With an Introduction by Eleonora Passeri and life stories by Iain McGeachin, Rachel Quesnel Shilletto, Benita Penfold, Polly Moyer, Rita Francisco, Sandra Brasil, Carlota Pascoal, and Dorinda Silva.
Introduction by Eleonora Passeri and edited by Amanda Rackerby
There are journeys of all kinds. Some journeys take you from one part of the world to another, and others take you on a journey from one point of knowledge and empathy, to another very different place of the mind and heart. Since this is an article on travel, in this introduction, I would like to tell you about what I have learned from my journey from a neuroscientist researcher to parent and patient advocate of Rare Diseases.
When I stared my journey on writing articles with my friends with Rare Special Powers, I expected it to be a very different process compared to my usual procedure for writing scientific papers, however, collecting different opinions or perspectives from patients and the mothers of patients requires similar “guidelines” to those used for pulling together graphs and tables. For example, I see a strong similarity or a parallel to the cells I had seen in a microscope as a researcher to the art I use in these Rare Special Powers articles. Thus, the skills I used as a researcher are still very much present and alive in my writing and information gathering. But, the vast difference comes when I read these parent’s and patients article “abstracts.” It is here that I get a glimpse of the high-stake feelings and emotions. These are articles written from the heart rather than the mind. I have found this writing experience profoundly more difficult because for the first time in my career I now have been able to grasp this rare group’s sufferance. I have gone behind the disease and I have found the person. This is what travel is all about, right? Discovery.
With summer here in our hemisphere, our mind often goes to the idea of the “vacation.” We look forward to a gateway, after all, we deserve a vacation after an entire year of hard work. Our vacation might have been planned for months and now just few more weeks and we will be on a beach or on top of mountain or hanging around a historical city. But what about these rare patients and their families? How do they deal with vacations? Today’s Rare Special Power’s article discloses how these rare people deal with travel and vacations and also provides some suggestions from their past experiences.
This article is not just for these Rare families to feel connected and maybe for a moment not so alone on their path, but it is also for all the rest of us that don’t suffer every day from a rare disease that we may learn a little about this group of people so we can extend our empathy so we all can be a little more understanding and form a connection with those that often have a quiet and insular presence in this world because the world has not adapted. So take a moment from your day to go on a trip with us as we discover what travel is like with a Rare Disease and why these rare individuals decide to take on the challenge of travel. Bon Voyage! Buon Viaggio!
Our family is always up for adventures from day tripping, overnight stays or flying when we are lucky enough to have a trip paid. We invite you to come along with us on an adventure when your child is in a manual wheelchair.
Adventure 1: Visiting Family. How do we manage all those stairs with a 110lbs child? We are lucky enough that our daughter has some strength in her legs so we can physically support her as she pushes herself upward…Safety issues - definitely but the alternative is to stay home and never see anyone and this only works if the stairs are not too steps and not too many. Alternatively, she can do the bum scoot up the stairs but at 12, this is very embarrassing. Or even worse, is picking her up wheelchair and all and carrying her up the stairs, the issues is that you need to remember the brake so the chair doesn't tip and that is big security risk. Too many ways to injure someone.
Need a pee break? Do you know that most bathroom door won't accommodate a wheelchair. Powder rooms are the easiest to manage since the doorway is close to the toilet but some are a real juggling act because seriously who wants to crawl in a bathroom!
Adventure 2: Visiting a new restaurant. Does the table have a ledge under? Then the wheelchair won't fit underneath it, so she's eating on her lap.. How embarrassing! No straw? clear liquid such as water and juice makes my daughter cough and she has tremors - not drink friendly. Straws are our friends. I should be organized enough to always have some in my purse but the reality is that I'm not.
Need a pee break? Sometimes we are lucky and the only issue is that there are no automatic door openers. But there are places that the handicap stalls door opens inward - yes, folks, inwards so how do you close that once the chair is inside. You don't. Do you want a face wash? Well, you may get one anyways because the water hits the sink and the faucet is at face level so free face-wash! I carry hand-sanitizer for this!
Adventure 3: Overnight stay in a hotel. We've ask all the accessibility question for our daughter's need that we can think and we are set. Wrong! What is with these beds that are 3 feet off the ground? She can't transfer from her wheelchair to the bed. The toilet is accessible but there's a tub in the bathroom. Well, that's potential for someone to get hurt. I guess it's a sink/face cloth bath/wipe for us. Space? The room is so crowded with furniture that the wheelchair won't fit to get to the second bed. Well, I guess that's means she's not sleeping in that one. Let's not even talk about nighttime incontinence and getting fresh bedding! Even when you ask for extra bedding. We all know that incontinence underwear is not leak proof.
Oh, there's a pool (!), but there's no lift. Don't try getting someone that's wet out of a pool: It's a real recipe for disaster.
Adventure 4: Overnight stay in a hotel & theme park. See room potential issues above. We are told that this is the place for children with accessibility issues. It's water theme but there's no water wheelchair available. Less than 1/2 of the park is accessible to her wheelchair. Disappointing. This piece was made worst because it was gifted to us and we wanted to enjoy it to the maximum but by the evening we were all ready to pack it in.
Adventure 5: Traveling plans for school trips. I'll admit it. I am not big on school trips, I try to avoid them as much as I can but for some reason, the school is always calling at the last second if the trip is too far with busing issues! So you need to pull up all your cards in finding the proper transport for your child.
Adventure 6: Air flight. Our daughter qualified for wish grant and we decided to go to Disney World. While the park is accessible and she was lavished with attention wherever she went. The rooms came with the same issues as in adventure 3. The biggest struggle was the flight. It was a three hour flight and we tried limiting the drinking but she needed to go. You never realized how small the bathroom is until you need to fit two of you in there and change her clothing as well. Our travel agency book us halfway into the plane and not at the front of the plane where it where it would be close to get to the bathroom. Supporting your child to the bathroom in the narrow aisle is another struggle as well.
Adventure 6: Beach Day. Ever been on sand with your bike it's quite a work out! Some of the bigger beach have sand wheelchair, which are super nice to have. This is the only place where crawling is necessary so we usually get as close as we can to the water so the crawling is minimal and it doesn't look like much to anyone looking on.
Adventure 7: Hiking. So we've scouted the trail out, it's wide path and listed as accessible. But guess what, it rained the night before. So you are pushing a wheelchair in the mud, it's dirty work and your arms will be sore the next day. They didn't warn you that there's some really steep hills. So you are pushing and/or pulling the chair up and down these hills!
Adventure 8: Walk around the block in winter. We are lucky to live in a country will a 4 season. Winter is quite a challenge for us with the snow, sometimes, you only make it to the corner because you pack it in and go home because the chair keeps getting stuck.
These are only the challenges but we make incredible memories and we can recount stories about our adventures. We are always looking for adventures and see what we will discover.
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