A Snapshot Into My Life: A Matter of Pride or Survival?
*This was originally written in March 2023 and has lived in the "Notes" section on my phone. The injuries and conversation I write about were from that time and while I wanted to share this story because I do feel that there is value, I did not want anyone to be identifiable.*
Life is filled with responsibilities and choices everyone has to make. When I was diagnosed with moderate-severe bilateral congenital sensorineural hearing loss on September 28, 2000, I went from having essentially very few responsibilities as a 4-year-old child to being semi-responsible for my hearing aids. Of course, my parents were (and are) tremendous role models who showed me the ropes of self-advocacy, but for a 4-year-old child? Don’t count on them to remember to take off their hearing aids before a bath or going swimming! Double check their ears!
I distinctly remember sitting at the dining room table trying to put my hearing aids on when… oops! I dropped one of my hearing aids into a bowl of milk, having just finished my breakfast. I believe I was around five or six years old. Thankfully, my dehumidifier for my hearing aids soaked up the moisture and I did not damage the hearing aid, but as you can see growing up deaf was far from glamorous or free of mishaps!
For most of my young life until age 13, that’s what everything looked like. At an age-appropriate rate, my parents, teachers, and medical team had me assume more and more responsibility over my hearing aids and eventually, bilateral cochlear implants with the end goal being to troubleshoot any possible problems with my devices on my own before I went to college. With time, I became proficient. Not perfect, but I could diagnose a lot of issues with my devices to determine if it was a failed part or if the device itself no longer worked. My parents were always available and my medical team would help if I couldn’t diagnose the problem. Their mutual goal was for me to be independent in my hearing healthcare.
When I sustained my Gardasil vaccine injury on August 24, 2012, aged 16, this was the start of feeling the weight of the world fall to my shoulders. I had an extreme autoimmune response and while getting a low-grade fever is not unusual with vaccinations, my fever was abnormally and dangerously high. For years, my parents and I fought for answers and the proper diagnoses. Doctors questioned my motives. My parents doubted the legitimacy of my conditions at times (can’t say I blame them, as things did not make sense for a while), so sometimes, I found myself truly fighting alone. God was there, but He wasn’t sitting in the exam room or procedure room taking notes and asking questions of doctors. That part was up to me.
Today, 11 years later, those diagnoses number over 45 and I do nearly 100% of my coordination of care, file appeals, ask for new prior authorizations when I know one is going to expire, schedule and track all appointments, and maintain insurance coverage. A series of tasks that most medical providers do is something that I have been doing since becoming a legal adult. I order my feeding tube supplies each month and manage my nutrition through my J tube. I am responsible for making sure to refill all of my medications on time while taking it each day, and the most empowering, yet intimidating part is making sure all those medical devices work properly. Even when I do everything “right,” things still go wrong. Very wrong.
The learning curve has been steep at times and some days, I swear it feels like it is getting steeper. Learning to live in chronic pain was one of my biggest hurdles. A 6 or 7/10 on the pain scale that no one likes is pretty typical for me and conventional pain management isn’t really a thing in my life. I have tools like migraine medications, ibuprofen, Tylenol, and muscle relaxers, but nothing that truly “targets” the pain effectively. Medication allergies compound my issues, as I’m allergic to more pain medications than the ones I can probably even take! Sometimes, I am forced to put a smile on, and go about school, church, volunteering, work, physical activity, etc. in a level of pain many would probably find difficult to function at. After all, pain perception is highly subjective.
It’s pretty hard to rattle me… but if you do or I get rattled by my body, that’s when everyone else should be concerned. I’m notorious for saying “I’m fine” even when I am not to spare myself from 20 questions, but I don’t see the point in getting all worked up. Panicking is not my default setting when things are going wrong, so if I am panicked, something is so far outside of “normal” for me, my body feels “foreign.”
I’ll get injured and just because I show up at the next scheduled event, the world does not seem to understand that the pain, injury, or symptoms are still just as valid, even though my attendance calls the validity of my claims into question. Some people truly do not understand this and it’s not with malice that I basically get interrogated. That would be exactly why I say “I’m fine” or “Hanging in there!” I get sick of 20 questions.
If I panicked with every injection, injury, allergic emergency/anaphylaxis, adrenal crisis, hypoglycemic emergency, status spasticus/muscle spasm attack, dislocated or subluxed joint, first of all, that would just make the situation worse and second, I need to treat the emergency. My doctors have trained and equipped me to deal with my emergencies; even if the treatment is only partially effective or only buys me enough time to get to medical care. People ask me how I can stick an epi-pen in my leg or a pretty big needle full of steroids and the answer is pretty simple. If I don’t, breathing will get difficult (possibly even impossible) or my blood glucose will drop, I’ll get sweaty, my heart will race, and my blood pressure will drop as I head towards an adrenal emergency. In those cases, I can guarantee you that you can’t get the medication into your body fast enough and the medications definitely don’t seem to work fast enough!
I’ll be honest, humility is NOT one of my finer qualities and that’s something that I am working on with and through God. However, trying to control myself is a big deal during crisis situations, so if I accidentally rip my PEG-J out of my abdomen and prioritize controlling the bleeding from my mouth, abdomen, and a small cut on my arm to get home to reinsert my G tube balloon, it doesn’t mean it didn’t happen or that it wasn’t serious, but it is a time-sensitive matter. Speaking the truth in love (which man, is it hard to hear sometimes even though we are called to do this as Christians), how I handle my health has been called “proud,” even though I was simply voicing a concern and stating the facts.
The individual did say I could be upset, p***ed off, and some other things I don’t feel the need to write down here (you get the gist of the conversation). Yet, I didn’t feel those emotions towards the individual. Rather, I felt disappointed with myself, a little scared, and I was honestly sad. I had done what my doctors had told me to do to the best of my ability, but in a situation where I was trying to do everything “right,” it went wrong. My default, “pre-programmed” response was wrong. This elaborate plan customized by over 35 doctors to fit me was wrong… and I felt terrible.
When life knocks me down, I have learned to stand up slowly. The pain from being knocked down is there. Crawl if I must, eventually, I find my way back to my feet. The punch to the gut might double me over in pain, but eventually, I figure out how to stand up again.
Again, this begs the question am I acting out of pride or survival aka “fight-or-flight response?” I guess it depends on how you look at it. All I wanted when I was in shock from my injuries was to be home, tend to my injuries, and put my bloody clothes in the wash. No one else was putting that feeding tube back in. I know I was in shock, since I can’t remember exactly how many people were around me and some other details. I think it was four total (possibly three), but I only remember the first bystander was wearing a red shirt and was a female. I wouldn’t wish the circumstances on anyone, but I’m not hosting a pity party of one here.
The reality is that I make medical decisions every waking hour about how I manage my health and healthcare. If I screw up my insulin dosing or miscount my carbs, I’m at-risk for a hypoglycemic emergency. If I move the wrong way, I can dislocate a joint. And so much more…
All of this medical knowledge is “pre-programmed,” because my medical team and life experience has taught me what to do. There’s no manual on what to do when the “programming” is wrong, but I make more life-or-death medical decisions daily for myself than many can even begin to imagine. That’s what happens when you have to manually do the job of multiple organs! It’s more work and often, high stakes, but I choose to keep on moving forward. I cannot control other people or even how my body responds to therapies sometimes, but I have learned I can always control my attitude! After all, “My body may be broken, but my smile always works.” -Mary Frey