For the last year, I have been using a wheelchair that looks and feels like the engineering work of Dr. Frankenstein. The power wheelchair I had for the last six years or more gave out over a year ago after repeated damage by various airlines in my travels (that’s a whole other blog), so my mother took an old hospital chair and mixed parts together until it was something useful. It was only supposed to be a temporary fix but with the slow pace of Medicaid, it has taken a long time to get anywhere with acquiring the equipment that I need. Today, however, I feel like a huge weight has been lifted from my shoulders. The shiny new wheelchair pictured in this blog will soon be mine with a lot of custom parts built to fit my body.
I have had a bizarre feeling the last week or so that something was wrong with my appointment at the Shepherd Center. It’s a place in Atlanta where people with severe disabilities and spinal cord injuries go for treatment and getting new wheelchairs and other equipment. A lot of military veterans are treated there for their combat wounds as well. It’s a wonderful place full of (mostly) helpful, smiling, positive staff. No facility is without faults, though. The scheduling department screwed up my appointment by switching my notification letter with another patient, so I showed up today for someone else’s appointment. The envelope was addressed to me but the name on the appointment sheet was someone else. When we realized what was going on, the receptionist went to her supervisor because I wasn’t even showing up in the system. Eventually the supervisor concluded that there was a huge mistake and that my wheelchair appointment was actually two days ago but nobody told me a thing. They knew they were at fault, so they sent me up to the wheelchair clinic anyway even though I didn’t technically have an appointment.
My specialist was amazing. He gave me enough attention and respect even though there was an appointment screw up and he treated me with the kind of dignity that I rarely get in the system. We went over my various needs, what type of pain I suffer, and what options might suit me the best. The Shepherd Center really advocates independence and mobility, so if there is any possibility for a patient to use a wheelchair of their own power, they do everything they can to make it happen. I have limited use of my right hand, so they decided that I should be in charge of my own mobility as long as I can.
We talked about the limitations of Medicaid and the rehab equipment industry a lot. I don’t have a wheelchair accessible van because I can’t afford it, which means 90% of power wheelchairs are not going to work for me because they weigh 200-300 pounds. Nobody can lift that or fold it up. The options for power wheelchairs that break apart and fold up into four-door sedans boil down to only a small handful of choices. The reason is Medicaid and the industry in general falsely believes that disabled people don’t go out and live normal lives. We are mistaken as people who are confined to the home and never have social lives or experiences out of the home besides our numerous doctor appointments. Therefore, technology and mobility equipment have never catered to the idea of accessibility outside of the house. The industry in general just doesn’t offer power wheelchairs designed for people with active lives like I do and so many of us do. Active, social quadriplegics are a myth, apparently.
I was hoping to find portable power wheelchairs advanced in technology since the last time I got one about six to eight years ago, but sadly, nothing has advanced in that field. In fact, Quickie (the brand I have used for years) completely discontinued their portable power wheelchairs. That means my old wheelchair is an extinct species. This time we went with the Invacare brand, which is a brand I have never used. The picture at the top of this blog is the model we ordered but we changed some things to fit my difficult body. We ordered footrests that are very close together and at a 90 degree angle, rather than the ones in the picture that stick out. There will be a butt cushion and a back cushion that will prevent me from getting pressure sores and ease the bones that cause me pain. I was measured, stretched, poked, prodded and examined for more than two hours before we made any real decisions. Invacare is really my only choice unless I went with a wheelchair that I can’t move myself. Losing what little independence I have would be very disheartening.
To take it apart, you pull out the batteries, pull out the butt cushion, the back cushion, take off the footrests and then pull up on the seat so the frame folds up. When it’s folded, it’s only thirteen inches wide. It sounds like a pain in the rear but that’s my life. It’s always been this way. Going out anywhere is a chore but I have to grin and bear it to go anywhere. Just get on with life and don’t look back or dwell on what you can’t do or what you don’t have! So many people at the Shepherd Center can’t feel their bodies, can’t breathe on their own, can’t pee without tubes, etc., and seeing their suffering up close reminded me of how lucky I am. I may be a quadriplegic for life but I can feel my body. I can breathe. I can move. Life is not as hard as we make it out to be every day. These patients still smile and still find joy in terrible situations. I wish everybody could visit these people with spinal cord injuries and other severe disabilities.
It will be a month or more before I get my new wheelchair. His name is Marcel, by the way. I always name my wheelchairs because they are such an extension of my body. They almost develop personalities and I would be lost without them. Marcel, my love, you will come home soon!