. I wish I didn’t know what it was like to have to pull myself out of the bathtub, dragging my legs behind me, lying lifeless on the bathroom floor because even a bath took too much energy. Above all, I wish my 30-year-old husband never had to help his wife get dressed, or bathe, or go to the bathroom. I couldn’t get out of bed or do anything for myself, and still, I never thought of myself as being disabled.
Two years later, the “worst” part had passed and I regained some strength. I no longer needed the wheelchair, but the cane was not enough. I fought against getting forearm crutches for so long. The thing about mobility aids is that it’s not like breaking a bone, where a doctor points out the fracture on an x-ray and sends you home with a cast, crutches and instructions. There is no cut and dry guidance for damage you cannot see. It was something I had to decide for myself based on what my body needed. That confusing struggle was made worse by the years of doubt and judgment I experienced not only by doctors, but by family, friends and acquaintances. Those voices don’t just disappear. They stay with you, telling you “you’re being dramatic” and “it can’t be that bad” long after the words are actually spoken. It didn’t matter how useless my right leg was, I often wondered if I was faking it.
When I found the courage to try the forearm crutches, my worries disappeared. I could walk farther, faster, with more stability, and most importantly, with much less pain. Those crutches felt like heaven, and I was ready to conquer the world. That is, until I used them in public. I could hear the whispers, and I could see the stares; both from people I know and those I don’t. Strangers occasionally walked up to me and asked what was “wrong” with me, as if they had a right to know my trauma. I wonder how they would feel if a stranger demanded they share their deepest wounds and darkest moments? Each time it was a reminder that, to others, I am my crutches first and a person second.
I quickly learned how much ignorance surrounds disability. I’ll never forget the first time somebody called me “crippled” in a derogatory manner, or the person who saw me walk 10 feet unassisted and exclaimed that my legs were cured, or the man who saw the mobility aid and assumed I had an intellectual disability too. The world tells us that disability is all-or-nothing and only looks a certain way, but in reality, there are many areas of grey and invisibility, as well as variations in function and ability from day to day. Able-bodied people don’t seem to understand that people with disabilities have good days and bad just as they do, as well as our own strengths and weaknesses.
To this day, I hate walking and using the crutches in front of people. But when I started to recover from this illness, I became more active, and the crutches made it possible to do the activities I once loved. It may take me an hour to walk a mile, and it may be extremely painful during and for several days after, but the crutches allow me to rockhound and go on short hikes. For a while, I had accepted my limitations. I even made lighthearted jokes about them. When on adventures and stepping over a log, I called it “forearm crutch parkour.” My husband lovingly referred to me as “Legs.” We joked about my left foot and my “derp” foot.
Then I saw myself walking in a video. The unnatural way my leg moves was painful to witness, and it forced me to confront the reality of how bad my leg has gotten. As I continue increasing my activity level, I’m becoming more frustrated with my limitations. It is no longer enough to just not be stuck in bed. It doesn’t seem to matter how much yoga I do, how many times I try physical therapy, or how much progress I make with CIRS treatment, this is the one thing that’s not getting better. It doesn’t matter how badly I want it to change, I have no control over it. For the first time, I am realizing that this is not just illness, it is not temporary, and I really am disabled.
There’s not always an official moment of becoming disabled; you don’t receive that title the way you receive a diagnosis. Five years later, I’m still adjusting. I still struggle with those echoes of doubt and judgment, as well as our society’s ignorant view of disability. It often feels like the world refuses to see people with disabilities as anything other than our challenges. I don’t want to be pitied and I don’t want to be an inspiration, but those seem to be the only two categories in which people with disabilities are placed. Able-bodied people are defined by what they are, why must I be defined by what I am not? I have a lot to offer the world, if the world would only let me.
That’s why I’m grateful for people like Edgar and Rosie Rodriguez of Resilient Squad, Syren Nagakyrie at Disabled Hikers, and Wesley Hamilton at the Disabled But Not Really Foundation, who remind me that I don’t have to be defined by my challenges, limitations and adversities. Yes, I am disabled, but I am so much more. I am a rockhound and hiker; a writer and embroidery artist. In yoga practice, I can fly in crow pose as well as any able-bodied person. Yes, I am disabled, but I am no less complete. My future happiness and fulfillment in life is not predicated on whether or not I have fully functioning legs. I have always found a way forward, even when that meant I had to crawl.
Yes, I am disabled. But I am still capable.