Making Lemonade From Lemons

Can we all be real for a moment? Life can be hard. Life can be "unfair“. AND life can be fun, adventurous, fulfilling, and simply grand.

In the past year, you have seen and heard of all my adventures in my wheels and you have learned about my perspective of my wheels giving me freedom not making me bound to anything. So after these times together you can see how I could be a miserable mess today as my everyday wheelchair has been broken beyond immediate repair.

I found my current chair, Elevation by PDG from Canada, using YouTube about 6 years ago. I had spent decades asking my OT why wheelchairs always had to have allen wrench adjustability when office chairs can be made ergonomic in the push or pull of an easy lever. The Elevation has a back portion to recline to varying degrees as well as the seat portion to go to partial standing angles as well as dump mode, which puts your knees above your hips so you can push easier and get spine load relief. This functionality has been a game changer for me as my disease marches on and my body enters middle age which adds all the natural changes our bodies go through.

So on Friday, when I got the call that my frame literally sheared in half after being fully repaired, my heart sank. I had such hope for my wheels and thus my body to be back in good repair but that was literally shattered. Thankfully I have family and friends who kept my backup wheelchair in good repair riding in the back of my van for months- just in case the chair finally broke for real. The realization slowly hit that I would be stuck in a chair from about 15 years ago, that my independence to drive alone was gone as I needed help tying down this old frame, and that the way I live life each moment had really changed just due to sitting on old wheels.

Life teaches us how to handle new circumstances. After 34 years of living with Juvenile Idiopathic Arthritis and 33 of those years as a wheelchair user, I have had ample opportunities to make lemonade from lemons. Sometimes it is easier to be a juice maker than others and many times in this journey these current circumstances would have thrown me into the pits of despair. After the initial shock and reactions to the reality of these repairs taking months, I started adapting my expectations and priorities of my future calendar and reaching out to family and friends who may need to help in different ways.

There is never a dull moment in life. We can choose how we react to life’s circumstances. We can laugh, cry, or get moving. One thing is for certain- these life changes make us reflect and choose what is most important and who is wanted and needed for the journey ahead.

I have been trying to come up with an analogy for my non-wheeled readers but there really isn’t a crossover that can fully embrace this experience so here is my attempt. Sitting here in this 20 year old chair in a 5 year old past its lifetime cushion would be like having a bruised tailbone sitting on a hard bleacher seat with no back support 24/7 with your only relief being when you can be in bed or some other seated space. And as you sit prioritizing work and living needs you can feel all the other parts of your body tense up accommodating all the positioning and pain your body has just from simply not having a supportive seating option.

(Author’s call to action- Every insured wheelchair user experiences this as our cushions and wheelchairs have a 2-4 year life span. Medicare determines all insurance companies criteria which states people can get new cushions and chairs every five years. Do you get new shoes every 5 years that you use 24/7, 365? We desperately need change to these painfilled, life altering policies.)