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The Joys and Challenges of Family Visits With a Disability

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Thirty years ago, I gave my daughter up for adoption. Eight years ago, we reconnected and have been keeping in touch ever since. Two years ago, my parents flew my daughter and granddaughter from Ontario to Vancouver so we could all meet them. Since I live in a Family Care Home, they stayed at my sister’s home in Mission along with my parents who visited from Victoria. It was a wonderful week for me, and I immediately began saving so I could fly them out again someday.

Last month, I flew my daughter, her partner and their two daughters out to Victoria where my parents live. This time, I took the ferry from Vancouver to stay with them in my parents’ home for 10 days. I had a terrific time, and enjoyed bonding with my granddaughters and meeting their father. However, because of my disability and chronic pain, I faced many challenges, some expected and some not so much.

The first challenge, of course, was the traveling. Toileting is always foremost in my mind when I am away from my home for more than a couple of hours. I am an ambulatory electric wheelchair user, but both shoulders are “frozen” so my range of motion is severely limited. Using public washrooms and negotiating my clothing without assistance is a pain in the ass for me, especially on a ferry, where there is a nasty metal lip at the entrance, narrow spaces and heavy metal stall doors on springs. So, I must make sure I drink very little before I leave and while traveling. And don’t even get me started on bowel movements! But I’m not complaining. I made it without an incident!

Because I don’t have an accessible vehicle, can’t afford a taxi and don’t trust HandiDart, I use transit to get to and from the ferry terminals. As a result, after loading my chair with bags and one last bathroom trip, my 5-hour trip consisted of a 15 minute wheelchair ride, a skytrain, two full buses, a 1-and-a-half hour ferry ride, another full bus, and a 15 minute wheelchair ride. First order of business when I arrive: pee! Second order of business: a glass of water and a stiff drink! But I’m not complaining. Passengers were kind and the ferry ride was beautiful.

My parents’ home is fairly accessible, so with a bit of slow and careful maneuvering, I can get into it. But since there are so many tight corners and narrow hallways, I simply parked my chair where everyone was hanging out (usually the patio), and used it as an armchair, getting in and out of it when I needed to. This meant I was on my feet about three times more often and longer than I am accustomed.

Showering, dressing and toileting were all more of a challenge than normal as well. At home, I have a shower chair, raised toilet seat, hand holds and a caregiver to help with all of my needs. While my parents try to accommodate me as best they can, their home is just not set up for my limited mobility. But I’m not complaining. My mother helped me shower and dress, and I have learned to be very adaptable since becoming disabled, so I managed just fine without my aids!

My sleeping arrangements must also be adapted. Because of kyphoscoliosis, I use a hospital bed at home so I can raise my feet and head to a cradle-like position. When away from home, I must arrange pillows under my knees and shoulders/head, then try to get in without knocking them all over. Once on my back, I’m like a turtle on its shell, so I’d better have my water, clock and BiPAP mask at hand, or I must get out and do it all again! Fortunately, in the mornings, I was awake about 2-3 hours before everyone else, so I had plenty of time for the meds to kick in, my body to stop aching and the spasticity to dissipate. But I’m not complaining. I slept well, and was treated to sweet morning baby grins every day!

Since I use a mobility device, it is automatic for me to plan ahead, check for accessibility, plan travel routes etc. So while everyone else was getting themselves ready to go, I always had my face buried in my phone making sure I could be with everyone that day. Because I lacked an accessible vehicle, each day I left earlier and returned home later than everyone else in order to take transit or ride my chair to our destinations.

On one of those days, after spending several hours at the fair in the heat, surrounded by constant noise and smells, and being face height with hundreds of people’s butts, the bus home never arrived — nor did the next one, or the next. A taxi would have been an hour and a half wait. So a 15 minute car ride took me an hour and a half to negotiate. Still, after a rest and a cold beer, I got up to cook dinner for everyone, since it was my turn. But I’m not complaining. I made it home safe and sound, and the meal was delicious!

Sometimes we would walk together to our destination. I liked those times best. My granddaughter discovered the joy and convenience of riding on NanaJay’s lap, so it was a wonderful way to bond and earn trust. The baby also enjoyed sitting on my lap while I stroked her back, and my controller buttons were a great source of entertainment and distraction when tiredness turned to fussiness. Plus, power chairs are very handy when on a walk, especially when you’ve left something behind. It’s easy to zip back home to retrieve the forgotten items and catch up down the road!

Going to the beach was an adventure. This is where I felt most out of the loop, most like a grandmother. While everyone headed down to the sand and into the water, I sat atop a grassy outcrop, watching. At one point, I was helped down to wade in the water and sit in a folding chair in the sand, but I feel like a sack of potatoes in a normal chair. My back and neck started to ache and my headache got worse. I’m simply much more comfortable in my own chair, even though it can be isolating. But I’m not complaining. The walks were lovely, and my granddaughter always included me!

Since I’m vegan, and to lighten the load on my parents, we shared the responsibility of cooking dinner by taking turns. Cooking a meal for six is more time consuming the just cooking for myself. Because of chronic abdominal spasticity, I can only remain on my feet for about 45 minutes. The minute I stand up, the muscles in my abdomen and ribs begin to tighten, and the longer I stay on my feet, the harder it is to remain erect and to breathe. After I finished cooking, as people were being served and beginning to eat, I was having a cigarette and waiting for my belly to relax, as I become nauseous if I try to eat right away. But I’m not complaining. I loved watching my family enjoy my meals!

On the fourth and seventh days, I woke up exhausted — not mentally, but physically. The activity, tourist crowds and time spent on my feet had caught up to me, and I knew I needed to recharge. My family treats me with respect and inclusion, and almost always assumes I can rather than can’t. The problem with that is they sometimes forget I face daily challenges and fatigue because I’m disabled. On those days, my body would groan at the notion of going out again for the day, but I didn’t want to miss a moment or disappoint anyone. But I’m not complaining. My family was helpful when I asked, and I got to enjoy watching them have fun!

The trip home was just as long and tedious as the trip over. The day after I got home, I spent virtually the entire day on my ass, chilling out and watching Netflix. That night, I slept 3 hours longer than usual. It has taken me about a week to feel “normal” again.

But I’m not complaining… In fact, I’m content and incredibly grateful!

Less than a decade ago, I was paralyzed, half-blind and unable to speak, lying in a hospital bed, waiting, wanting to die. Today, I’m cherishing memories of time spent with special people I would never have known had I died as I’d wished. I believe this experience is much more celebratory and joyful because of my disability. That I was able to push through in spite of exhaustion, join in regardless of accessibility, face new challenges despite uncertainty, and navigate environments not set up for mobility devices so I could fully enjoy the company of my family is something to celebrate and be proud of!

I’m deeply grateful that my access to a mobility device, my family’s acceptance and inclusion of my disability, and my own tenacity and autonomy has allowed me the independence and opportunity to enjoy these experiences! And now I know I can do it again. Maybe next time, I’ll fly to them…

Getty image by Disobey Art.

Originally published: September 23, 2019
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