When Dealing With a Progressive Disease, Giving up What you Love Can Create Greater Opportunities

I loved my truck.

Fire red, tough, and super cool.

But it no longer made sense when I switched to a wheelchair full-time.

A mini van was not cool—especially a dull gray one that looks like a giant rat on wheels.

These are the decisions you have to face, however, when you’re negotiating a progressive disease.

Adjusting Expectations: Not Lower, Just Different

When I graduated college in 2005 I got a steady job at an Engineering Firm and I was making more money than I ever had before. So I made a purchase that I had been wanting to make for quite a few years. I started driving my dream vehicle, a Toyota Tacoma.

I loved it! It had more power, more cargo space, and more attitude than the ’91 Honda Accord that I drove in college.

It hauled lumber and waste when I owned my house in Sacramento and it even helped me move my entire life across the country when it was time.

I took care of it, and it took care of me. For 7 years and 108,000 miles I never had a problem with it.

However, when I started using a wheelchair but could still walk a bit, I had to squeeze my chair in behind the passenger’s seat in the cab and then stumble around the truck to the drivers side. This was a pain in the butt and became more difficult each day.

This was one of those times when the progression of FA reached out and slapped me in the face.

Dealing With Change is Tough

I do not notice my balance and coordination getting worse day to day but the fact is, until we have an effective treatment, FA will continue to cause damage to my body every day relentlessly even if we don’t notice it.

I am normally pretty darn good about taking things in stride and seeing the positive side of the situation but every once in a while there is no ignoring it.

Facing The Reality

I realized how much I loved my truck when I went to look at trading it in for a minivan.

I researched the vans with the features I wanted, decided which dealership I was going to visit, even located all the paperwork in case I decided to pull the trigger.

However when I got in my truck and started pulling out of the parking garage of my apartment complex on the way to Car Sense I was caught by surprise when I started getting emotional thinking about making the switch from this:

Image Credit: toyotanews.com

to this:

Image credit: hybridcars.com

OK, I’ll admit I am a little overdramatic. However it is the indication of FA progression that is so upsetting.

Remain Objective to Move Forward

During that time I was in the final stages of full-time use of a wheelchair. It was a tough one because of all the baggage that comes with it. I think the turning point for me was when I realized the wheelchair is not an obstacle to be avoided, it is a tool I use to keep me moving forward.

Though I was not happy to be forced into the decision, I have been driving a minivan for several years now and it is totally utilitarian. It may not be able to go tearing through the mud but it has room for my trike, chair, and everything I need. Don’t tell anyone, I kinda like it.

10 Comments on “When Dealing With a Progressive Disease, Giving up What you Love Can Create Greater Opportunities

  1. Kyle you give me hope.
    You give so many people hope.
    I struggle with reaching for my independence too.

    But differently, although progressively deteriorating dysautinomia is a challenge not many understand.

    I applaud you for your bravery.

  2. Every thing I’ve heard about you is so amazing. I wish we all had your willpower!!! Keep up the great work.

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