Aftermarket add-ons for your wheelchair – Safety and Style

A while back, I wrote about the horn Bill and his brother rigged up for his motorized wheelchair. If you missed it, read “Aftermarket add-ons for your wheelchair – The Horn”.  This post is my account of a few OTHER additions made to the chair…

 

 

We got the wheelchair in early March 2005. To break in the new wheels, Bill decided to take himself to the barber for a haircut. It was a perfect spring day and his favorite Supercuts salon was only about 2 ½ miles from the house. We knew he had enough power, so I checked his wallet on a string, fastened his seatbelt, reminded him about looking both ways at the intersections, kissed his head and sent him off. Little did I know my admonition would come in handy! About two and a half hours later he returned with a buzzcut and a “mad-on”. Dear Lord…he wasn’t gone that long, what could possibly have happened? Through his wild eyes and keyboard banging, I learned that drivers could not see him, they often honked at him, and a couple of times he felt really terrified. For the record, it’s not easy to scare a guy who made his living by running into burning buildings!

Over the years, I’ve learned that there are times when it’s best to just listen and not try to do or say anything. This was one of those times. Once his blood pressure was back into the range of normal, he announced that we were headed to a bicycle shop and Home Depot, in that order. I grabbed my shoes, my handbag and the car keys, and loaded us up into the van.

We got to our favorite bike shop and he sped right to exactly what he wanted – a bright orange flag, the kind that parents generally add to a tricycle or the bike of a small child. Next stop…Home Depot. That part of the trip did not go as smoothly! He was having a hard time explaining to me what he had in mind. Never mind that he had to use “talky” to try and translate! We started to draw a small crowd! Frustrated for both of us, I told him to stay put and went to find a hardware guy! The universe was truly watching out for me that day, because the first guy I found turned out to be an angel in an orange apron!

Within just a few minutes, he completely “got” what Bill was trying to accomplish. While he was looking at the chair, he noticed that Bill had strategically angled his walking stick between the chair seat and the handles. He asked if that was working and the answer was “only part of the time”. They had another quick round of discussions and our new friend set about making the necessary alterations. About 20 minutes or so later, not only was the flag attached to the chair, but so was a piece of PVC piping. Both the flag and the piping were mounted to the back of the chair with metal brackets. The walking stick fit neatly into the pipe and his baseball cap fit over the pipe, keeping both close at hand. The flag actually had a joint, allowing me to detach the top part of the flag so that he could get in and out of the van easily. When it was in place, the flag extended approximately 3 feet above his head. It was just enough to make him feel safer when he was out and about on his own. It was really quite ingenious!

A few weeks later, our good friend “Aunty Em” gave him a bouquet of bright yellow (his fave color!) silk daffodils. He loved them and immediately asked me to stick them into the PVC pipe to wedge the walking stick. Turns out, the rattling was making him a little crazy and this was a perfect, stylish solution! The daffodils were a small bit of sunshine wherever he went and never failed to draw a smile.

In addition to the normal wheelchair adjustments and equipment additions we made to accommodate ALS as it progressed there was one final bit of flair added. The chair we received came with 3 sets of removable fenders. So his best friend took the silver set and with the help of an artist friend who details fire engines, added some hand painted flames to the otherwise vanilla looking fenders. When all was said and done….it looked like he’d won a trip to the reality show “Pimp my Ride”!

The addition of the flag allowed Bill to feel more confident when he was out and about on his own – a true blessing which allowed him to keep his independence just a little bit longer. The flowers and the flames were the icebreakers that made the chair a little less threatening to strangers and children. For me….I just smiled and was thankful that ALS only got his body and not his spirit!

The New Road

Starting over without your life partner is not easy. In fact, I am inclined to agree with what many say about ALS. It SUCKS!

 

 

 

The reality is, while he is never any farther from me than my own heartbeat, my best friend and life partner Bill will never again share my bed, tease me about my terrible joke telling skills, “handle” the bugs and rodents that occasionally show up or even send up his distinctive “meow” because I’ve wandered away from him in the grocery store and he can’t find me. This, and oh so much more…I miss.

So…each and every day I have a choice. I can (attempt to) stay firmly rooted in the past, where it’s familiar, where I would like to be. Where Bill and I were – together. I can stay in bed, under the covers, and let the world go on its merry way. I don’t have to participate and you can’t make me. (sound like a petulant 3 year old you know?!) I did in fact, choose this option in the first days and weeks following Bill’s death. I can definitively tell you that it’s dark and not particularly interesting under the covers!

So the only real option for me seems to be – put on my big girl knickers and a brave face, pack a snack and hit the new road. I’ve learned and come to appreciate, that if I am nothing else…I am resilient. I am not wired to live in the past….I live in the here and now. Unfortunately, I’m told that I make grieving look easy, or worse, that I didn’t grieve at all?! For the record, I grieved along the way. Every day, some new bit of functionality was lost and Bill had to hand that off to me. Trust me, we both cried.

So the question is, how to keep the bravery going? Just as ALS has its own path with every patient, so the recovery path is different with every survivor. With Bill’s passing, I knew that fundamentally I was different. But when I looked in the mirror, I saw the “same” me. I would get tripped up and start the crying all over again. And we all know what that looks like! After a good cry, you can’t breathe, your eyes are red and swollen, your nose is runny and red from blowing, you have a raging headache and in general…look/feel like crap! Great!? How would I ever break the cycle?

For me, it was a change in haircolor. I will forever be grateful to my hairdresser, and good friend Alisa who mixed her magic and transformed me from blonde to the red I should have been born with. This one small change put me on the firm road to recovery. We did not get the red “right” the first time, but the change was transformative. Each time I looked in the mirror, I literally saw a new person. In time I began to think differently. I began to act differently and with each baby step, I got stronger and more confident in my new path. It’s not always easy, but each day it gets easier and I have never looked back. Thank you Alisa…you are a genius!

SPECIAL NOTE: DO NOT TRY THIS ON YOUR OWN! Seriously. If you choose to make a significant change with your haircolor, go to a trained, certified colorist. Get recommendations and spend the money to have it done right.