A peek behind the curtains…

People often have a misconception on why life in a wheelchair is so hard sometimes (read: most of the time). Usually, it’s not because being in a wheelchair is hard… 95% of the time it’s because of all the hassle we have to go through to have a fun and fulfilling life.

Yesterday was a fun day! A happy day, we had a birthday party at my best friends’ house. I can hear everyone thinking ”what is she going on about, the only thing she had to do that day was a birthday party, that isn’t so difficult is it?’ Well, I hate to burst your bubble, but unfortunately, life just isn’t that simple when you’re me…

The day before I had lots of errands to run, so my body needed every bit of rest I could give it. Which meant I spent all morning in bed and got up around noon, I called for assistance with showering and getting dressed. Unfortunately, they were busy, so I had to wait for 20 minutes or so. By the time I was dressed and had done my hair it was 1:30 pm. So I went out to take Aki for a walk. By the way, did you notice I didn’t mention breakfast anywhere? Well, that’s because I time flies and I didn’t have time. While outside I ran into a friend, so the walk took a little longer than planned. On my way home I went to the bookstore to buy a birthday present…

The bookstore is small, and the isles are narrow it is hard for me to maneuver through it with my chair. But I won’t let that stop me. Otherwise, I wouldn’t be able to shop anywhere. So I find the book I’m looking for and go to the counter to pay for it, but the counter is so high I can’t even reach it! So I tell the lady standing behind the impossibly high counter ”this thing sure isn’t made for midgets!” she looks at me like ”WTF?” and takes the book from my hands. I tell her I don’t want to pay cash when she asks, and I can see her wondering how she’s going to fix this because the pin machine is so damn high, so like they always do in severely inaccessible places like this she pulls on the machine like crazy wishing the cord was just a few centimeters longer… I look at her with a crooked smile on my face and tell her I’ll manage. So I reach for the machine, put my card on top. Fortunately, I don’t have to spend 10 minutes trying to get my card to fit in that tiny opening in the front, thank God for technology! Anyway, after my card connected, I needed to punch in my code without being able to see the buttons because they were so freaking high. Finally having paid for my purchase, the lady behind the counter was kind enough to bring the books to me in person instead of reaching over that giant counter.

By the time I came home, I was tired but still hadn’t had any breakfast, so I called for assistance. Like the lucky person that I am I had to wait for another 30 minutes for help because they were extremely busy. I’m not the kind of person that then sits around waiting for 30 minutes, in the meantime, I gave Aki his lunch, booted my MacBook to see what time I needed to take the train and logged in to book the assistance I need to get in and out of the train since Dutch trains still are not wheelchair accessible. I mean seriously, the 1990’s just called, they want their trains back. Anyway, I fixed that, and while I was busy, the woman who’d be assisting me came in and asked for instruction. I told her what quick very late breakfast to make me and went on preparing my trip to my friends’ birthday party. The taxi I decided to book for the journey home I booked for 2 minutes after midnight because it was a few euros cheaper if I did so, yes, crazy I’m aware!

Before I called for assistance, yet again, I Facetimed my mom real quick to let her know I’d be at my friends’ house, because my mom worries a lot. After changing clothes…

I had to hurry up like a mad person to be able to catch that train, but we did. Arriving at the station, I even had a few minutes to spare, and by the grace of God, the person who has to help me get on the train was there as well. Because 80% of the time they are not and then there’s even more hassle, but apparently I was lucky that day.

After I arrived at The Hague Central station, I had to take a bus to get to my friends’ house. After having waited for 20 minutes, the bus arrived, and when I saw a female bus driver who wasn’t looking all that happy, I knew she was going to make some issue about my wheelchair on her bus. She did. She made a whole point about me not being allowed on her bus if I wasn’t going to be strapped in like I made an issue about it, which I didn’t. So everyone on the bus was looking at me… Strangers started to touch me trying to get me strapped in because that bus driver couldn’t even make an effort to do it herself. Anyway, after lots of fussing, they got me strapped in, I couldn’t see which stop we were at or where we were going in that position, but I tried my hardest not to get annoyed until some concerned citizen kept asking me a hundred question in a very degrading way about where I was headed and explaining how public transport works. I tried to tell her I go with public means of transportation all the time, but she just wouldn’t listen to a word I said. To make matters worse, she asked me if I am blind…

So I got out of the bus and had to walk 5 minutes or so to the party. On my way there the sidewalk was blocked by a street light in the middle. So I had to go on the road in the dark until I reached an accessible path. Dangerous of course, but it happens all the time. The people planning these pavements don’t seem to have a logic bone in their body.

Anyway… The party was fun! Amazing, kind, gentle and caring people. I stayed until my taxi came at midnight and brought me home. Once I was home an hour later, you’d think I wanted to go straight to bed. You’re right. I did. But I had to wait another 20 minutes for assistance to get ready for bed.

As you can see just a birthday party is never just a party for me… As you can see the wheelchair is not the issue here. It’s the rest of the hassle that comes with it, so this is precisely the reason why being in a wheelchair is so damn tiring and hard sometimes!

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