We did it again. We traveled with my brother in his wheelchair. We went to Ontario for ten days and rented a wheelchair accessible van. We attended a Muscular Dystrophy family forum organized by Jesse’s Journey. The man who started it lost his son at my brother’s age from complications from the disease, so this was important for us to learn from the wisdom and experiences of others. Also I wanted Douglas to tell his story of his two month travels around Europe to families newly diagnosed who have no image of what the future looks like for their sons. Canada also hasn’t allowed medications that could slow the progression of the disease into Canada. Other countries are having success so I want to see why my brother’s only option right now is to slowly die loosing and grieving so many losses along the way. His ability to walk, his ability to move his hands, to hold his head, to eat solid food, to breath on his own… and as it continues we mourn each loss and we adapt and find a solution but soon there won’t be just fixes. It’ll be the end. I want to know what our options are and what the hold ups are. And I wanted to see if I should still have hope. Or do I let it go of that?
The flight was what it was. It’s not accessible. It can’t even pretend to be. The world has a long way to go on this. It is rocket science isn’t it? Why can you easily roll onto a skinny train and travel Europe in a wheelchair but not a plane? My brother owns a wheelchair accessible van, couldn’t an airline have one wheelchair accessible spot? There is a company Q’Straint that has tested and invented the technology. It’s a better solution than all the staff involved, delays, degradation, and the eagle lift that cost like 20,000$ to invent and doesn’t hold him in, and the risk of lawsuits when the chair breaks under the plane. Put your own chair under the plane airlines please! Also why because you are disabled do you have to pay first class fare, no other option? You have to pay because of your disability in life in so many other ways and honestly it’s been hard to pay for all of it, equipment, and the emotional toll. It’s not very inclusive. Only the wealthy people in wheelchairs will travel? IDK. But then again there is likely a table thingy in between the chairs preventing your helper from helping you. Ugh! There is no ONE accessibility plan that works for everyone, policies are not covering all the bases and protecting everyone, especially the people who need accessibilty. It needs to be looked at across the board. There needs to be someone in there who accesses on the spot, communicates with the people and adapts the accessibility then and there based on the need. Anyone at anytime could need this.
I feel it’s inhumane to ask someone to get out of their adapted wheelchair. Everyone please remove your limbs and try to get on and enjoy your flight?! It isn’t right. It isn’t safe and it removes any sense of safety and security, comfort, and independance from the person. Flying is hard enough for some people without their foamy pillow head thingy, let alone without their legs and their lungs, their back and head held up.
Anyhow…. the story…
It was what it was. I get too on top of tasks I know need to happen and might happen sometimes. So does Mom. We get overly productive when anxieties rise and go into full on focused mode. Which means we forget little details, which means we fumble, which means we make mistakes. And we get yourselves worked up and stressed out for nothing. Our high energies clash. I rush her, she rushes me with her tone of voice alone when we don’t intend to rush at all. I went into this with it in my head to remain calm. Just the airport, and the getting Douglas on the plane part alone. But ya I panicked a few times and tried to rush us along. I bit my tongue, I tried to breath and all in all we did it. But not without working up a sweat and a few snaps.
It was a record timing wheelchair break down. We were four hours early and just made our flight. We didn’t have assistance, not by choice, but it actually was ok. Less pressure. Less hands. Less room for error. I did stop halfway to our gate and ask they send help though, our hands were full of equipment and pushing Douglas and my arms were giving out, I was tired and my body hurt. My arthritis or fibromyalgia or whatever the pain is was on fire. The young man they sent tried so hard to help but was under trained, not self assured and dropped the electronics to the joystick and nervously picked it up quickly hoping we did not notice, but I noticed. He said nothing, I said nothing, I hoped for the best.
Moments later on the plane I had to retrace our steps back through the line of people trying to board the flight to find the handle for the joystick where he’d dropped the piece of equipment. People weren’t impressed with me. I had to look at least. I embrass easily, I blush, I get anxiety in crowds but the jeer from one man and the starring I blocked it out. It was gone, no where to be seen.
Mom tends to go into survival mode and not communicate the kind of help she needs. So I know to stand back and clear the area of hands that may get in the way while being ready to pounce and do what I’m told. Which isn’t always mind you. I can think my way is best and fight for that route. But there are times I know when to stand back or follow behind picking up the pieces. And sometimes her way IS best but maybe an approach that doesn’t give me a heart attack? In the moments you just go though.
So Mom ended up deadlifting Douglas eight rows up when the second row seat the agent on the phone promised was actually eight rows back. They counted after the bulk head? She explaining she’d have to lift her adult son, at 60, buuut no error really, the airline meant the second row after the bulk head. So it wasn’t their mistake. I really wish places dubbed accessible consulted a variety of people needing accessible public services to get a real life set up. But that’s a larger issue I may not be able to solve in my lifetime.
Mom’s mom strength must have kicked in. It was a feat. She deadlifted her 29 year old son up eight rows at 60 with arthritis, the side ways fingers kind. Which she never mentions unless it is to scare someone and say “ohh you broke my finger..” and holds it up to the horror of the person on the other end of the prank and laughs. I’ve never seen anything like it. She didn’t ask for help, she just went for it. This is not normal in any way, the staff acted like it was. It isn’t. It should have never happened. But we weren’t missing our flight or cancelling. We planned too much, and went through too much already to turn back and undo all our work.
We got him as comfortable as we could. I just went ahead and strapped him to the seat with a luggage belt around his chest and the looped it behind the tray table for the passenger behind and hoped no one would ask me to remove it. Last time we weren’t allowed to strap him in for “safety reasons”. So having him fall over himself, and mom leaned over a large divide to hold him up for five hours was safer? I wasn’t letting them not let me strap him in for HIS safety reasons this time and poor ol mudder’s back. We did a bit of moving him forward for circulation and back. And we only had one brief moment where he started to panic from the pain he was in in that chair. And I gave him something for it and took one myself and hoped for the best. There was a very cute dog under his chair the whole time napping on a leash. I hoped that energy would permeate to him and relax him too.
He was suffering by the end. Feet dangling and numb from blood rushing to his toes, upper thighs cut off digging into the bone. His butt bone was beat off him from mom having to take breaks at metal airplane armrests to get a better grip to continue carrying him. His body has no muscle now really, mostly bone and atrophied fatty tissue in place of that provides little cushioning. He did good though. We all did good. I tried not to hold the anger I felt that this had happened to us, to him. The lack of respect, the loss of dignity. Two ladies at the entry of the plane trying to assist moved his wheelchair back out of position after it was placed and almost foiled Mom’s landing with Douglas. This was very dangerous. She managed to get him landed on the edge and we pulled him by the belt loops which broke but we got him moved into the middle. We had said not to touch anything and to stand back and people mean well but after years of people meaning well and causing damage makes me a little less ok with it. I feel like I spent most of my life going, awww they meant well and dealing with the injuries sometimes and then how do you let go of that kind of anger? I try. I move it through with angry exercise or I just let er rip and cry the ugliest cries.
We had to wait about an hour and a half after everyone left the luggage area for the chair. Nervously, speculating, which we do. And not in a healthy way either, in a dark comical extreme way. Worst case scenarios type thing. The worst thing is we have been right on occasion. And then we laug hat how right we were.
It took us about two hours to get it back together after that. Someone had pulled some wires on the electrical. I was on my back on the Toronto airport floor jimmy rigging the thing, swearing, sweating, feeling my weight I’ve put on from stress eating and not taking care of myself. My chest in my way, my belly in my way, my inflammed feet and legs in my way but it worked out. We cheered! Yelled in the now empty and echoing baggage area in Toronto airport. echo echo!
I felt bad I snapped at mom, I felt she wasn’t being clear because the taxi line attendant kept asking the same question and mom answered with a hand gesture and a vague either or response. I think the lady was just trying to figure out what the second wheelchair looking thing we had was and if it needed its own wheelchair taxi which it likely would. It was like a skirt and a shirt or a dress scenario from my shop in Montreal. I could see it was a dress in the window on the mannequin, I knew it, I had put it there, I saw it, that was very very clear to me, it was a dress but day in day out people kept coming in asking for the skirt and shirt in the window. I think we assume people
see things as we see them regularly, it becomes very clear to us: but those new to seeing it can’t automatically assume what we need or what something is. I tell Douglas and Mom they need to explain more in depth and be clear on his needs. It’s not always clear to others no matter how clear it is to us. I felt bad. I can be snappy. I get this about myself. I get ryalled up. I spew political and global crisis that break my heart at people and expect them to feel my rage, I want them to feel it and share it but they often don’t and I’m like why don’t you care about my rights to my body and all other woman on earth for example. Why don’t you care about the health of the oceans???!!! Please care as much as me. But then again I’ll get overwhelmed by it, and try to forget about it because I feel helpless to be able to change anything. I’m up and I’m down. I care and then I can’t.
Hot dudes look at me. I’m don’t know what they’re thinking, maybe I don’t wanna know. But they look. That hasn’t happened in a while. I was pushing a commode wheelchair though without my brother in site, soooo maybe it wasn’t a good kinda look. Still it reminded me how I have turned off that part of me. The one that sweeps her hair and smiles at men. I try to be mostly neutral inside most of the time. I don’t have the time or energy for more complex emotions or to be so frivolous. I know I want love and a witness to my life one day but it seems like work I don’t have time for and half in half out is not my interest. And there’s a major man shortage in Newfoundland. I don’t get near as much action as a single lady my age in other cities and with the same level of attractiveness and jadedness. It’s true.
Anyhow, Airplane stuff not so much a time, putting a chair back together with electrical stuff ripped apart, ew. That heart drop when it doesn’t turn on. One wheelchair taxi only parked in the bay in Toronto. It took Mom and Douglas in his chair to the wrong hotel, then me, on the second trip with his commode wheelchair and then took us onward in two separate trips to the correct hotel. $64 later.
Then we got the wrong room, it was not accessible. It was what it was, not accessible. We waited in the resturant for a while for them to find us an accessible room. We spent the whole rest of the day resting and regrouping. I snuggled up with Douglas in his hotel bed listening to music we both enjoy. I don’t get to be close to my bro in regular life, he’s always covered with metal and so inaccessible for hugs. Mom went and did the dead man’s float (alive) in the pool to rest her body. I know a day will come when her body will give out and it’ll be my turn to step in and be the lifter. Her fingers are already sideways like crooked twigs. Mine are on their way too. But she can’t keep this up forever, can she? Then again I wonder if she will. They say mother’s grow the strength to lift their growing babies over time, and adapt to the new strength they need, maybe this is an extreme case of that?
Our first day out; it was full on Summer!!! The sun, the warmth, the leaves were on the trees, a great comparison to at home in Newfoundland. Our trees weren’t even sure of they could grow leaves and even in early July still wouldn’t even be sure of their leaves. The fresh sweet smell of bloomed flowers and the sound of birds chirping, a bee buzzing by, a foreign yet nostalgic and healing sound. It hit us. It started out relaxed enough, even a heated navigation to Queen Street from our airport hotel in the rental van after my cell phone closed and wasn’t showing directions and Mom not able to find it again and me driving in the many lanes. But Douglas did not like Toronto by days end…
I figured out how to drive us into downtown based on my minimal memories of living there in my twenties and following the CN Tower. We started at Queen West and used green pay parking lots the way along. We did Glory Hole Doughnuts, and popped in for a guitar sess next door quickly with the locals. Douglas used to play guitar and would have really been something with it, this loss he mourned the greatest. His hands. I saw my friend’s street she lives on and a cute restaurant Tennessee she took me too last time I was in town by accident. We went on the see her shop! BYOB cocktail Emporium. She didn’t even know but her bar supplies actually can be support aids for those with special needs. Douglas got a metal bent straw since plastics are being banned and of course he wants to save the planet but needs the bent straw to drink with. And he got a julep strainer straw to keep the grit out of his drinks, grit is hard to swallow for him. His swallowing reflexes aren’t great and he can’t cough if something gets in his throat. We wanted everything basically. We went up Ossington to bang bang ice cream and looked in a couple accessible vintage shops and to an outdoor market in Trinity Bellwood’s Park. Douglas had me put money in a musician’s case as we went by that he appreciated. We got back to our van and went on to graffity alley. We did some more shops. We went to a cannabis shop and asked about high cbd calming oils he could ingest. CDB has high anti inflammatory properties and antioxidants and helps with the pain and calms. The less the THC the less the psychoactive affects I don’t like. There were many more options than at home.
The mall was my mistake. We dropped mom off at “Come From Away”, the musical
Playing at Elgin theatre about Newfoundland help during 911, taking people from the diverted flights into their homes. I rememebr dropping blankets at Mile One Theater in St. John’s for people many many years and lifetimes ago. We went around the mall, which was a mistake. It was crowded with people laser focused on consumption. Douglas got overwhelmed and so did I. His hand was falling off the joystick, he was tired now and having trouble driving. We went to a restaurant after work happy hour office type bar and I plugged him in to charge his chair and his breather and we pretended to be people about town until mom came out of the theatre.
We met her on the street where we were sure we wouldn’t be able to loose her. Or her us. Driving back was dark and I was lost, more so than before. We all yelled. Douglas yelled he wanted to go home – a rare swear word came out of him. I yelled how do people live like this? Mom yelled at me yelling what’s my turn??? And in general. I’m not proud of my behaviour while driving on the 401, but I got us back to the hotel safely. I was so dishevelled I dropped my jean jacket and my hoodie and my scarf in three consecutive spots across the parking lot and didn’t notice until a half hour later up in the room, when I went out they’d been run over by cars but they were there. I know how those items of clothing left on the streets get there. I can’t judge it as a strange happening anymore because I’ve done it. I know why now. Mental exhaustion.
I drove us to London, Ontario. The van was excellent, perfect. An easier way of getting aorund than in Europe. The drive was nice, the nature. But I felt like I screamed, ROAD KILL alot. There were alot of dead animals along the highways which shook me every time. The scenery was nice though. Our hotel was easy enough to find, it was accessible. The town was quaint and peaceful and we got him to a barber shop, he loves keeping his fade fresh.
In the morning Mom went out early to get in the hot tub: I climbed in bed with Douglas in her place to monitor him.
I went for my turn in the hot tub and I walked straight in, and pushed right on the alarm button like that was the on button. A loud alarm was sounding so I hid in the sauna. It got awkward and no one was coming so I stood in front of the alarm button, tried to pull it or push it off and then left the entire area. No hot tub dip. I called the front desk and fessed up. But that was the extent of my effort for hot tubs even though it’d be good on my sore muscles. The hot tub was out of order the rest of our stay there anyways. I ruined it.
The Jesse’s Journey people were amazing. Everyone we met so supportive. The feeling like you aren’t alone because generally we feel all alone with this disease. As a care giver, as a family fighting this disease. As someone who wants to say something about my own suffering but keeps it in to not worry others, too much on our plates already. We had found our people. The conference was informative sessions with research scientists, doctors, advocacy groups and more speaking on recent findings for Duchene Muscular Dystrophy at the university in London. We met families, we met young boys affected in various stages of the disease. My brother the oldest.
I remembered my brother in stages of the disease through the boys. The puffy face from the steroids they use to slow the progression early on. My brother went off them when his teeth begam to crack, his moon face made him unrecognizable, his bones were brittle and broke easily, he felt out of sorts with it preventing puberty. He wanted off them. We realized he should have had psysiotherpy the past 20 years of his life. His feet and body may not have atrophied as much when we saw some other patients. But it was never something anyone offered him. I felt guilt. I felt we ruined his feet. And how did we let the doctors fuse his legs bent? He would’nt need them they’d said.
The cure is close. They have cured mice. They are able to cut out and remove the disease from genes and the dystrophin can be reactivated and muscle tone can increase if you have enough muscle left. The wasting can be stopped. The main problem is going into human trials, and getting approval, and red tape and beaurocracy. The cure is 10-15 estimated years away from public release. The US and the UK have drugs available publicly that slow the prograssion so boys can make it to the cure’s release. But Canada does not. This shamed me and made desperation spread through my heart. The cure is coming. Douglas said not to feel hopeful. He has accepted it won’t be available in time enough to save him.
I tired not to catch the hope. But what if? What if the government was on board? What if we could get them the listen to us, to see it is worth the risks, we want the cure, we will do anything. This suffering doesn’t have to happen. Jesse’s Journey is the biggest support of the science for the cure that I have seen. But the road blocks aren’t helping. I have to accept it will never reach him. I don’t want to accept that.
Douglas did a speech at the closing dinner. I cried and I caught eyes with the man and woman who started Jesse’s Journey and they cried. Their son died at Douglas’ age of the disease. The mother had had a trip of her own to France with her son that meant the world to them in his wheelchair. The father walked across Canada to start this foundation and hasn’t stopped fighting for everybody. I met a young mother and father my age of two sons in chairs with DMD. She is a carrier too like me. I’ve seen the geneticists and fertility doctor and having my own children isn’t going to come easily for me and I would never knowingly pass on the disease. My window is almost entirely shut. She told me of a group for female carriers, many of them misdiagnosed with fibromyalgia when it is the manifestation of the disease causing the symptoms. I made note to see my family doctor and press for proper diagnosis. Am I wasting too? Will it catch up with me? I can’t walk some mornings, I hold walls, railings, to pull myself along. What parts were the disease? I was told it was fibromyalgia from PTSD. I made note of the tests that could tell me.
The dinner was uplifting and heart breaking, the support. The scientists working on this! The fight, the force behind us, but also flattening. All this, even with all this, why aren’t we closer? Why aren’t more people fighting for these boys. It seemed so close. But not close enough for us. I felt helpless.
The next day was the walkathon. Hundreds more out to support and fight this disease: the park it was in was gorgeous. A winding river bed of majestic trees. We met more people who inspired us. More words of kindness and support for Douglas, more people also fighting. We were happy to share information that may help the parents avoid some of the lessons we learned harshly that doctors didn’t know of.
A lot of people are affected by this disease. It is the most common rare disease. If it weren’t categorized as a rare disease would we have the cure by now? In a video interview Douglas explained a few things about the disease. They asked him how does this affect the family? His answer was, it does affect my family. I joked fashion wise. We have to wear sneakers and comfortable things for lifting and helping. No long necklaces dangling. But the deeper answer: Trauma, emotional distress, negative coping tools, the negative affects from those negative coping tools, overcoming those and years of work and the medical affects of stress. But through the progression of the disease, we were forced our own progression, in mourning along with his mourning of the abilities he lost and looses, with each loss there was a self discovery and a growth for everyone in some ways.
Suffering can be a good and beautiful thing forcing change and uprooting old beliefs that do not serve us, even though it is sad and cruel, hard and ugly. It brings change and truth. He became a better man than those around his sisters. Maybe it was our suffering he saw and his own. His priorities were different, not about manipulating girls for self gratifying pleasure or parents for money and booze for “bro” parties but about just surviving. It forced a deeper reflection inward and a deeper more sensitive man came from this. And maybe he still would have been this man even without the disease. But maybe we wouldn’t have worked so hard as a family and as people to overcome. There were permanent injuries to us all and we were changed, but we went on, were forced eventually with the process of grief and greiving to face our own shit. We will keep finding a new way to go, a new way to adpat and a way to go on as each new loss presents itself. I have felt guilt for thinking would it be easier to just have it over with now, so we can move on and just grieve his loss already? But I know I am greatful for every extra day with him, he has had many passed what we thought we would have with him. I just hurt over his suffering, and how long we have been forced to grieve.
We went on to Niagara Falls. I drove. I took the scenic route through farm lands and vineyards. The Summer breeze was everything! I rolled down the back windows so Douglas could feel it. It was much easier than out Europe journey but I felt emotionally exhausted. I had trouble being in the moments, feeling the beauty, I was detached, I was in someone else’s body, I was not there. I just went through the motions. I stayed focused on the road and on the tasks. I felt the trip wasn’t real or happening and wondered how we made it so long in Europe. So did Douglas. How did I do that he said a lot. The falls, a magical thing, and I sat there, tried different angles, tried closer, tried under the spray but I felt nothing. I know it’s how I survive, I know it’s science and my brain’s way of protecting me. But I wanted to be there with them. I wasn’t.
A lady in a hotel restaurant we stayed in asked on our last day what Douglas had. Her grandson had the same thing. A lady in a mall, came and asked as well, her son is needs a more evolved wheelchair to support his breathing. I misunderstood her stares and felt guilty after for misjudging. I assumed it was a mal intent type stare but she was just wondering.
On they way home an airport employee told us there weren’t enough people in wheelchairs to warrant actual accessibilty. I thought that was a ridiculous statement. They stay home because it is inaccessible. And Well yes, of course. You ask them to leave parts of their bodies and hand them over to you to potentially damage under the plane, and to be helpless on board and aircraft for hours, of course. I wonder how many would travel if they could. I know the life it brings back to my brother, I know he deserves better, and he deserves oppurtunites to live life just as much as anyone. Travel does that, it is life, it is healing, it makes you forget your reality for a while! Airlines may need to look at why people in wheelchairs are not travelling more, instead of assuming “there aren’t enough of them” and spreading this logic throughout their employee culture.
I believe that it is not accessible at all if you have to leave your aids. I do not believe it should even legal to ask someone to leave their wheelchair for transport services. Not enough is being done to protect those passengers by anyone. It is dangerous, life threathning, undignified and cruel to ask them to leave their chairs. They are adapted for their comfort, mobility and safety. I can not believe we live in a world where people are forced to be treated so badly in order to travel. To live life. And I know there are more battles and things to feel this same feeling over but this is today’s battle.
The government, the airlines, transport Canada should be ashamed of their out dated and inhumane policies. I get a heritage building having no access for wheelchairs, but newer aircrafts? We tried making complaints to airlines but got generic responses from “Tom”, and “Greg” and “Hilary” some copy and pasted.
I learned a lot more on this trip. We faced the truth a lot more on this trip. And maybe our patience are wearing out. My brother decided to cancel his next trip to Florida with my six year old niece on her Make a Wish trip. He decided to give up again. Which took so much from him last time. He speaks so pridefully on the radio about how he stopped giving up to do his last trip, how he broke down walls and fear to do it and how much life it brought back to him. But he is giving up again. I understand why. He wouldn’t if he didn’t have to but it takes so much out of him. And I wondered how we ever did our last voyage. I lost a lot of hope and I feared for the future of a lot of people affected by this disease but also accessibility in general.
I still haven’t emerged fully from my shell since or been able to take the time to write this post until now. A month later. It really just was what it was. In a speech Douglas did recently for the Positive Thinkers group in Newfoundland, he said he has accepted the disease. I haven’t, I never will. I won’t and I won’t accept that this is good enough for anybody. I think he deserves more. All those families deserve more. Time is not on our side here. They deserve more than just wasting away and waiting and mother’s carrying their adult sons up 14 rows on the way home from these discoveries while governing bodies get it together. I’m done waiting but I am forced to wait and wait. I feel so grateful to be my brother’s sister, but it isn’t easy and I haven’t been a pillar of strength the whole way through and I know I am lucky to have him in any capacity. But I have been carrying so much anger for so long, a break would be nice. One less thing to piss me off would be nice, so airlines please add a removable wheelchair seat with tie downs in the front row for wheelchairs, let my brother travel until his last breath, take at least that off off me please. Maybe we will take him down south for the Winter?