Sheryl over at A Chronic Voice hosts a monthly get together for people with chronic illnesses to write about certain topics. This month we’re talking about: Unlocking, Limiting, Studying, Watching, and Healing.
UNLOCKING
Covid- 19 lockdown seems like it’s going on forever. Even though there are no laws in place keeping me at home, I feel that I need to stay there in order to preserve my health and the health of my asthmatic child. It’s actually much harder to deal with than full scale lockdown, because everyone else is out living their normal life while I’m stuck at home. Because everyone else is ignoring the fact that 10,000 people a day are testing positive for Covid, I had to make the decision to keep my kids in virtual school. I’ve been very conflicted about the decision, and I wish that we had effectively dealt with Covid-19 earlier so that I didn’t have to make this choice.
All this had lead me to spending a lot of time thinking about disability and how it affects my life and my children’s lives, and how little most people even know about it. Covid-19 has revealed a lot about American society, and unfortunately many of the revelations have not been positive. This has made me even more determined to be a more vocal disability advocate than I am currently. I don’t know that I’ll ever change someones’s mind about the value of disabled people, but I’m sure going to try.
I don't know that I'll ever change someones's mind about the value of disabled people, but I'm sure going to try. Click To TweetLIMITING
My natural reaction to limits is to fight them because I don’t like the idea of being limited. However, chronic illness has taught me that embracing my limits can help me live a better chronic illness life. For example, I love hiking and climbing, my body not so much. However, I’ve learned that if I limit my climbing I can go hiking occasionally as long as I don’t over do it too much. I don’t have to give up something I love, I just have to compromise on my limitations.
I long ago accepted the fact that my health limits me from doing the things I often want to do, but I've learned to not be controlled by those limits because I've learned to make accommodations. Click To TweetWATCHING
I’ve been watching the world lately. At the beginning of the Covid-19 I was glued to the news and I read every scientific study I could find about Covid. I value science and I wanted to be as informed as a possibly could be. At the same time I watched via social media many of my contemporaries doing the exact opposite. I watched as they made false claims so they didn’t have to be inconvenienced and they didn’t have to think about other people. I called people out for publicly saying they didn’t care if disabled people died because they didn’t have real lives anyway. Watching all this didn’t put me in a good place so I decided to switch to listening and studying.
STUDYING
I’ve long loved Brene Brown’s work, but I’ve never dived into it because I haven’t had the time. A month ago I decided that instead of despairing about how horrible people are that I would study Brene Brown, and that lifted my soul. Her focus on courage and vulnerability taught me that even though I feel alone right now, I can be brave. I was ready to abandon the idea of vulnerability after I tried it and it massively backfired on me (I called someone out for saying that they didn’t care if people with chronic illness died in the pandemic. After I shared how her saying that made me feel, several other people joined her in her beliefs and they doubled down). Brene Brown taught me that I shouldn’t abandon vulnerability when it goes badly, because that’s how we connect to other human beings. Above all things, I never want to give up on trying to connect with human beings, even though they can sometimes let me down.
HEALING
I don’t really have the words for addressing healing right now. I’m working on healing from the devastating comments about disabled people that have been sent my way from people I thought cared about me. I think healing from this will take some time, but I know I’ll get there eventually.
What a crazy couple of months it has been. I’m glad I had a chance to reflect on what I’ve done and what I’ve learned.
Firstly, I think you did a fantastic job covering the prompts. I especially liked the exploration of limits, and actually embracing them and negotiating with what you can/can’t do rather than having to give up everything you used to love doing. Secondly, I’m so sorry about what happened. So you said to someone that it wasn’t cool to say they didn’t care if chronically ill people died during the pandemic? Was this online? Was this one person or a few, do you know them in offline?
I don’t know at to say. I can’t get past their disgusting nonchalance about the value of human life. If you didn’t call them out about it you would have stewed on it and it would have eaten you up knowing it wasn’t right and something should have been said. But someone who is capable of believing and saying those sorts of things isn’t going to have anything nice to say when they’re called out on it because they sound pretty evil. I’m just sorry you got caught up in it. I’m always around if ever you want to talk; no pressure, but if you ever want to rant just get in touch. For now, continue to read, to focus on the things you enjoy, distract yourself from the horrors in the world (and the certain horrible people therein!) and take good care of yourself.
Caz xx
It was online, but I do know them offline sadly, even considered them a friend. Needless to say I’ve cut off contact completely, I don’t need that in my life. I’ve had some time to process and I’m starting to feel more at peace, but I think real healing will just take time. Thank you for your lovely comment.
Hi Shelley, great job at covering all the prompts so well and concisely this month; it was a great and relatable piece that will resonate with so many living with chronic illness and chronic pain. Especially the points you made regarding limiting – I also tend to ignore my limits, push past them and just make myself worse and so had to learn to embrace them and make accommodations instead so I don’t have to lose everything I love to do. So sorry you had to hear and deal with such insensitive comments from others concerning those with chronic illnesses and disabilities, is truly awful. Take care for the rest of the month and look forward to reading more from you soon x