Last night as part of my boyfriend’s birthday gift, we attended a St. Paul Saints’ baseball game in downtown St. Paul, Minnesota.
Anyone who knows me even a little bit knows this is a huge departure for me – I truly don’t like organized sports. Hey, I was just there for the hot dogs! And of course I wanted my boyfriend to have a good time. I did startle him a few times, like acknowledging that a certain pitcher had challenges just because he was a leftie. I blame it on being forced to watch games on TV with my family.
Attending a baseball game is a challenge even though we deliberately chose to not go to a major league game and instead went to a much smaller minor league stadium. I had hoped that there was designated parking so we could snag a handicapped spot and not walk too far, but no such luck – instead we had to pay $20 for a 2-block walk. The thing about sports fans is that they often don’t know how to relate to long-term disabilities; I had a lot more people banging into me than I normally do when I’m out in public.
When we got to our section, a not-so-bright dude decided to set his beer in the middle of the staircase leading down to the section, then when I started to try to step around it with my cane, it took him a few moments to retrieve it – like “Oh, you’re going to use the stairs instead of vaulting to your seats?” Our aisle seats were great for me to sit down immediately, but terrible in terms of people coming and going in the remainder of the row. I should have thighs and buns of steel from how many times I had to stand up for others passing by.
The weather in Minnesota is at its peak heat and humidity, and we are threatened with thunderstorms every fourth day. The instability of the barometric pressure also affects whatever craziness is going on with my cerebrospinal fluid pressure in my brain, so I had the full Quasimodo going on with my face last night at the game. I could tell the young teenaged couple next to me was uncomfortable; the young lady would pretend to look at something in the outfield in my direction, but would study my face and specifically the left eye and forehead.
I always know when people stare. There is a hush that follows me in crowds, and of course we humans can sense when eyes are on us (I mean, c’mon, we are always able to detect monsters in the closet from a very early age, that Spidey sense never leaves us). I might as well have the left eyeball hanging down my face secured only by the optic nerve like a B-movie horror film.
But a baseball game with thousands of people sitting around us isn’t a place to turn to someone who is rudely staring at me to say, “Do you have questions that you would like to ask me?” It isn’t the time for me to talk about how just in the last week the university that was assigned to me through the NIH Undiagnosed Diseases Network declined my case, saying my doctors should “consider myasthenia gravis” – even though it was “considered” and ruled out twice before, and the university had proof including the tests and write-ups.
It isn’t the place to talk about how, because my case was turned down, my disability case is also likely to be turned down because my disease doesn’t have a proper name or documentation from the NIH saying my disease is being researched. It isn’t the place to talk about how my primary care doctor won’t advocate for me at all because she feels like she’s “not enough of an expert” – but an expert at what, no one can say, because no one knows what I have, but everyone knows I’m in bed for at least 20 hours a day to keep the CSF from pooling on my brain stem.
It certainly isn’t the place to talk about the strong language I used when I wrote a blog post regarding how I was treated in the process.
I’ve decided that I’m not going to apologize for certain things anymore.
Tops on my list is that I fully acknowledge that I swear like a truck driver, especially when I’m in pain, and if you’re old enough to work a full time job, you can handle my curse words (and that includes my physical therapist – you know who you are!).
Next on my list is that if I specify that I’m not looking for advice but I get it anyway, I don’t have to apologize for saying no thanks. I’m already stressed out from having to deal with all of this insanity with my health, but then I have to deal with a person who is convinced they have an answer. In reality it’s highly likely I’ve already researched/tried that solution 5-6 years ago, but then I’ve got to spend loads of energy defending myself and explaining why it’s not going to work.
Lastly, when I ask for something and it’s denied for no good reason, I’m allowed to be angry.
I’m allowed to be angry with the NIH and the university for neglecting me. I’m allowed to be frustrated with my doctor for not even attempting to advocate for me. I’ve only just realized that I have PTSD from all of the doctors/procedures I have endured, which explains why I cry easily at appointments and my blood pressure sometimes skyrockets, and why I usually have a sleepless night before a doctor’s appointment without fail.
I don’t think I should have to apologize to doctors for making them uncomfortable at this point.
Lest you think my nametag now reads Debbie Downer, rest assured I still try to look for fun stuff to keep me occupied and get me out of my apartment. In a few weeks we will return to the field where we saw the baseball game; this time, though, it’s for a cat video festival where as many as 10,000 people could converge to watch cats, cats and more cats!
Hey, it’s the only way I can be guaranteed not to be consumed by anaphylactic shock within 5 minutes of exposure to a kitty pile. I so need a kitty pile right about now.
About the Author: Patient Worthy Contributor, Chelsea. Keep an eye out for posts from her as she navigates the gnarly dating world, chronic illness and searches for a diagnosis and check out her blog, The Sick and The Dating.
