once upon a time

Once upon a time, I was a new mom and probably too new to understand the gravity of the things that were happening around me. When my oldest was around five, she told us if she ever wanted to not listen to the whistle the gym teacher used, she simply covered up her 'good' ear. We made an appointment with her pediatrician, who referred her to audiology, who confirmed hearing loss, who then referred her to Children's hospital. And so, I was introduced into the world of jumping through hoops.

My first boy came with trepidation. Something felt...off. I felt like something wasnt right, things werent good. My boy cried all the time and while pediatricians smiled apologetically and called it colic, i felt there was much more going sideways. So I found the hoops again, and I started jumping through them. I voiced concerns about develeopmental delays, falling behind, muscle development, all of my concerns. I would get a smile (that to me felt condescending) and a reassuring "let's just wait a bit longer" reply. I'm not a "wait" kind of person. I am a now, instant gratification, person. So i found a new pediatrician and after waiting for what seemed like a year, saw the new doctor. Again, I voiced my concerns. Again, I saw the smile. I stopped the smile before it could turn into the words I had already heard. I said I could appreciate that I had very little knowledge or proof of knowledge in the medical world, but that i KNEW my son and i knew that something was not right. A referral was made. I began wondering why medical professionals gate keep.

At four years old, my son was finally diagnosed with cerebral palsy. From that point, jumping through hoops became my life. Whatever he needed, I would show up, hoops in hand, ready to jump through them all if it meant imminent approval for medical devices. We were denied a walker. Hoops jumped, arguments had, papers written, forms submitted. Finally, we were approved. This process was washed and repeated for a medical stroller, a multitude of Ankle Foot Orthotics (AFOs), and finally a wheelchair (that no matter how many hoops I jumped through, we still had to pay out of pocket for portions of the chair---and thanks to friends and family, this burden was light).

I'll admit- once upon a time- I was an excellent hoop jumper. I'd jump moving hoops (the phone tag, the call this person, not that person). I even jumped through hoops on fire (medical necessity denied, here's a paper you can file). I filed papers. I called people. I learned medical jargon. I spoke with the precision of a young lawyer with the acrobaticness of a tight rope walker. I was kind, but firm. I stood my ground and refused every denial that was sent my way.I questioned the background of those who have the power to approve or deny. I questioned their experience, their time with the company...anything I could think of- if they were going to deny my child, they better damn well know what they were denying.

Today, however, I sit here as a failure. It's been 389 days since I have driven a vehicle more than moving it in the driveway. I have bruises all over my body. This past week, I got a deep 2nd degree burn on my forearm. Why all these things, you ask? Because for over 389 days, I have felt dizzy. SO much so that I occassionally pass out. For 389 days, I have been confined to my house, at the mercy of when my husband comes home and takes me somewhere. I feel like a dog, waiting to go for a ride. Go for a walk, you say? What if I pass out? What if I fall and injure myself more than my kids can deal with...why would I put my kids in this position? So I stay home.

Anyone who knows me can attest that I am a homebody, but if you try staying home for 389 days, never having the free will to just go somewhere when you feel like it, I would think you might snap. I know I feel like I am. I feel like I am finally breaking. I have been given so many different anti depressants and anti anxiety meds....all of which have awful side effects and none of which help. I feel the way I do because I am stuck here. Yes I am sad- I am sad because I am stuck in this constant state of dizziness which leaves me stuck at home. Yes I am anxious. Have you tried being confined for well over a year, dependant on any other person to do things you used to be fully capable of doing? I was a doer. I wouldnt ask for help if I was on fire. Now...I am a shadow of the person I knew I was.

By now, I'm sure youre wondering if I have told any medical professionals about my delima. Rest assured that I absolutely have. Queen jumper of hoops has done every song and dance one can think to do for the help I need. I have had countless tests, some ridiculously painful, some traumatizing. I have had more imaging than most people have in their entire lives. I often wonder if I would set off a geiger counter.

What do I have to show for the tests I've endured? a stack of medical papers that all say the same thing: unremarkable. It isnt that I want to have some sentilating disease. I dont. I just want treatment for what is actually wrong with me. I have a deep 2nd degree burn on my arm from getting dizzy in the kitchen and stumbling into a hot cake pan that it took me a minute to move from because it felt like the floor was coming up to meet me and my body wouldnt move.

I feel profound sadness. I feel hopelessness. It's moments like this one when I am changing my bandage on my arm that I get why people want to end their lives of their own volition. No one is really happy with you. You're constantly needing babysat. You need constant rides to doctors, referrals, imaging, etc...because God knows you shouldnt get behind the wheel feeling the way you do. Your kids groan because the plan this year with homeschooling involved trips to cool historical places. Now? We hang out in the yard and around the house. Not the fun time mom promised, huh?

So I write today because I dont think I have anymore hoops to jump. I can advocate for others like a pro- but for myself, I am embarassingly meek and agreeable...and thanks to long covid, my brain fog doesnt allow me to be as articulate as I once was. I forget things all the time and dont remember to talk about the problems I've had over the last few weeks. I need some sort of help. I need to learn how to advocate for myself because if I do not, then I will surely drown. I am tired. How much longer do I have to wait on tests to keep saying unremarkable before someone treats my symptoms vs needing to have tests and imaging and this and that.I have scar tissue in my arm from all the IVs and labs. My arms appear to be those of a very clean but habitual intravenus drug user.I hate having to explain myself. Long covid seems like such a shitty shitty excuse for the state of my body. The hoops I once jumped through are as broken as I am. I am tired. I feel like I can no longer jump through hoops and I dont have the energy to make an argument for my health and well being. I am tired of the injuries sustained from my dizziness. I am tired of sympathetic but non acting medical professionals. I am simply tired.