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Ready to Roll? Maybe, Maybe not?




Since it's been a minute, let me bring you up to speed on the process of getting a new wheelchair as an ambulatory wheelchair user. Last time I wrote, I had just found out that my contact at the medical supply company had not let my PT know that the letter she had submitted over a month ago needed a signature before he could send it to the insurance company. This delayed the process another month. While waiting for them to order the new chair, I had to pay out of pocket to have my old chair repaired.


Now that you're caught up, let's dive into the process of becoming an ambulatory wheelchair user.


The fantastic news is that, as you can see from the photo above, I received the new wheelchair! While the medical supply company was telling me that the chair had been ordered, the insurance company kept calling me to tell me that the claim hadn't been filed properly. Despite many calls, all I could do cross my fingers and hope that I really was going to get the new chair.


On October 17th, I got a text from the person who does all of the repairs that he had my new chair assembled and ready to deliver. I could finally exhale!


When he delivered the chair, he still needed to attach the dial that controls speed because he needed to know where I wanted it. Since it was his first time installing this set up, by the time he finished it was time for me to leave for an appointment.


This meant that I had a new wheelchair with power assist technology (kind of like an e-bike) and zero lessons on how to use it.


Let's just say that I crashed into the table, the dog crates, hurt myself and my mom. I tried taking the chair outside for a spin, only to learn that the speed control doesn't help on hills--the chair takes off and gravity takes over. I skinned my hands, scratched the chair with my rings.


I tested it out in a parking lot, and ended up with pain that kept me awake at night from the amount of strength it took to manage on uneven surfaces.


I carefully planned an outing to a place that I thought would be accessible, and not one thing worked out with the chair. I came home emotionally and physically exhausted.


I went to Target in the evening and couldn't figure out how to do things.


I went to a memorial service and plowed into my cousin's boyfriend.


Yeah, it's funny in many ways, but more so it's frustrating and demoralizing.


Is any of this the end of the world? No. But it is exhausting and, honestly shocking, that I was given this type of medical device that takes skill to operate and given no help or instructions.


When I called the medical supply company, I asked if someone could help me to learn how to use the device or if they would recommend an OT.


I was told: "I would look on YouTube."


No, I am not kidding.


I asked her to please reach out to the wheelchair company rep or the person who had helped pick the chair for me. She said she would. I did not hear back.


I emailed my PCP, who enthusiastically supported the idea of OT, but didn't know where I could find someone to help me. Many phone calls later lead me to discover there wasn't really anyone in town to help specifically with wheelchair use other than a PT who would be out of pocket.


Fortunately, I was able to pay him for a session, which was literally life-changing. I learned how to go outside, up and down hills safely wearing wheelchair gloves; how to adjust the dial for inside and outside use; how to know if my positioning in the chair was okay; have the breaks adjusted so that they are actually secure now; how to turn in a circle; how to navigate a store; how do navigate an elevator; how to navigate an uneven sidewalk; how to get through a door without an accessible button to open it.


Note: I have never known how to navigate a door on my own and every time my mom struggled to get me in and out of doors without accessibly features, I wondered how in the world someone in wheelchair did it. I learned the reason is because it is virtually impossible other than to swing the door open, try to push your chair fast enough to catch it, let it hit you, push it again, power a bit, let it hit you. Repeat. For a door opening towards you? You're pretty much out of luck. As the PT said, you're really at the mercy of hoping someone will help you.


Now, I do need to put all of these things into practice, and it will take a lot of practice to become proficient, but at least now I have the tools I need. All it took was one hour and twenty minutes of this PT's time. And, we're still not sure the dial is installed correctly.


I don't know if my experience is typical for people receiving wheelchairs for the first time. I don't know if all medical supply companies are as awful to work with as our local one is.


What I do know is that it is dangerous and irresponsible and demoralizing to be thrown into using a power assist wheelchair with no training.


In the past, I have always been pushed in a chair by my mom. The purpose of this new chair is to give me the freedom to use a chair on my own. There is no freedom to be found in having a chair that you cannot use safely. That you feel incompetent trying to operate. That you can't figure out how to use.


I couldn't even feel excited about the chair until the PT came to help me. He offered to come for free if I couldn't pay. When he left, I felt ready to use my new chair--safely and with greater knowledge as I navigate the often inaccessible world we live in.





It is a very big transition to say: I am going to use a wheelchair more frequently and on my own so that I can be a part of the world in ways that I have either avoided , pushed through in ways that made me sick, or attended but found myself sitting wherever I could find a spot--even if it was the floor. This transition is emotional enough. It shouldn't be combined with a lack of care and support from those providing the equipment. For those non-disabled people reading this post, these types of events happen in our lives daily. It's the cumulative effect of living in an ableist world that exhausts us.


It is my hope that, even in this inaccessible world, the wheelchair will offer me some new freedoms that I did not have before--especially after the generosity of two PTs who made it possible for me to 1. get the chair in the first place, and 2. learn how to use it. Thank you, Mieke and Mitch.


Blessings,


Emily


P.S. I hope you enjoy my RRR Brain Fog shirt: What do we want? Less Brain Fog! When do we want it? Want What?! One of Dr. Rowe's favorite jokes!



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