Friday, 8 July 2016

Validity rules for the new Games: Turning a corner...

Finally, an answer. But having my suspicions confirmed, did it make me feel any better? Did it make a difference at all? I can't say that it did, to be honest. I still had Pain, I still couldn't walk; I wasn't really any closer to a solution or a way to work around this new disability. Well, not so much a new one anymore. It was 2 years now I had mobility issues, since that day when it all fell apart. Being right and knowing the answers in this didn't really make a huge difference. Where to go from here?

I returned to the Netherlands once again, with a wheelchair posse of airport staff and the sad realisation that this is the reality of my travelling future. This was the future of being disabled. While it sounds quite confronting, it really wasn't as depressing as it sounds. I could still do things, I could still be mobile and live. A wheelchair, a walking crutch or stick, really what did it matter if I was still out there in life?


Finding my new identity. I was still me, surely, wasn't I? But how much of being out there in life was I really? I was stuck at home mostly. Every time I wanted to go out for simple things, like groceries or bread, it became such a huge undertaking that a simple trip would take me days if not a week, to recover from. God forbid if I forgot sonmething - if I forgot something and was downstairs, so sad too bad, there was no going back up! It was so difficult that even breaking a trip down into rest-break paused increments took so much effort; with the impossibility of the task soon becoming evident. I still did it occasionally, pushing myself to breaking point if only to get out of the house for a while.

One day I pushed so far that I came home, cried for hours and it took me nearly 3 weeks before I could even think of going out again. I was so sick of and so over always struggling, everything being so difficult, costing me so much energy that I just didn't have anymore. The unbelievable rudeness on public transport. By all means sit in that seat for disabled and old people if you want. But please, keep your eyes open for anyone who may need that seat. Don't wait to be asked to stand by someone else; because I can tell you that the very last thing I want to do is admit to anyone I need a seat for invalids! Frankly, you shouldn't need to be asked because one day, you could be that person who needs that seat. And don't pretend you can't see what is around you! Headphones don't make you invisible, neither does staring at your phone. Just being disabled is all you really need to become invisible...

One thing I really loved about Poland was the manners and consideration shown to others. It was the country where you would see old people being helped with their shopping in and out of buses; where doors were held open for other people. Just getting onto a tram, it was like the men had firecrackers in their pants as they leapt up for anyone old, disabled, with kids or even just women! I found that chivalry a lovely old-world etiquette: charming, civilised and very unexpected. Back then, my legs worked pretty good, so most of the time I just smiled, thanked them and let them to sit back down. However still to this day I am touched and surprised by this. These are the manners my train-travelling school years dressed in a recognisable uniform instilled in me; the (latin) motto of our school was "Let us be judged by our acts". In Poland, people looked out for one another, helped each other. One night while waiting for the airport bus, I fell over with my huge backpack on, and people came from everywhere, rushing to my assistance without hesitation (or laughing!). Now the dutch do have manners... well sometimes, but nowhere near the same degree. I have been helped by some wonderful people here, but I have also been ignored more times than not. People talk about "invisible disabilities"; I don't have so much 'invisible' disabilities, but quite often feel that I am invisible because I am disabled!

I just got tired of all that fighting: fighting to get out of the house, fighting to get down the stairs, and fighting to get anywhere. Then the unbelievable struggle to get back home meant that the journey was not worth it to even begin. I am a fighter, but these fights just seemed to get me nowhere. I became more isolated, more withdrawn. More living in books and reading; only able to experience life through the written word and films. It was a very lonely time, a time when I lost touch with the outside world. I couldn't face telling people that I was still disabled (that I wasn't getting better...) and that the one hope I had was so unobtainable, so far out of reach that I was more likely to run a marathon than I was to get it. I wouldn't go as far as to say I was depressed, because it wasn't the same as I had felt before. But it was a melancholia; a general greyish hue colouring my days, with a splash of apathy and flashes of frustration and anger.

I had to find a way out of this, I had to paint my world into colours again! What were my problems, which ones could I actually find a solution to and which ones were out of my hands?

Pain: well... Out of my control. Can I get a spinal cord stimulator? Where? Is it possible under my health insurance, and if I need to pay, how much? Is it really even something I want to do? Am I even brave enough? Rehab? Where could I do that? Could it improve my situation right now?

Disability: out of my control. Do I need to get a wheelchair to go out? How can I make going out easier for myself? How can I be more independent again? Can I perhaps swim, water is nice and I was a swimmer back in the abled-days. But I cannot even get to the shops, how could I make it to the pool?

Getting around: it was so difficult, public transport was becoming impossible, or so difficult it wasn't worth it. I cannot keep going as I am right now.


Was there another way? Was there a solution, how did all the oldies and other disabled people get around? In Amsterdam, we have a special type of bus/taxi, which is a type of supplemental public transport. You get a card, you can book a ride and it will take you where you want to go; albeit with a few caveats. You need to book in advance, so it takes some of the spontaneity out of it. You also have to be flexible with times; allowing half and hour around the booking and another half an hour to actually get somewhere, as there other passengers. And you are limited to the city itself, for longer trips there is a separate service. However, it seemed to be a decent solution to my problems. It cost basically what you pay on normal public transport, you are guaranteed a seat, and it was door to door. I applied for it, and was approved straight away. I was so happy, such a small thing that could make such a difference to me.

They also sent someone to my flat to see if there was anything else I needed. This was unexpected, as I was pretty much fine at home, apart from those stairs! I had a shower stool and a walking stick for inside. However, this woman was wonderful; she really looked at my situation, and said how sad it was that I was so housebound. While I never really thought about it in that way, what she said next really blew my mind. I was eligible for a scootmobiel (a motorised scooter, old lady scooter, whatever!) and also able to get a stairlift installed on the staircase so I could go out more easily! Wow, this was beyond my wildest dreams! Although I never pictured being in my 30s and dreaming of an old lady scooter and stairlift; compared to what I had been living thus far, it was far beyond what I had imagined and hoped.

Freedom, pure unadulterated freedom, blowing through my hair and whistling in the wind - I was more alive than I had been in a very long time! I tasted the same freedom as I used to have on my bicycle, no need of public transport - no need to struggle all the time. I could go shopping, to the markets and wander the streets. I could visit friends, meet up with people for a drink or dinner. I could do what I pleased, without waiting to be picked up or worrying about how if I would be able to manage. I could be spontaneous again!

I went out just for the fun of it for the first time in years. I rejoiced in the wonder of the long days of European summers, laughing with the tourists who flocked to the city. I christened my red-is-the-fastest-colour scootmobiel as the Batmobiel, with spiders on the front to make it cooler (and tougher!). I found the best bridges to make the speedo hit 17km/h going over and around the canals; zipping in those bike roads like a bat out of hell! It was joy itself - I was free at last!!


Regardless of what I was going to do, I needed to get in some rehabilitation. Something: movement, strengthening, anything really. I needed to make the best of what I had. I talked to my doctor about it, and was referred to the rehabilitation hospital for what is known here as "revalidatie". Pages and pages of questionaires were sent to me to fill in and send back. If you have ever been assessed for anything, the first port of call these days is usually a maze of questionaires, repetitively worded questions with nuanced differences, catching you out if you aren't paying attention. All getting you to rank things in nice, tidy, mathematically neat and quantifiable statistics. Of course, Pain and disability, not to mention emotions and feelings are rarely so easy to equate with simple words and rankings. I guess there always needs to be a starting point to get a bigger picture, so as to assess and know where to begin. But, despite knowing all this logically, I always find myself getting cranky filling in these stupid forms. Not only the added difficulty of doing it in a language that isn't my mother tongue, but because I find the questions ridiculous at times and others downright alarming. Plus the fear that I may not be answering "correctly", and may miss out on what I need from just not being a big enough drama queen! And this was just the first of many to come... Now I'm quite the pro!

I saw the revalidatie (rehab) specialist and went to the information seminar for this "pain revalidatie" program. It soon became evident that this was a more psychologically based 'acceptance' program than the purely physical rehab program I wanted. While there is nothing wrong with this type of program and it can do a lot of good; I've already done it - multiple times! I have accepted my annoying Pain travel mate and really don't want to go into that indepth discussions about how much it has taken from me, or how bad I feel because of all that I cannot do anymore. That will make me feel worse, to be honest. I have accepted it, I just want to move on. There was some physio rehab in it, but not the specialised type I was looking for. And there was no way in the world I wanted to be in a group session with people taking about how much they 'suffer' with pain - I hate that word, I never 'suffer' with anything, apart from suffering with stupidity, or insufferables!

The positive I took away from this, is knowing that this was NOT for me. There is a great deal to learn from recognising those things, treatments or therapies that are not for you. It means you can cross it off the list, and better use your time to find out what IS right for you. Much better to trust your gut and make it your own decision, rather than suffer your way through a treatment or therapy that will make you feel worse, or that you have given up your control over. Active decision making beats passive going on with stuff and resenting it. In a life where you have so many things outside your control, take control of what you can and while you can!

It wasn't all for nothing. What it did lead me to was something even better... The revalidatie center had a gym that was attached, but also somewhat independent from the center. It was a gym and pool, where you could follow specific personalised programs, but also classes. The pool... i was going to swim!


I was assessed by the sports therapist at the rehab gym and indicated I wanted to swim. As an aside, I asked if they had experience with CRPS people. After countless physios and even the revalidatie specialist having little experience with this lesser-known condition, I was expecting much of the same, until... "yes, I have had many clients with CRPS, but movement is essential for CRPS so you should be able to get some results..." It was music to my ears, the defining moment after years of drifting. I had a goal, something to push myself with that I had hope of achieving. If only I knew then how life changing and transforming it would become.

There is something that is intrinsically healing about water, even the chlorinated and chemically treated kind. And in that water I began to find who I was again after years of figurative aimless wandering with no direction. Even swimming with one arm and very little leg-kicking action, I realised I was actually quite good. Better than good, I swam better than some of the people who had 4 limbs that worked. The more I worked at it, the better my stroke became and I felt NORMAL. I felt the magic felt while ice-skating, like I could fly again! Pain can hardly compete with that magic! In the water, my body knew no gravity; weightless and buoyant, I glided through that water like it was air. Free as a bird, as a fish, without a care! My aquatic meditation, my joie de vivre, my ultimate escape from the Pain and disability that had bound me for so long.

I made some friends too, at the pool. It was wonderful getting to know the people there and making actual connections with people that saw me not as 'handicapped' or 'disabled' or even as chronically sick/in pain. They saw me as myself, saw me as a swimmer and a fighter again.

What also came from this was the realisation of what I did want. I didn't want a rehabilitation  program that was going to focus on accepting and all that. I didn't want to remain on that same path that had no end destination. What I wanted was a whole new approach. That idea that came up during the long Games, the possibilities that I had never imagined: I wanted to do everything I could. I was going to fully explore my options medically, with the spinal cord stimulator. I wanted to see if it really could be an option, if it could really be a possibility.

If it turned out it wasn't, or if I decided I didn't want it; well, at least I had tried! My destiny in my own hands, I was going down the rabbit hole and I had no clue where it would lead me. But without a doubt - nothing would ever be the same again. I had that feeling of heady freedom back, I was back! Mobile with my batmobiel, swimming like a fish and I was flying in my head. Nothing would be impossible ever again!

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