My mobility history

My electric wheelchair "Dory" just had her latest round of updates. She got a new battery, new battery cables, new smaller seat pan and a new cushion. During the update before that they installed the equipment needed to make her tilt on command, installed leg abductors (to help keep my knees together) and a taller headrest. As my needs change, so she changes with me. 

These changes got me thinking about my history of mobility aides and all that I've been through in just two short years. 

"Meg" was around $120

I remember the day that I knew I needed mobility help. I was with my family in IKEA and I just couldn't keep up with all the walking. Instead I went from chair to chair resting as much as I could. I felt horrible and I knew there was something seriously wrong with me. I was right! Not only did I have Metabolic Myopathy at the time, but I also had a brain tumor. 

I shared with my husband that I needed a walker with a seat and we bought "Meg" that weekend. I still use her, but mostly for watering my plants or brining things inside my house from my car on my own.

"Shirley" was around $100

I bought this wheelchair on my own for bigger outings like going to an art gallery or being out all day. I still remember it getting stuck in an antique store and my husband accidentally almost dumping me out of it. Hahah! "Shirley" sucked going over anything other than smooth cement.

She was light enough for me to push myself and almost use her light a second rollator. She also collapsed and fit in our car nicely. She wasn't comfortable to sit in for very long though and really was made to "transport" people inside their homes or a hospital.

I still have her, but I will happily give her to someone who needs a transport chair.

"Dory" was $16K (but insurance covered it)

Getting my insurance company to pay for my electric wheelchair wasn't easy. UNTIL I was diagnosed with a brain tumor, then it went pretty quick. I got my chair "Dory" one month after my brain surgery. You can see that by the time I got her I was happy to have a new tool of independence. I still remember the feeling of climbing in and taking right off. The feeling of freedom and independence!

"Arial" was $3k

"Ariel" is my travel wheelchair. At the time my company was planning a trip to Hawaii in January and I needed an electric wheelchair. I also thought my husband and I might be able to travel more in the future. She is an incredible chair for travel.

Ariel was essential for the years that we didn't have a wheelchair van. At just 55lbs both my husband and son could get it in and out of our regular car trunk. Now that we have our van "Pablo" I keep her at my Mom's house as a backup.

"Pablo" was $61K

And here is our biggest tool yet. Our wheelchair van "Pablo". Having him enables me to always use Dory. It also gives me independence where I don't need my son or husband with me all the time to get my chair in and out of the car for me. 

Dory is the only thing our insurance has covered. Being disabled is insanely expensive. I'm very grateful to have a good primary care doctor who fights for me and a husband with a good job who knows how important it is that I have the right tools. 

How Dory looks today.

Current modifications around another $30K

(covered by insurance)

Nature Cure

Where my husband and I live is packed with beautiful nature and accessible trails. The weather has been so beautiful that the other day we packed my wheelchair "Ariel" into the car and headed out to our favorite spot. It's a beautiful garden area nestled next to an Oak Tree forest full of every kind of oak you can imagine.

Being at the ocean and in the forest touching nature is completely detoxing for me. It brings me back to center and eases my mind like little else can. On our walk I even managed to hoist myself up a little bit so I could fully sit in my favorite leafy Oak. It was wonderful.

First Day Working in a Wheelchair

Despite having the Chief of Staff as my personal Neurologist from a world class health organization, my suspected Mitochondrial Myopathy remains un-daunted in her course of destruction. I've been trying different coenzymes and amino acids along with electrolyte water, but so far there's no difference.

Last Thursday I pushed my walking abilities a too far and feel like I never recovered from it. My legs feel much worse. Monday at work I "pushed through it" like stubborn people seem to do much too often. Tuesday I used "Meg" my wonderful rollator. But by Wednesday even she wasn't cutting it. The big problem in my office isn't really getting from A to B. It's all the chatting that seems to happen between or at those points. In my job that "chatting" is really important, but it's physical torture. Sure I can sit on Meg when someone starts to talk to me, but then I'm up again to finish what I was doing. Then all the sitting, pushing and getting up and down is just too much for my poor muscles.

Wednesday was hard for me. Wednesday night I came home and had a good cry. I was angry that my neurologist hasn't gotten back to me, angry that my medications aren't helping, angry that now my eye muscles seem to be straining and weakening, angry that I felt like I wouldn't be ok at work unless I used my chair. And frustrated. And upset. And sad. And...

(Smile girl!)

I told my husband that every single aspect of my life is now not only affected by my health struggles, but I have to think about it every second of every day. "Can I stand that long? Can I walk that far? Can I fit through there? Is it accessible?" From work to shopping to "fun" outings to sex there isn't one part of my life that isn't now touched by this. And it sucks. And I'm mad. 

I actually don't take comfort in knowing there are 650 million people in the world with disabilities. I wouldn't wish this on anyone. Our world is not made for us. For the "different." As anyone with Autism or who is a Little Person can tell you. We are a "one size fits all" culture and that size better also be 100% healthy and move on 2 legs. It's makes no sense. 

But now for some some positives. I'm very fortunate that where I work is super supportive and the office is about 95% accessible. Also the job I do I can do without any modifications at all from a wheelchair. No problem-o. My clients did look surprised and asked if I was "ok" but I'm pretty used to that from pushing Meg around. I also welcome questions and am very open. So Thursday Ariel came to work with me. And like every time I finally use my mobility devices, my life became worlds easier. I was in much less pain and my muscles thanked me for using my brain and my tools. 

My plan is to get Dory to my office (somehow) over the weekend and leave her there. She will then become my "work chair" and Ariel will be my home and "out and about" chair. It will work great if I can just get her there. I know Uber does have wheelchair service, but might not in my area. The public bus is my last resort simply because that will be super stressful and I've never done it in a chair before. 

I'm convinced life is nothing but a series of unpredictable events. You can make plans and think you know what's going on, but she likes surprises! I'm just trying to be mindful and focus on each day as it comes and what I need that day to enjoy it as much as I can.