A few months ago I decided to ask for a disabled parking permit for Genny. Every time she needs to get out of the car I go nuts from worry and start counting the steps she will need to take to get to destination. Then of course I worry about the inside of the building, how far she will need to walk and whether she will have to stand. Standing is no longer an option for her and walking is excruciating.
So we got the parking permit and now, at the very least, I can park closer to whichever entrance as required. I know this brings a certain level of comfort to Genny but I also realize it’s always a huge stress for her because standing is so difficult. Still she looks perfectly normal and one wouldn’t be able to tell of her difficulties unless she mentioned them. It may be that since she was tiny, she has had to learn how to function like so and honestly she is doing an amazing job at pretending.
So this little introduction brings me to Montreal last week during our visit to the neurologist. The first thing that happened that sent me to a bad place was when I dropped her off at the autonomic lab for the orthostatic intolerance testing. It was really bad because of course, it’s a HUGE hospital and when I came in I omitted taking a wheelchair because it seemed to me like they were carrying signs for various department and to be honest, I am still somewhat shy about “borrowing” them. BIG MISTAKE. Genny of course was struggling all the way to the lab and was sitting every 10 steps or so – and when there was no seat I thought for sure she was going to pass out. Once we got to the lab everything was good, but I told them we couldn’t get her registered as she couldn’t walk – bad planning. I said I’d go do it and would come back soon. To that, they agreed and it didn’t seem to be a problem. The lady at registration was very kind and understood that my daughter couldn’t be there. That was fine. But then, she told me to go to the “accounting” office which I did. They had to call the “person in charge” who insisted they needed to “identify” my daughter who by the way doesn’t have any kind of photo id card as she hasn’t been in school for 7 years now. I tried explaining that she couldn’t walk and was in a terrible state at the very moment but still, she kept saying “yes but it doesn’t matter, (and finally) next time you HAVE TO bring her over here”. It so didn’t make sense and I so wanted to say NO but then of course I lied and said “OK, we’ll make sure to do that next time”. The so called “boss” just didn’t understand – we were in a hospital setting – how could that be?
Then, a few days after the diagnosis we are walking on clouds. So we decide to go shopping and pick a parking spot with a disabled sign (we have the permit with us) closest to the main entrance. Always as worried for my daughter I count about 15 steps and a flight of stairs of 5, then another 10 steps to get into the mall. I know this will be difficult and again I am holding my breath and thinking that if I can just get her to walk in and sit I can fetch a wheelchair as we are right next to the service area.
When we parked in the disabled area my friend was driving and the first thing she said was “oh no, maybe we should have parked further”. To that I replied “why should we have done that – Genny has a permit?”
It turns our there were two morbidly obese women in their 60’s or so, each of them sitting in their automated wheelchair or scooter. As soon as we got out of the car, the first one yelled out “Hey!!! That parking spot is reserved for the disabled!!!!” I felt like a bomb about to explode but I had to act fast so that my daughter wouldn’t pass out and I pointed to my daughter while my friend was trying to explain that we had a permit and then again, the woman yelled “WELL, WHERE’S YOUR DISABLED PERSON???”
There are no words to describe the frustration and rage I felt at that very moment. Had it not been that I had to take care of my daughter, I think I would have asked them to get off their chair and give it to me. I know this must sound crazy but that is really what I was thinking. I often feel that a number of people with less severe illnesses are granted more services and privileges than people with EDS for so many reasons – some of which are more or less easy to understand.
Genny is slowly accepting the use of a wheelchair and says that the anxiety that comes from using one is less than that of calculating the number of steps to destination which in the end is worth the concession. It also grants her the ability to act as a normal teen, that is to go shopping and that makes me very happy.:) As she slips on a pair of shoes and steps out of the wheelchair to look at herself in the mirror, I realize this is not so bad after all!
In the end, the frustration was all worth while and I will keep using the parking spots and chairs regardless of dirty looks.
I was prompted to write this after reading this post. Walking can be so difficult for people with EDS and it breaks my heart to think that people in general have no clue of what it means.