Ken is a rare disease warrior friend of mine who was recently spotlighted on the Our Odyssey blog.
The story they shared has a message I believe isn’t discussed enough. I’m grateful for their vulnerability and bringing light to the expectation imposed on us young adults living with rare and/or chronic disabilities to have everlasting positivity, and can’t forget the superhero strength and courage.
Here’s an excerpt from their post:
This is Ken ✩
They tell you when your mind is sick to meditate and dive deep into your body’s sensations as a way to anchor yourself, but how do you do a body scan when every muscle and joint is screaming in pain? How do you have gratitude for a body that's failing? At the time, I couldn't answer these questions. Everywhere I went, people told me how strong I was, how they could never deal with what I had; they would always ask me how I stayed positive. I found this quite rude. I never felt strong; I felt weak.
Every day was a balance of energy between the things I couldn't cope with and the life I had planned for myself. Yet the people around me still hounded me, treating me as an inspiration factory. To them, I was just another sob story, a conglomeration of nature's cruelest tricks, so if they could get my secret to staying happy, then maybe they too could find joy in their more privileged circumstances. My question to them now would be to ask why they felt the need to use my pain to uplift themselves? The tough things I went through are not an inspiration for me; they are merely pieces of me that I own up to and love.
It took me a while, but now I’m proud to be weak.
To read the full version click here ➾ Take me to Ken’s Our Odyssey blog post
My Thoughts On Being An Inspiration
When I tell people the superficial layers of my rare conditions and how they affect me, I’m very much glossing over my actual experience. I’ve come to realize people depend on hope and that’s what they want to focus on when discussing my disability. Having to hold space for the actual reality that there’s often little hope is too uncomfortable for most people. Keeping in mind, I’m generalizing here but it doesn’t mean it’s not important to discuss this reality that a lot of us in the rare and chronic disease community face.
In this ableist environment, I’ve evolved to put on a positive front. It’s been a new constant to push the not so pretty, not so hopeful aside. I’ve pushed this suffering under the surface and reserved it for the people in my life that can hold the sacred space for my woes. As for the others, well they say how they can’t believe how positive I am despite it all, how inspiring it is. I’m calling it — it’s a copout. Harsh as it may be, it’s backwards to put a positive filter on the most vulnerable of us so the rest, more privileged, don’t have to feel the not so inspiring content. Well here it is…
The outcomes are rarely positive and our quality of life is often precarious, not to mention our mental health and hard-hit bank accounts. It’s an unfortunate reality that a lot of us face and hope is hard to hold on to. When the more privileged able-bodied folks express how we are inspiring/optimistic/[insert positivity synonym], it often just adds another layer to our suffering. I have to admit though, I sometimes wish their optimism was infectious.
None of what we experience is fair. Often treatments are extreme, like high-grade pain medications, including narcotics (as controversial as they are, sometimes we don’t have a choice). Sometimes more extreme forms of treatment are needed. For example, it’s all too often that the only options left is surgery. To know that there’s no medication or treatment to help you, that the treatments available have many risks. What’s unfair is there is hardly any incentive to develop a treatment that would help so few. It’s gutting.
Personally, it’s a deeply unsettling reality. Especially to know that my life is in the hands of the few specialists out there that believe in a better existence for us. That doesn’t make me a pessimist and I don’t need an injection of positivity to make it all okay.
In true Canadian fashion, I feel the urge to wrap it up with an I’m sorry for not putting my positivity cap on today. But truly, we shouldn’t have to apologize for being authentic or hide behind a veil of optimism.
Have I made you uncomfortable yet? Yeah, me too — got to go grab my neck brace!
Peace Is Contentment
What has helped me become increasingly more at peace with my reality as a young disabled woman is the yogic teaching of ‘santosha’, contentment.
Here are some snippet on this notion from EkhartYoga:
”[I]t doesn’t mean idly sitting back and relinquishing the need to do anything. It simply means accepting and appreciating what we have and what we are already, and moving forwards from there.”
”[T]his may not seem so simple at first — if it were then we’d be all a lot more content with ourselves instead of constantly looking for the next thing that promises to make us ‘better’. This is a difficult practice indeed; it is in our nature to want more, to not let ourselves rest until we’ve satisfied some temporary urge.”
“[R]ealize that peace and happiness lies within.”
What is Our Odyssey?
Our Odyssey is an organization aimed at connecting young adults impacted by rare or chronic conditions with social and emotional peer-support in the hope of improving their quality of life. Their vision is in part to address all of the challenges that young adults with rare and chronic conditions face, to furnish a platform for connection, and supply the resources to enable them to thrive.
I’m excited to announce that my ever-evolving involvement with Our Odyssey continues as I have been crowned the Community Blog & Outreach Lead. Connecting and hearing the intricately powerful lives of my fellow young adults with rare and chronic disabilities has been incredibly humbling and heartening. I’ll be spotlighting other stories from other magical members of the Our Odyssey community. ➾ Be sure to subscribe to not miss a thing!
