As I have mentioned in the past from time to time I would introduce you to guest bloggers well this is one of those times. It is an absolute pleasure to be an outlet for individuals who want the opportunity to tell their stories in their own words. I remember seeing Quinn Wade a few years ago on Jasper Ave and 104 St in Edmonton near the Sobey’s playing his saxophone; at that time he was in a wheelchair. Read Quinn’s story in his own words.
I was diagnosed with a brain Virus called Progressive Multifocal Leukoencephalopathy (PML) 25 years ago; it used to be extremely rare back then. These days it’s still quite rare; however a rise in incidents due to the use of a medication by people who have MS has encouraged further research into this virus. In a very small number of people who get it, the virus just arrests itself. In my case it did that. It usually leaves ongoing issues and disability. In me, it messed up the part of my brain that sends the signal to my legs to make the walking motion, kind of like a cell phone cord that only half works. I was not even moving for at least 6 months. I don’t remember a lot of that time, except that I was told there was nothing they could do. I would live, with whatever damage it left behind, or I would die. The likelihood was the latter. I did live, and I was on crutches for a year before I was in a wheelchair. I had a very good friend who has since passed on who was there when I first landed in the chair He told me point blank “you get a week to cry about it, a week to be mad and grieve. After that, you get no more. Anything you could do on feet, you can do in a chair, and you will.” Adapt or die. It became our motto a week later; he showed up on my doorstep, I was still grieving. Lol he picked me up plunked me in the car whether I wanted to be or not and off we went Lobster fishing of all things Blueberry picking and we did everything. I learned to swim using my arms, I dragged my chair upstairs, went on trains The whole nine yards And I climbed trees and went fishing and did everything everyone else did. I just did it differently. I couldn’t walk but I could play sax. There is a passion on everyone for something. Find a way to do that thing some sing, some paint, some write, some play music, some draw; whatever it is you just can’t not do. Do it. Whether your legs work or not, dance in life. I survived it for too long. One thing nearly departing taught me was that there is a difference between surviving and living. Years went by… I had people tell me I couldn’t do stuff and of course I did it anyway somehow. I feel like my friend looks on me now and I think he would be happy I learned from him about not seeing myself as a victim. The virus returned again a couple of years ago. That, in itself is almost unheard of. Again, it almost killed me. Again, I lived, and I started to heal, and nobody knows how or why. When I started feeling better, I went to visit some friends in California in Sept 2015. It was an environment, where I felt free to be me. My friends are some of the most supportive and non-judgemental people I have ever had the pleasure to know. It wasn’t a big deal to them if my legs worked or didn’t work, as long as I was a decent person and respectful. I’ll never forget it. I was on the pier at Huntington Beach and had my sax with me. I didn’t know if there were rules around where people could jam or not (people jam there a lot because it’s surf city), so I asked one of the security people there He looked at me and said “you aren’t from here are you?” Me: no Him: this is America son. You are free to play wherever you would like. That resonated in a lot of ways. I was free to be me. Nobody cared one bit about my legs not working, or tried to stop me from doing things because I might hurt myself. Everyone trusted that I knew my own body and my own limitations. I played, and my friend taught me to surf, and I swam and went to Hollywood and played in the famous Sound City Studios. I saw Muppet studios and the space shuttle too! And then it happened…. I was at Newport Beach and there was this rope structure thing So of course I had to climb it. My friend noticed my legs were moving but neither of us was sure if it was voluntary. She had faith at that point that I would walk again, and took pictures for me to take back home and see if anyone could figure out what was going on. My friend took that pic and said “I think your legs were moving a bit. Something has changed.” In the meantime, we continued to tour Southern California and sing (badly…I can’t sing) in the car, and I continued to feel better and better and gain more confidence in myself, regardless of what my abilities may or may not be. I won this dance contest in my wheelchair in January 2016 and the tickets were to a show at a local bar so I went. Prior to my trip, I hadn’t really had the confidence to dance at all. But that night I danced in my chair. The bar was not accessible so I dragged my chair down 16 steps to get in and I loved every minute of it At that moment, I accepted that I could dance, and well, in my chair. I could have cared less if anyone thought anything of it. A friend of mine and I tore up the dance floor that night, and then some other people joined in. For the first time in a long time, I felt a full part of society in my own city. So when I started dancing in my chair and having an actual life instead of just surviving…I got more confidence and it just kept going from there. And then there were the frustrating months where I just couldn’t get my legs to do what I wanted them to So when the snow went and May arrived, I wondered…hmmm could I ride a bike? A friend of mine took me up to the bike commuters and, against most people’s better judgement, I got a bike and my brain knew exactly what to do. They say you never forget how to ride a bike and I guess it’s true. Doing that accessed the part of my brain that also remembered learning to walk. My bike; that was the moment of freedom; at first I strapped crutches onto my bike because I was still very unsteady and it was still dicey if the signals to my legs would short out again. Then I moved from that to using a cane. I had this hilarious Charlie Chaplin waddle happening as I tried to relearn how to balance. May 2016 long weekend I was able to walk without walking aids. I started dancing with my cane to regain balance and a couple weeks later tossed the cane only for a bit. I knew my balance wasn’t back and wasn’t sure if I would get tired fast And at times I did and it did hurt No pain no gain. It takes a lot of work people don’t see to regain things that were lost. I know of one other person who also recovered from it, the same thing happened to him I think a number of things contributed to recovery, certainly for me. My mom used to call me a very determined child when I made up my mind about something I wanted to do, usually something I was told I couldn’t. I think we all have a fight for independence inside us, but we live in a world and a system that doesn’t like independence much. It’s easier to say “you can’t” than it is to say “you can” when it comes to ability. It also easy for people to start to believe they can’t do things, or that they don’t know their own bodies best, when we are constantly told by society that they know better that the person living in the body. A ton of healing had to do with music. There are studies out there that attest to music being a healing thing. Things that have changed in my life since walking: That first time I walked into a coffee shop I had been in every day for 14 years and it all looked different. I could reach things; I didn’t have to fight the chairs to get in line. And taking all the paths that I used to use in my chair still because I forget not to, so it’s always the loooong way around and bathrooms! Omg it’s more evident than ever now how screwy “accessible” ones are because I don’t use them now. But man what a pain when I had to and they were supposed to be accessible but met “code” but you couldn’t get in them of close the door. I get annoyed when I see someone who doesn’t need the accessible stall using it. I know how that felt having to wait with other stalls I couldn’t get into free while someone not using a mobility aid took up the only one I could use. I’ll always be annoyed by that. The same with elevators; it bothers me a lot when people who don’t need them crowd in; I feel like it’s taking advantage of their own ability to get on the escalator or take the stairs, and it makes it harder for people who do need it to get around. Taking the bus or the LRT is a whole other world, and I find myself shooing people out of the front accessible seats whether or not someone with a mobility aid is in them in case someone comes on and needs them. I remember when I couldn’t get on buses because people wouldn’t move. I stand on them now wherever possible.
mirella muses 