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!

Decisions, decisions…

Voor Nederlands zie de vertaling onder aan de pagina.

Today a question arose which has caused lots of issues in my life over the last few years. But before today I didn’t dare to face the problem in my life that is pointed out by the question.

How is a person supposed to know what they want to do for the rest of their lives when they are in their teens? I was 17 when I started studying law. I was confident that was the right choice. I knew what I wanted to specialize in and why. I was the kind of person who had their whole life mapped out. I was going to study law, graduate Suma cum laude, work at a prestigious law firm specialized in corporate law and become rich and powerful. Saying this now I feel ridiculous, but I had a good reason for such a huge goal… Being differently abled and a wheelchair user I am and feel treated as worthless and stupid or underdeveloped. My opinion often is interpreted as ill-founded or not relevant, which is why I wanted to become rich and powerful professionally because I believed then people would finally see me for what I was and treat me as a valued, worthy and intelligent person. I was sure that was the way to make people treat me respectfully. After two years of studying, I had to quit because I had Pfeiffer decease and failed too many exams. Which sucked of course but I wasn’t going to let that stop me! So I decided I was going to study international law in The Hague. I was still confident I wanted to study law, but I didn’t want to do the same program because I knew that would demotivate me even more. So I started in the Hague ready to kick ass; however, a month into the program I realized the traveling was taking its toll on Aki, my service dog and me. The only solution I saw was to move house, which meant moving out of my parents’ house. That decision has changed my life and personality in such an extreme way I never could’ve foreseen.

Because I moved so far away from everyone, I was depended entirely on my self. Being so alone gave me the time, space and opportunity to develop my way of life, my opinions and morals. Listening to the quiet of being alone is such a valuable lesson in life. It gives you the possibility to look in the mirror and evaluate your life.

I always was an eco-friendly person. I always believed in the natural way of things, but when I was on my own without so many influences of others, all those interests were magnified and morphed into a strong desire to become entirely in tune with mother nature which also morphed in a firm belief in empathy and strive to achieve complete empathy. If you look at yourself in such a naked way and start to believe in the natural way of life in such an absolute way you have to learn to love yourself for who you are as well. In the last three years of living alone, I gained confidence and love myself on the inside and out. Because of the increase in self-confidence, I could finally see that my goal of becoming rich and powerful had nothing to do with my dreams but had everything to do with how I perceived myself because I believed I needed the approval of others. Once I let go of that need, I lost my reasons to study law.

So I think there’s something wrong with the system. Making a teenager choose what they want to do with the rest of their life is insane. I made that choice, and I made the right one at that time but the wrong one for who I am today and now I will be drowning in student loans for the next 15 years.

 

 

 

 

 

 

 

 

 

How can we know who we are when we haven’t even lived yet?

 

Translation/vertaling:

Vandaag hield een vraag mij bezig die al jaren voor veel problemen in mijn leven zorgt, maar voor vandaag durfde ik het achterliggende probleem niet onder ogen te komen.

Hoe moet een tiener op zo een jonge leeftijd beslissen wat ze met de rest van hun leven willen doen? Ik was 17 toen ik begon aan mijn studie Rechten. Ik was er volledig van overtuigd dat ik advocaat wilden worden. Ik wist precies in welk vakgebied ik mezelf wilde specialiseren en waarom. Ik was het soort persoon dat haar hele leven al voor zichzelf uitgestippeld had. Ik zou Rechten studeren, daarna rechtsgeleerdheid aan een universiteit, Suma Cum Laude afstuderen en bij een hoog aangeschreven advocatenkantoor gaan werken specialiserend in bedrijfsrecht waar ik macht en rijkdom mee zou vergaren. Nu realiseer ik me hoe belachelijk dat plan was, maar ik had een goede reden voor die hoge lat… Als rolstoelgebruiker zijnde word ik vaak gezien als minder waard, dom of onbelangrijk en dat was precies de reden voor mijn droom naar rijkdom en status, ik geloofde dat mensen mij dan eindelijk voor vol zouden aanzien omdat ze er dan niet meer omheen konden, die status zou mijn manier worden van respect afdwingen. Na twee jaar Rechten studeren moest ik stoppen omdat ik de Ziekte van Pfeiffer kreeg en daardoor zakte voor teveel tentamens. Dat was natuurlijk balen maar dat zou mij niet stoppen die droom te verwezenlijken! Dus besloot ik International and European Law te gaan doen aan de Haagse Hogeschool omdat ik niet twee keer dezelfde opleiding wilde doen, dat zou alleen maar demotiverend werken maar ik was er nog steeds wel van overtuigd dat ik rechten wilde studeren. Dus begon ik in Den Haag vol goede moed klaar om dat klusje te klaren; na een maand begon ik me te realiseren dat het heen en weer reizen te zwaar werd en ook zijn tol begon te eisen bij Aki, mijn assistentiehond.

img_2959

De enige oplossing die ik zag was verhuizen, dat betekende dus voor het eerst op mezelf wonen. Dat besluit heeft mijn leven en persoonlijkheid op zo een drastische wijze veranderd, dat had ik absoluut niet zien aankomen.

Omdat ik zo ver van al mijn bekende ging wonen, was ik vanaf dat moment volledig op mezelf aangewezen. Het alleen zijn gaf me de tijd, ruimte en mogelijkheid om mijn eigen levenswijze, meningen en normen en waarden te ontwikkelen. Luisteren naar de stilte in het alleen zijn is volgens mij een belangrijke les in het leven. Het geeft je de mogelijkheid om in de spiegel te kijken en je leven te evalueren.

Ik was altijd al een ecologisch ingesteld persoon. Ik geloofde altijd al in dingen op de natuurlijke wijze doen, maar toen ik eenmaal alleen was zonder al die invloeden van anderen zijn die intresses vergroot en vervormd in een sterk verlangen om helemaal in evenwicht te komen met moedernatuur, dat vervormde zich weer naar een sterk geloof in empatie en een streven naar het bereiken van complete empatie.

img_2979

Als je op zo een naakte manier naar jezelf kijkt en begint te geloven in de natuurlijke gang van het leven op een absolute manier dan moet je ook leren om van jezelf te houden voor wie je bent. In de laatste 3 jaar van op mezelf wonen, ben ik gegroeid in zelfvertrouwen en kan ik nu zeggen dat ik van mezelf hou voor wie ik ben, van binnen en van buiten. Door het verkrijgen van meer zelfvertrouwen kon ik eindelijk zien dat mijn droom naar rijkdom, status en macht niks te maken had met mijn dromen maar alles te maken had met de manier waarop ik mezelf zag omdat ik dacht dat ik de goedkeuring van andere nodig had. Toen ik die gedachtegang losliet verloor ik dus ook mijn redenen om Rechten te gaan studeren.

Dus denk ik dat er iets mis is met het systeem. Tieners dwingen om op die leeftijd te kiezen wat ze willen doen met de rest van hun lezen is gestoord. Ik heb die keus gemaakt en op dat moment was dat de juiste keuze maar het is de verkeerde keuze voor wie ik nu ben en nu verdrink ik voor de komende 15 jaar in studieschulden.

img_2980

 

Hoe kunnen we weten wie we zijn als we nog niet eens geleefd hebben?