Today, as I sat on my couch with my laptop on my knees and my cursor above the submit button, I was filled with a mix of emotions. Applying for a permanent handicapped parking permit was a difficult pill to swallow. Here’s why.
A while back, I applied for a three-year handicap parking permit. At the time, I could barely walk, so going anywhere was almost impossible, and definitely not fun. I was forced to get one so I could get from the car to the doctor’s office. About a year ago, I let my permit lapse, which, in hindsight, wasn’t the best idea.
NOW
This afternoon, I found myself questioning whether I truly deserved this permit. It was easy to minimize the impact of my condition when I compared myself to those who were visibly struggling with wheelchairs or missing limbs.
Thanks to some awesome doctors and the miracle of medications, my body is in a better place these days. I can often walk “normally” for short distances, which is to say I can hide the challenges of lifting my leg, pushing my knee forward, planting my foot, balancing, and repeating with the other leg. Most of the time, strangers would never know I’m sick. On the good days ( the only time I go out), I can stride through the drugstore like I own the place, and for all the money I spend there, you’d think I do.
So, applying for a permanent permit now feels disingenuous, even though it isn’t. If I choose my battles and go places when I’m strong, a parking permit isn’t always necessary. I can push to make it happen. The problem is that everything I do comes at a cost. Every extra step I take digs me farther into an energy deficit that takes away from the important stuff.
Bank visit? Physical crash for the afternoon.
Chiropractor visit? Unwanted three-hour nap.
Lunch with friends? One day of recovery.
Kids’ sports event? In pain for two days.
Getting the permanent permit feels like “the easy way out” even if I know it’s the responsible thing to do. Every step I can conserve on my way in and out of a building is one I can spend on some other important activity. If I save thirty steps in and thirty steps out at the UPS Store, that means I have more energy for conversation at the dinner table or keeping my eyes open for family movie night.
ADMITTING DEFEAT
Applying for a permanent permit feels like I gave up hope. It’s a visible marker of my limitations. It’s as though I am putting a label on myself, one that screams to the world, "I'm weak." The lifelong permit says I’m not resilient enough to push through the suck. It’s an outward admission that I’ve accepted my condition as part of me that is here to stay.
GUILT
I worry that taking a spot may take away a spot from someone else in a more severe situation. I wonder if I’m being selfish. I could continue to bear the burden silently to avoid inconveniencing others. It’s a challenging dilemma, one that tugs at my moral compass.
PROCRASTINATION
I actually filled out the application months ago. I left it with my doctor and said I’d pick it up in a few days. Did I? Nope. It sat there signed by the doctor for ninety-seven days while I limped in and out of stores, schools, and hospitals without the benefit of one. Every day I made do without one felt like a demonstration that I didn’t need it. That is…until I couldn’t.
If you barely make it to the car and can't drive to pick up your kid from school, that’s a problem. Needing strangers to help you back to the bench so you can wait for an Uber to take you home isn't what anyone needs.
JUST IN CASE
The permit is more than a way to ease the burdens of existing. It’s an insurance policy. While I can usually make it into the restaurant to pick up breakfast burritos on Sunday morning, I’m never sure I can make it out without sitting on the ground halfway back to the car. In case you’re wondering, it wasn’t the highlight of my day to have a woman thirty years my senior stand over me stopping traffic in the parking lot.
Even though incidents like this don’t happen all the time, the ones that do make me not want to go anywhere. I want to hermit because I don’t know if I can retreat from a store to the comfort of my car where I can rest and regroup in private. Having a spot next to the exit means I can abandon my cart and find a place to recover. The permit will help me get over the mental hurtle of getting out.
RELIEF
Hitting submit lightened my load. Soon, I’ll get the placard in the mail. It won’t fix my problems, but it will make them easier to cope with, thirty steps at a time.
ABOUT MY DISEASE
In simple terms, my immune system attacks my nerve cells. In addition to pain, those dying nerve cells throw chaotic signals throughout my nervous system, sending the part that deals with automatic body function out of balance. Here are a few of the symptoms that randomly change by the minute, hour, or day.
Dysautonomia - Unbalanced autonomic nervous system.
Heart Rate
Body Temperature
Breathing
Digestion
Brain Fog
Fatigue
Pulse Ox
Light Sensitivity
Sweating
Liver Function
Hormone Production
Heavy Legs
Neuropathy - Dying nerve cells:
Nerve Pain
Itching
Ringing Ears
Shaking
Muscle spasms
Motor skills
If you’re interested in finding out more about Neuropathy and Dysautonomia, check out this video by Dr. Amanda Peltier for Dysautonomia International.