I always want to be so politically correct and proper. I want to be motivating. Inspirational. Selfless. Encouraging. Supportive. And I work so hard to be that person daily. But to be completely honest, some days I just lack the capacity to be that way.
I believe that COVID is real. I believe that the consequences of COVID will continue to be uncovered. And let me say that I whole-heartedly believe that COVID has long lasting health effects that are unknown and being discovered daily. I guess that I just wish someone was looking that hard for me… for my rare disease will ultimately take my life, too.
And here’s the story that inspired this posting:
I was scrolling through social media and came across a post a friend had made. She was discussing and making bullet points of the hardships that she and her family has been experiencing while she has been recovering from COVID19.
All her statements were and remain valid.
She was discussing how she couldn’t keep a promise to her child to start an extracurricular activity; teach her child how to ride a bike; how there was no cure for her in sight and all of her emotional struggles are happening after 100+ days.
And all I could think while I am reading her post is…. You think 100+ days is bad! Try 4+ years!
No cure, no treatment options, Nothing!!! Only waiting and hoping that people will care enough to open their hearts and wallets to help me.
She is talking about grieving for her lost time in the last 100+ days and I am truly sorry for her.
I’m envious of the money her disease will garner… But where is the outpouring of support for people like me?
Where are their bleeding hearts for my children and their lost time with their mom?
Where is their compassion and empathy for my parents who are grieving for their lost time with their daughter?
I have already lost a parent to this disease and my children are going to watch me travel that same path and all I want is help to prevent that horrible, painful, experience of watching your parent waste away.
I don’t want them to watch me be bedridden, with machines breathing for me.
If every person in the United States gave 1 dollar each, scientists could find a cure for people like myself, potentially my children and grandchildren and so many others with rare Muscular Dystrophies!!!!
I just want to LIVE!! I don’t think that is such an unrealistic expectation to have.
Isn’t that all that my friend wants? To enjoy her life with her children as she was meant to? People suffering with the long-term side effects of COVID will have more scientists and research being done for them than I could ever hope for.
And understand, I do want them to have a cure! (I tend to have random movie scenes pop up in my head and at that moment… I picture Donkey jumping up and down saying Pick me! Pick Me! from the movie Shrek) I want them to have so many treatment choices that they know ultimately one will work for them.
But I, too, want that same chance; just need to be seen. Be heard. Be helped.
I want more than anything to be empathetic to so many non-MD people when it comes to their own experiences and hardships with their health.
If I can’t give people empathy when they are going through an emotionally taxing health problem, then how can I expect them to have empathy or compassion for my own health journey?
All my emotions really come down to wanting inclusion. And I can only hope that as people continue down these uncharted paths of COVID recovery, that they will begin to have an understanding of what so many of us in the rare and ultrarare disease community experience; and will continue to experience without their help and support.
At what point is my suffering, and others like me, enough to drive the larger community to support my search for a cure? And not just the people who know me personally?
