Tag Archives: community

Dear Fellow Patients,

I don’t know if I’m the only one, but I think A LOT about the last two years. The pandemic and everything that came with it changed my life forever. For many reasons.

Many nights I lie in bed and flash through defining moments of the pandemic. I think about my responses and my feelings at the time. I doubt myself; wonder if I was thinking the right things. I always come back to one specific moment. It is one of the biggest regrets I have.

I was sitting in the lobby of the oncology ward at the hospital. It was the height of pandemic panic and the chairs were strictly distanced and parted by red tape and angry red stickers on the floor. A young woman came and sat at the other end of the room. She got out her phone and called someone. And then she started crying and said “it’s cancer mom, it’s cancer.” Then her crying got my intense. I could hear her sobs and her words but she was many red stickers and tape away from me. I was locked in my seat, but I was feeling all her emotion. (I wasn’t just sitting on the oncology ward for no reason after all). I could feel my own eyes well up with tears as I was witness to this incredibly traumatic moment in this woman’s life.

Once she had hung up, she sat numbly for a little while, tears still coming down her face. Then she put her phone away, put on her backpack and walked away. After she was gone I went to the restroom and cried my eyes out. For her. And also for another reason. I was so incredibly angry at myself. That whole time I had sat frozen and terrified of the meaning behind those red stickers. Had it not been pandemic times, I want to tell myself I wouldn’t have hesitated to run over and give her a hug and ask her if she needed anything at all. I would have told her it was going to be okay even if it didn’t feel like it in that moment. But I didn’t do that. The rules were so strict at this point. We were all so scared of catching COVID. Especially on an oncology ward. I was afraid that I would then make her sick or her me. That maybe me violating social distancing would make her even more upset.

But two years later I still regret everything about that moment. I should’ve gone for it. I should have let her see I was crying with her. That she was not alone. Because in that moment she must have felt so so alone. I should’ve stepped over that tape and on all those stickers and moved the chair and been with her. Human to human. Allow her to cry on my shoulder instead of into nothing. Reassure her. Hold her and her terrible news to make it a little less heavy. But at that time, I didn’t. One might say that the fog of the pandemic was hanging over me so intensely that it actually prevented me from seeing what the right thing to do was. I regretted it immediately as she walked away and I still do.

I know how I would do it now, COVID or not. I vow to remember that young woman so that I can do the right thing next time. Isolation in times of crisis is one of the most painful things that someone can experience. Be with each other. Hold each other. Love each other. Family, friends, strangers. Everyone.

Photo by Lisa on Pexels.com

Disability Pride Series: Conclusion?

July is coming to an end. Just because Disability Pride Month will be over, doesn’t mean that people with disabilities should stop talking, advocating and educating. On the contrary.

This July was my first pride month, acknowledging my disabilities, writing about them and engaging with the disability community online. I was inspired by what I saw and read. I hope that one person might have read my posts and felt something similar.

During this month I have also engaged with stories and experiences of the negative sides. The reasons why people are unable to be proud of who they are with their disability. Stories of abuse and ignorance and experiences that highlight how inaccessible the rest of the world can really be. It is precisely because of this that we have to keep our voices loud. Every month of the year.

I don’t feel pride in myself every day. In fact, there are still more days a week where I feel like a burden and a sense of shame about my differences than there are days where I feel confident to live without trying to hide. But being able to see the way other people embrace every part of themselves makes me feel less alone.

Disability rights and accessibility has a LONG way to go. It is difficult to feel proud when every day you are put down in one way or another, whether it be the simple inability to get somewhere or participate in something due to inaccessibility or actual bullying or ignorant comments from another person. It can feel like the whole world is against you. And that makes it so hard to claim your place in it and claim it with pride. And yet so many people have done so and keep on trying to do so every single day despite all the challenges. Those are the people I look up to and hope to be one day.

July is over but my journey of self acceptance is only just beginning. Good luck on yours.