Redefining Normal: My Definition

It’s funny. A couple of weeks ago, a friend had mentioned to me that I had to be stressed out with all the changes and uncertainty in my life. I was like “Nah, this is normal for me.” As the next couple of weeks passed I thought about my definition of normal. Now to me, “normal” is a term that should only used to describe the settings on a washer or dryer, but if we are going to define “normal” in relation to my life, it might look something like this…

  • “Normal” is being awaken at 7AM by my Sonic Boom Vibrating Alarm Clock after a great night’s sleep of 2-3 hours. Even if I wasn’t completely deaf, I would still need that giant obnoxious alarm clock to get me moving in the morning. The issue with the vibrating disk on my alarm clock is that it startles me and causes terrible muscle spasms right off the bat, but what choice do I have? I must get myself up somehow!
  • “Normal” is taking my cochlear implant batteries off the charge, attaching them to the processors, putting them on, and “turning on my ears”.
  • “Normal” is getting up each morning slowly, as to not exacerbate my dysautonomia symptoms. This is when I get a sense of whether it is going to be a POTS or OH kind of day. POTS and OH are opposites of each other, so I have two different kinds of days POTS or OH in relation to my dysautonomia. If I misjudge what kind of day it is, it could end up with me passed out on the floor and let me tell you, it has happened. Today is a POTS day, which means…
  • “Normal” is attaching a bike pump to my right tire on my wheelchair to put the air in my right tire, that insurance won’t pay to replace (Oh, that’s a whole other can of worms!). Once I have the air in my tire, I can get in my wheelchair and continue with my morning.
  • “Normal” is racing to the kitchen to get at least 4 large glasses of water into me so I am not so dizzy. These glasses of water usually give me a pretty good idea of whether my stomach is going to be cooperative that day. If water is well tolerated, continue with food and if not, STOP! Liquids only that day.
  • “Normal” is struggling to get my signature yoga pants on around my severely contracted feet. That routine usually ends up with me subluxing my hips, right wrist, or a few fingers. Sublux a few more joints painfully putting on a t-shirt. Struggle for a while to get the only pair of shoes I can wear on my “special” feet with my extra curled up toes.
  • “Normal” is slowly brushing my teeth so I don’t rip my fragile gums from EDS or dislocate anything in the process of brushing.
  • “Normal” is very carefully brushing my hair to minimize hair loss from EDS, malnutrition, or any of the other million reasons my hair falls out so easily.
  •  “Normal” is carefully gathering up all the charging cords that I need for my laptop, phone, and charging power bank. I never know when a trip to the doctor’s is going to go longer than expected or when my body is going to pull its next epic stunt and land me in the hospital. So therefore, I am chronically prepared. One of the other aspects of that chronic preparation is making sure that all my information on my phone health app and on my Medic Alert bracelet are up to date. Never know when that could come in handy, but it has saved my butt before.
  • “Normal” is grabbing my backpack full of materials for class that I packed the night before and still somehow managing to forget something important because of “brain fog”.
  • “Normal” is grabbing my wallet and car keys, which are attached to my Epi-Pens/Auvi-Q’s, inhaler, and Benadryl (allergic reaction essentials), on my way out the door and down the custom-built wheelchair ramp from the house to the garage.
  • “Normal” is struggling reach the button to close the garage door while being seated in the wheelchair (even with my Herman Munster length arms, as my mom says).
  • “Normal” is struggling to get my wheelchair over the gravel in our driveway.
  • “Normal” is having to load my wheelchair into the back of the car unfolded because insurance won’t cover the replacement folding mechanism for my chair which broke after a week and a half of use.
  • “Normal” is using my crutches to awkwardly shimmy my way up to the driver’s seat while on the sides of my feet.
  • “Normal” is going to the doctors for an appointment before classes usually and if I’m extra lucky, afterwards too.
  • “Normal” is going to the infusion center once a month to get my port flushed to prevent blood clots from forming and not getting a blood return due to a kinked lumen.
  • “Normal” is going to class each day and trying to sound educated even when brain fog tries to make you seem otherwise.
  • “Normal” is going to the allergist’s office once a month for 2 injections; one in each arm, of medication to stop you from developing hives/rashes/allergic reactions to weird things constantly.
  • “Normal” is breaking out in hives from water during showers, from your own sweat, or from a blanket to name a few weird triggers. Allergic to life basically.
  • “Normal” is scouting out the handicap accessible ramp, only to realize that it is too steep and not in compliance with ADA laws, but having to use it anyway.
  • “Normal” is feeling your blood sugar drop during class, so you go and get a white chocolate cookie from Starbucks and bring it back up to class. You start to eat it when you start to get sweaty, flushed, and dizzy. The next thing you know, it gets hard to breathe and you start vomiting all over the classroom while your favorite professor rubs your back while you prepare an epi-pen to jab in your leg and some Benadryl to go with it. As it turns out, there were tree nuts in the cookie, even though you explicitly asked for the tree nut free cookies. True story.
  •  “Normal” is having headache/migraine always. Naturally, the severity varies.
  • “Normal” is living in unrelenting pain 24/7, 365 days for many years.
  • “Normal” is traveling all over the country for treatment.
  • “Normal” is never knowing when you are going to feel better or worse day to day, hour to hour, minute to minute. You just never know how you are going to be feeling.
  • “Normal” is putting your pride aside and applying for a handicap placard that you desperately need on bad days, even if you hate using it.
  • “Normal” is doing better research on new specialists than the FBI.
  • “Normal” is knowing more about your body than anyone else, because you’ve had to do extensive research on conditions and treatments.
  • “Normal” is being a walking (or rolling!) pharmacy.
  • “Normal” is setting alarms on your phone to remind you to take your medications.
  • “Normal” is weighing risks of treatments against the potentially benefits.
  • “Normal” is having your medical record and insurance numbers memorized because you look at the hospital bracelet frequently and you are always giving a specialist an insurance card.
  • “Normal” is having some of the major reference ranges for laboratory tests completely memorized from reviewing medical records so many times.
  • “Normal” is hurting by doing exercise, but needing exercise to help your other conditions.
  • But most importantly, “Normal” is remembering that only you have a Ph.D. on your body! After all, you are the one that must live in it.

“Normal” is a fluid term. It changes day by day, hour by hour, year by year, decade by decade. It may change a little faster for some people with chronic illnesses, but the definition of “normal” changes for everyone. So many people chase after society’s definition of normal, but that quest will always be futile, until you realize that the only definition of “normal” that matter is yours. After all, that’s the word only you can define.

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