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?
My mom has this phrase... "Anyone can get an A once, but keeping an A? That is hard work." That is the best phrase I can think of to relate to maintaining a positive outlook.
I think being positive for a moment or an hour is easy; repeating some inspirational quote you read online that rings true. Or having a phrase on your phone as a reminder; having a quote of the day on your desk.
But let's just call a spade a spade. Feeling positive from a quote is short-lived. But staying positive all the time? Hard... very hard. And somedays are much harder than others.
When it comes to having a chronic illness that has no treatment (yet), some days are so much more challenging than I expect. We have all had bad days or weeks or even months that overwhelm us with some feelings of hopelessness. But remaining positive when each day feels so different, yet so same, as the day before, well, that's another matter.
I get through those days because I believe in embracing those feelings, whether positive or negative; no matter the cause. Have a pity party. Worry about tomorrow... Live in the pity party. Eat that tub of ice cream...binge-watch your favorite series. Stay in sweats for two days... whatever it takes.
But when the "balloons of your party" have fallen to the ground, the ice cream is gone, .... its's time to get back up and try again. I remind myself that it's about not giving up on the long haul. It's about the bigger picture. I think of the people who give to the Foundation because they intuitively know that the unknown is always scary and fear can be paralyzing at times.
Truth be told, an unknown timeline with my disease gives my fighting spirit and confidence more than I bargained for. "Keeping the A" is so much harder than I ever thought it would be. I don't believe I give myself an A everyday. Sometimes it's a B- or a C+ because it's all that I can muster.
But I can never allow my fear to outweigh my faith that the unknown timeline may hold positive outcomes. So I sketch my picture and never give up on "keeping my A".
With the end of summer here and the wonderful beginning of autumn, the season change brings many mixed emotions for me.
August is the month of my father's birthday and also the anniversary of his death. I feel those days so intensely now that this disease has made its presence known in my own body.
What I wouldn't give to have 1 day to sit beside him?
I am not sure that I would ask him about his disease or even what body part failed him first or what path it took... I think I would ask him what he would have done differently.... Tell him all the things that I could have used his guidance on.
Laugh with him.
You know sometimes, it's the small things that really hit me the hardest; like I don't know what my father's laugh sounded like. He had spent so much time in the hospital and was trached (the hole in your throat) for most of my life and what time I spent with him, that he would slap his knee and kinda move back and forth in his chair to emphasize his laughter. (The reason his trach matters is physically speaking, he would have had to plug the hole with his finger to prevent the air from escaping through it in order for the air to move through his vocal cords to enable an actual sound of laughter).
But my husband and I chose to get married in the month of August because we thought we needed to add some positivity to the month. It was just too much sadness for one person to carry, so this past August we celebrated our 14th wedding anniversary.
September has always been fun for me as it has my birthday- woohoo!- and the seasons start to change. From the warm and humid to the cool and crisp accompanied by the colorful fall foliage just makes my soul feel at home.
However, since I was diagnosed, my birthday makes me wonder what the next year brings. What abilities will I have this time next year? Will I still walk without assistance? Get up from a chair without someone lifting me? Continue to work in a career that I have loved my entire life? Or will my body tell me I am just kidding myself? Will the memories we all think we have time to make only become one I can dream of? Will progress be made that can slow this disease? Will any answers have become clear? Any solutions or ideas?
And then I look at my children who keep me on my toes, both mentally and physically, and realize that they deserve a mom who will embrace life to the best of her ability, no matter what device gets me there. My husband deserves a wife who he can enjoy life with, no matter how many times he has to carry me to get there. My parents deserve a daughter who exemplifies the fighting- never give up- have your down days but dust your jeans off and get back up- spirit that they tirelessly fought to teach me. A sister who is going to grow old to tease my brother as siblings are supposed to. A friend who will smuggle your favorite alcoholic beverage into your nursing home so we can celebrate our 50 years of friendship.
So yes... it appears that with all things in life, no matter what you have going on, it seems like there is double edged sword ready... waiting around the corner.
Unless you choose to grab it by the handle.