This is me.
When I’m finally tired of having no independence.
When I’m finally tired of dripping fatigue.
When I’m finally tired of unrelenting pain.
When I’m finally tired of losing everything I love.
When I’m finally tired of being tired.
This is me in bed with no one in the world knowing or perceivably caring - trying to live through the physical and emotional hurdles a disabled body can offer. This is me when the sunlight winking through the pursed blinds is still too much of a witness for me to bear.
I never want to be seen as only visiting amazing places or wheeling and dealing, because many days this is me. In bed. Inconsolable, and overwhelmed by my body and the interwoven emotional strings.
I have an extremely rare and incurable muscle-wasting condition, called GNE Myopathy. It’s been leading me to complete immobility for over 20 years. I’m in the latter stages of this process and I'm reminded of this every second - constantly prodded with pain and discomfort as an unwitting witness to growing weakness in every subtle move left. There is no break. Ever. Many days I wake up in dread of what the day is going to physically bring. Most nights are preceded by the same.
While the passions and explorations I share are truthful, most of the time I’m doing basic daily life; at home working or sick or solving a stream of obstacles and struggles related to my progressing disability. Many times this can involve a bed.
When your body feels ruled by your health or disability, it's easy for the side effect to be shame or feelings of worthlessness. Intellectually, I know it’s not my fault when I have to be in bed or that I get tired or that I move so slow, but it’s terrible what we do when measuring ourselves against arbitrary guidelines, isn’t it?
As this thing has progressed the last few years - speeding up after my mom and dad died - my bed has become a more frequent cradle.
My bed can be a place of retreat where I anonymously writhe in pain. It can also be a source of intimate pleasure - seducing the pain away, even if just for a moment. It can be a place to hide from the world and even myself as I skim through trashy TV or shows to avoid reality. My bed can be a place of loneliness yet also a place to connect to the world from when I write and share. My bed can be a place of work for the day as I attempt to achieve something despite the fatigue and pain. It’s a place where creative ideas come to mind, especially on the nights of insomnia. As I struggle to archive ideas or words and lines speaking to me into my phone as easily and independently as I once was able, it’s also a place of frustration - where thoughts die as quickly as they come before transcription.
For years, I’ve had this desire to document. I’m constantly writing down ideas, thoughts and questions to explore, like it’s my last chance. I’m not sure why, but my guess is it’s because I know writing & sharing stories also has a shelf life. Of course, there will be technology that will assist me…but still…it’s another loss.
On days like this, in bed while the world moves in a highly productivity motivated society, it's easy to feel like a failure and small. I can go through a process of self-loathing, listing all the things I’m not or can’t do. This is when I use Jason as a sounding board and he reminds me on cue what I tell others—that none of it actually matters, and if you have an “unproductive” day, week or even month(s), the world still turns. It’s ok. This is life.
When I think of my condition beginning in my teen years, I remember how much shame I had. There were no answers. No one believed my cries, and this shame has traveled with me ever since.
In high school when I was kicked off the Varsity soccer team when it was more than noticeable that something was different with me, there was shame. Everyone thought it was me not being enough, including myself. In college when I was getting worse and searching for a diagnosis while balancing two jobs to put myself through school, I felt worthless and alone. There was shame. I was trying so hard to keep up in a very competitive design program while trying to hide what was happening, but my body wasn't following and I didn’t know why.
When I finally received a diagnosis, understanding that I would be disabled for life and that it would be more prolific in the future, I felt relief, but then instant worthlessness. I knew the game. How was I ever going to measure up in a non disabled society?
I’m a self assured person, but I have a habit of not feeling good enough. I’ve always been this way. Perhaps extracted from the shadows of abandonment that an orphan life provides. As a disabled person these feelings were amplified. I’m a doer, a high energy individual who acts on her passions and feels the need to create, but a disability means far less control, including how I feel on the daily, which is often tired, provincial, and in pain.
In an unpredictable or chronic body you can be traveling and doing a lot one day, but in the same body, on a different day with a different drive, washing your hair is enough to destroy you. It’s easy to feel useless when you can’t move or you feel like you’re not doing enough. It’s easy to feel guilt when fatigue overtakes you, when it takes everything in you to appear “normal” while inner turbulence is on constant alert.
.I can get down on my condition and disability for perceivably inhibiting what I could be. I’ve been feeling this way a lot lately. Trying to be more, trying to be less, just trying. Internalized ableism tells me, “if you can’t do this or that like you used to, you’re not enough.” or “if only this, if only that, then I could be this…” Then I remember my perspective is because of my disability, not in spite of it, and what I could try to be is just me.
When we compare ourselves with the world, when we berate ourselves on the guidelines of “productivity”, I have to ask what does it mean to be productive? We’ve been taught if we are not physically performing or contributing to a capitalistic structure, then we aren’t worthy. But who wrote these rules of productivity? Why is our well-being or being still not productive? Why is living in the moment with no conditions not productive? Why does everything have to be attached to a result? Productivity has to mean more than this.
Being in a committed battle royale relationship with your body is a humbling experience. The humility that comes from the profound realization of the fragility of the human form can be difficult to accept. When I wasn’t disabled and struggling with health issues, there was an arrogance, an ignorance to impermanence because you don’t think of it. Because you don’t have to. Because you’ve never had to.
In the empowerment age it’s important to share the entire picture including the loss and grief, because no matter how much pride or confidence one has, grief and sadness are very real byproducts in the journey of life, and this includes going through health issues or traumatic change to one’s physical status.
Typically, I reserve social shares for interests like art, traveling, highlights, advocacy and lamenting over the human condition. My reason for sharing is to advocate for rare diseases and disability, and part of this is sharing what inspires and makes me who I am so that others can know me, and then maybe see disabled as “normal” and worthy because we are. Because I am. But it’s not all amazing adventures, rounded out learned experiences or finding the magic in the unexpected or difficult, it’s also grief, loss, frustration, uncertainty and fragility.
Some days are just raw and sad and everything is not fine—and In a virtual world of filters, it's nice to say no, not today. I'm not pretending today. It's good to be positive and have perspective, but it's also fine to not be fine, and to feel however you feel, because maintaining a false image isn't nearly as important as recognizing what's true, and then confronting it.
I don't love sharing my vulnerabilities, but it's worse to pretend I never struggle, because this is dishonest and hinders others. I understand why only projecting positivity as a form of advocacy happens, especially for the disability community whose goal is to project constant strength and happiness to deflect misinformed narratives or the fear of looking weak, but representation matters here too. Being vulnerable is being human. If we’re all wandering around pretending we’re not human, then I’m not sure what we’re here for. #kamswheelstravel
For more ♿️ travels, disability and accessibility musings, mini-memoirs & art on my Instagram @kamredlawsk OK