A week ago I received my next milestone wheelchair.
My last manual chair was a manual frame (ti-lite) with semi-powered wheels (e-motion). After my best efforts to keep walking as long as I could, I finally stopped standing and walking six to seven years ago and went into my first wheelchair - a significant milestone in my progressive disorder. My rare muscle wasting disorder is progressive so it's imperative for patients to maintain and push themselves to continue moving, while at the same time balancing safety and self preservation. If I break a limb then it's detrimental to my disorder, igniting further immobility and causing the condition to progress faster due to impairment.
Going into my first wheelchair was difficult. Receiving my new milestone chair a week ago was no exception.
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Rather than going into a powered wheelchair six/seven years ago, my strategy was to get fitted for a manual chair and slap on semi-powered wheels I had learned about. My arms, hands and fingers were too weak to push a manual chair but strong enough where I didn't need to jump into a powered chair quite yet. The wheels were sensor activated so one small push would stimulate it to propel it with you. With the semi-powered wheels I could still wheel and thus exercise and preserve my arms a little longer than if I had retreated to a full powered chair with a joystick. I believe this strategy helped me, but a year and a half ago I started the process for my next milestone chair because I had become too weak to push even semi-powered wheels.
Unfortunately, the process took 1.5 years - way too long especially for someone disabled who relies on wheels to get around. My husband had to push me around and I noticed I was less independent and active. I didn't go out as much by myself out of fear of getting stuck or even more trite reasons, rolling myself into my condo and up a 1.5" incline ramp to my door. One afternoon I was out by myself and when I got home it took me over an hour to push myself up my tiny ramp. I was sweating, I was crying, I was incredibly frustrated. I couldn't believe I didn't have enough strength to push myself up this tiny ramp, but that is the way this disorder deals - sometimes weekly I can feel too weak to do the simplest task I could do a month ago. I eventually got up the ramp but only because my neighbor came home and they pushed me up.
"I need my new wheelchair, what is taking them so long?" I wondered..
Getting my first wheelchair was difficult, long and expensive, much like this new chair. Except this chair took one and a half years to obtain; a customized wheelchair frame that takes less than 2 weeks to build. SO why does it take so long? Good question.
Being disabled is only part of the difficulty of every day life. The other mind-numbing challenge is taking on a world that isn't built for you and a society that doesn't understand and profits from your incapacity.
Unfortunately, every medical supply I've ever done business with, when it comes to chairs, are incredibly unresponsive. It's a nightmare. It's terrible when I have to "run" after businesses and beg for progress on my order. The same goes for post purchase care. I've rarely had good experiences with wheelchair representatives. They give you their pitch of how much they care about patients over the sale but this is simply not true, or at least in my experience. As soon as I agree to buy their frame they seem to disappear, and when my chair breaks down or I have issues it can be like pulling teeth to get repairs. I sound like I'm nagging as I BEG for help and I'm often dismayed at how people in the business of disability don't seem to understand the urgency when wheelchairs break down.
Same goes with accessibility. Past apartments with stairs to the building didn't seem to understand why it was a big deal when the only wheelchair lift in the building was broken for months - leaving me a prisoner in my own apartment. I enter challenges like this every day and sometimes every minute and my days can generally feel like climbing Mt Everest. Imagine your legs are cut off RIGHT NOW. That is what it's like when I don't have my wheels but worse because my upper body is also weak so I can’t drag myself around. I'm at the mercy of my wheels and begrudgingly dependent on others for the most basic things.
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The other issue was health insurance. I had privatized health insurance (blue shield) under Jason's job. Even with great insurance under a group plan, I'm usually on the phone arguing with insurance almost weekly because their job is mostly to cover as little as possible. I mean, private insurance used to be able to deny people with pre-existing conditions, which is what my disorder GNE Myopathy is categorized as, until Affordable Care Act was implemented. Still, even with ACA if I didn't have my husband I would be subject to ungodly fees as ACA prices continue to rise which most disabled cannot afford. While some of the provisions enacted under ACA has significantly helped those with disability, cancer, and illness, who can no longer be denied coverage by private health insurance due to their disability or illness, including 17 million children (remember half of rare genetic diseases affect children), ACA still has major issues and at the end of the day was, yet again, mostly a gift to private insurance and Big Pharma.
After battling insurance they denied most of the chair and we had to pay $8,000 out of pocket because they didn't consider it "a necessity", yet I'm immobile, barely able to push myself outside. By the time we realized they wouldn’t cover most of it, it was too late to restart the process. I was in desperate need for new wheels and had to pay out of pocket. I have many health insurance stories and commentary on the overall corruption that is our healthcare system but I'll save it for another time. All I can say is going through an extreme disability, genetic disorder and/or illness AND dealing with health insurance mostly brings me to tears.
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I ended up getting a manual wheelchair frame and power add-on (e-fix: joystick and battery) which propels a manual chair like a powered chair but smaller, easy to break down and portable. I could have went straight into a powered wheelchair but my entire future is a big powered chair and I'm keeping it at bay for as long as possible. Unfortunately, insurance wanted me to go into a powered chair. The issue with choosing a huge powered chair is we would have had to buy a new vehicle and not just any vehicle but a van that can handle a powered chair. We currently have a little hatchback car.. We don't get the latest and greatest cars, tech or fashion and often keep our products until they die so we weren't in the market nor could afford a 40-60+k accessible van right now. The other issue is our condo is small therefore the doorways are smaller than average. Our place is also too small to widen the doorways. My new chair BARELY squeezes through my doorways, leaving only a sheet of paper of space on both sides, so if I would have got a powered chair we would have had to move, which we also can't afford right now.
After waiting one and a half years for this chair I was elated to receive it. Finally, Jason doesn't have to push me. The past 1.5 years I noticed I was a little less social. While I went on road trips we didn't tour around the city or crowds as much as usual because being pushed isn't the most fun. I'm already quite dependent as it is so not being able to push myself around garners more stares than usual and makes me feel invalid and less than...moreso than usual.
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Soon after receiving my new wheelchair I was noticeably melancholy.
"Another milestone", I thought. "Why must this disorder continue inching until it has everything?"
It was mixed emotions. On one hand I was nothing but grateful, on the other hand the future keeps bearing in closer. I quickly picked myself up and remembered to relish in increased mobility. This is good news. While it's difficult to approach another milestone, receiving this chair has been the highlight of an extremely difficult 2018 and past one and a half years, really.
One and a half years ago my mother died, a couple really important familial figures from my childhood died and my father was told at the beginning of this year that he had a year to live if he didn't get a transplant and has been in Detroit UCI since.
I alluded to a number of mysterious chronic issues that have sprung up the past couple years and the difficult diagnosis journey with specialists and prescription pills that imprisoned me in What Is in a Year: What is Chronic? - Part 1. I'm still working on Part 2-4 to the blog post to further explain as well as what I'm doing to take charge of these issues. I hope to post Part 2 with a drawing this week.
Unable to receive answers or care from western medicine I've since taken charge of my own health and have been seeing improvements every week with the exception of lapses here and there. I shared on my personal Facebook page last week that the same week we had to pay $8,000 for my new chair I got the mumps, Jason was laid off and our car broke down - requiring expensive repairs.
2018 has been difficult, one of the most difficult in the 18 years I've had GNE Myopathy.
I'm not sure what else can happen this year, but I decided to do my best to laugh in the face of adversity because what else can I do? It’s life and life, and worse, happens for most of the world. I’m viewing the newest obstacles such as job loss as windows of opportunity.
This weekend we had a number of engagements. After getting over the mumps and mostly looking and feeling like hell, I decided to do something with my hair and face. I think it's been 8 months of not putting on makeup or doing my hair. I rarely wear makeup anyways and doing my hair consists of wash and go, but when you're sick and experiencing chronic pain, chronic fatigue, nerve pain and chronic itching, what you look like is the last thing on your mind, at least for me. But after the year I've had and conquering the mumps I thought looking better might actually make me feel better and it did. I spent the weekend taking my new chair to see the California sightsand getting reacquainted with LA in a powered chair, and a bonfire hangout with friends.
I've been practicing with my new chair and it's funny, for every mobility issue solved, new ones arise. Bumps and crosswalks are my new nemesis as I navigate a powered system while remaining sensitive to my weakened core and inability to catch myself if I fall forward.
My chair is much taller so eating at restaurant tables, or any table, is unlikely unless the table is tall. Since I can't lift my arms to eat anymore, I have to prop my elbows onto tables that are much higher than my lap so I can feed myself using the table as leverage. This is the strategy for most things that require using arms like putting on makeup. There are many little, yet not-so-little examples like this. With every change in a progressive condition there are endless obstacles to face.
Still, I've already been able to see areas of California I wasn't able to with my semi-powered manual chair. It's nice not being limited to inclines and declines due to lack of arm strength.
On Sunday I took a stROLL down a windy PCH coastline. The bike path and beach were filled with either bikes, owners with their dogs running along the beach line or bikes filled with dogs. As I rolled along to my Bob Marley playlist with the sun beating down on me, people passing smiled, high-fived me and shouted "Nice hair!". I was indeed "feeling alright".
With another milestone it's a new chair and a new outlook. Despite the constant setbacks I’m doing my best to continue pressing forward and working on getting better. I’m looking forward to seeing how the rest of 2018 shapes up.
My art gallery
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