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. 

First Vacation With a Wheelchair

I recently took my first vacation as a wheelchair user. I brought my travel chair Ariel with us and she performed beautifully. We flew United from San Francisco to Oahu with my company. It was a big “thank you” business trip for all their employees. They knew in advance I’d be bringing a wheelchair. United was able to check my chair right at the entry to the plane after the big “gangplank” walk to get to it. There are 2 tags they required containing information on the chair. I also made my own tag after doing some internet research on it.

My personal tag contained:

• A picture of me.
• A simple statement of “Thank you for taking good care of my wheelchair!”
• “In Case of Emergency” (ICE) information to reach us.
• Information about my chair like weight, battery type, make and model, color.

 

I got the idea online from a mom who made a tag like this for her son’s wheelchair when they’d travel. She said the rough handling of her son’s chair and the damage hugely decreased after putting the tag on. BRILLIANT!

All the United staff were super impressed that I planned ahead and had the chair info all ready like that. I did forget to take a picture of it before my husband put it in the travel case and handed it off to baggage. I read you should do that in case it’s damaged.

I will say I’m lucky that I can walk down the isles ok because “pre-boarding” really wasn’t super useful. There were a LOT of people in my way, mostly people traveling with kids who seemed to think they had the exact same pre-board rights as people with disabilities. (They don’t by the way. It’s supposed to go 1-disabilities 2-people with small children 3-first class 4-everyone else.) The airline was in such a rush to keep on-time that it was a bit of a mad dash. Coming home was better, so I’m thinking it could be a San Francisco airport thing?

The TSA check in San Francisco was also strange. I had no idea what to do as a wheelchair user now. I expected there to be some kind of “disabilities” check line, but there wasn’t. I had to maneuver through the general long line. Once it was my turn they pulled me over to the side and gave me a cane to lean on while conducting a thorough pat down on me. The female TSA agent was super sweet and always told me where she was going to touch me before she did. I appreciated that. Then she checked my chair and swabbed it down (they do this with all electronic equipment.) It took about 5 minutes. She told me since I’m able to walk short distances and stand for a bit that next time I could let the TSA agent know that and I wouldn’t need a pat down.

Coming home I didn’t have to go through the general TSA line. Instead they had a separate line for people with disabilities, just like I expected back home! I felt more relaxed and appreciated the straight, slow moving line to navigate through. I let the agent know I can stand through the scanner when it got to be my turn. I turned off my chair and unlocked my breaks so she could push it to the other side for me while I went through the scanner. This was MUCH easier for me and I only had to walk maybe 5 steps? Then I sat in my chair while she completed the chair check. This was a simpler, more relaxing experience. Again, everyone was very nice.

I’m not sure what people do who can’t get up out of their chair at all. I’m guessing maybe get a pat down while sitting? But that sounds very uncomfortable and hard to go through.

The flight was… a flight. Nothing gluten free so good thing I brought my own food and water. Always get your own water once you’re through TSA security! You can just bring a travel cup and refill it at a drinking fountain for free. 

When we arrived I had to use an airport chair and porter as my wheelchair was down in luggage claim, even though they said it would be at the gate. Weird. Coming home it was right as we got off the plane like we had expected the first time.

During our 5 day vacation I learned that big cities and towns will be much more wheelchair accessible than smaller, quaint areas. Makes sense, but as a previously bipedal mover I had never thought about it much. I also like smaller towns better than big cities. I felt frustrated a few times when places we wanted to stop at were obviously not accessible. But I also learned that some places have portable ramps if you just ask.

The larger tourist stops were fully accessible and welcoming. When we went to a popular snorkel destination they knew how to get my chair onto the shuttle and clamp it down. I rode for free and my husband paid and small fee. They also had free beach wheelchairs that I personally think are a nightmare if you’re over 100lbs. My poor husband tried his best but finally I just got out and pushed it like a beach walker (which was useful.)

Before we left for our vacation my husband bought me a pair of super tech collapsible hiking poles that weigh nothing, complete with “beach heads” for navigating sand. They were perfect for helping me walk short distances and broke down to fit in a purse or backpack.

(My amazing beach poles!)

The Luau we went to also knew in advance that I use a chair. They had a gas powered golf cart and drove me wherever the rest of the group was going.

(Ready for adventure!)

I think planning your trip around making sure you’re going to a place with friendly people who are happy to accommodate you is very important. Hawaii was perfect in that regard. Every single person was so friendly and beautiful. 

Many times through the trip I thought “how do people traveling alone in a chair do this!?” It seemed impossible to me. Or even people with zero mobility. That would have been an incredible challenge.

Throughout our trip I got compliments on my chair. Even the shuttle driver who picked us up in the morning said “Why did the instructions say there was a wheelchair?” Not knowing he had just put it in the trunk. Hahah!

The hardest part was when there was a lack of accommodation. Like the elevators at our hotel were much too small. They’d pack in with people all sticking their butts in my face or knocking me with beach bags. It was too small to turn around in, so I had to exit backwards every time. I hated it. Twice the lock on the back of my chair popped open and I was painfully jolted as my husband was trying to helpfully maneuver me through a tight spot. It hurt and I snipped when I shouldn’t have. I know it was a whole, new, unknown, stressful experience for him. We’ll both get better at it the more we do it.

All in all we had a wonderful time. Snorkeling was by far my favorite part. I really am part mermaid!