Wednesday, October 04, 2006

msb-du-3-- Living with MS

Access denied-Living with MS.

Life is full of strange circumstances of choices taken and choices left to one side. My life has been a confluence of strange events. Events often not in my control like hearing in the space of a couple of very harmless minutes that I have got MS. Oh MS I respond calmly and so does MD (my darling) as if everything were ok. It’s not ok, it’s far from ok but as it’s all happening so very calmly and no one is getting too visibly upset it could all be normal. Thank you doctor we both say as we leave, like its been a pleasant visit and he has just given us some good news.

But it’s not normal it’s far from fucking normal. Things can never be normal again, everything has been changed forever by the words” see those white spots well those are lesions that means you have ms” Oh right and really were all that we could say and that seemed the correct thing to say, after all when did any of us learn the right things to say in those sorts of moments. The etiquette of how to behave when getting a bad diagnosis. Or EBGBD for short.

After a week and abit I am happy that I know. I now know more than most people who vaguely worry how they will die, I’ll need not worry about that again now I know. Mind you like most I would have preferred not to know to have remained blissfully ignorant till dead or otherwise. But I do know. I tried to forget I knew, it did not work. Then I tried to bury my head in sand but could not walk well enough or far enough to get to any sand. And then I pretended I was ok just overwhelmed with grief and tried to hide behind my tears of grief but that got too wet and too tiring. And to cap it off I scared myself shitless when I caught sight of myself in the mirror. The other clue to being way down suddenly preferred the cool dark room to the sunny kitchen. This is when I thought come on get the information find out, and find out now.

Strange to suddenly not want to know after always wanting and needing to know everything.
Realising I was trying to do everything I could not to get information about the ms made me go look for it. Imagine me afraid of knowing. But yes in this instance I still would rather not know and to stay that way but the ms is here now and won’t listen to my telling it to be a good fellow and fuck off again. Read today in the article about Abigail Witchell going off to Lourdes and how her family hopes for a miracle, apparently the last miracle was an ms sufferer who got cured.

Wonder if they could do a miracle for me? Surely I qualify? Hope they are good enough to do the miracle without me going there. That would be brilliant the Lourdes miracle online or even better via wifi. Surf to Lourdes online and ask for a miracle. And replacing Big Brother in due course on televisions round the globe will be miracles online.

Seems that books by people with Ms are popular with publishers at the moment. Maybe I should write one too, must find a new angle perhaps humour. MD keeps me laughing with his new MS jokes with one-liners like “lots of sex now would give you a boost, make you feel good that in your condition you can still satisfy your man!” Or another time he was very helpfully when the tingling got too bad in my hands and suggested he had a handy gadget that could be useful!

Joking aside not sleeping too well through the night not getting into bad spasm territory yet but feel muscles knotting up and feet pointing in several directions at once causing strain and making me twist and turn in my sleep and eventually all the turning around wakes me up as well as the pain in my knees and back. I lie there quiet hoping to pretend to myself that I am not awake that way I will fall asleep and not lay awake thinking about it all. Better to sleep. Long deep dreamless sleep waking up and feeling like some version of Rip van Winkle, there it is all out here but I am in here. The world out there is known but becoming distant must keep feeling a lively connection to it all feel the optimism that is there in the life out there. Feel the connection and sustain it.

Up and down, more up than down but when a down moment comes it hits harder. Feel in one way everything is over, it’s not just one phase is over and another has started. This is post diagnosis and that other life was before. It really does feel very before and after. But that it’s all over that’s too dramatic. Just feels like it. Just feels like it. Tonight noticing how much worse I feel since I know what it is, its not that I am acting the part but more that I am no longer trying to gloss over it all and hide things from myself or MD because I could not explain what was happening. Now I know that when something weird happens it’s not my imagination but real. Like my leg always turning in one direction or my muscle cramps which I now identify as spasms. Or when I noticed I was having problems during eating. Problems with keeping upright and keeping my hand working in order to get the food to my mouth. I suddenly caught myself thinking must hide that could get me put away in a care home. Bloody hell!

The worse day after hearing the news that I have MS scan was on Wednesday 9 august, we were both waiting to hear the results of the MRI scan that was done on 27 July. Got very tense and nervous and was really scared did not know how scared until about two hours before when MD said to me you look really scared how are you doing? At this point I just collapsed in tears realising that my vain efforts to keep a cool and calm facade had not worked. Halfway through a huge crying jag I had to really slow down the tears as I was worried that otherwise I would not make it to the appointment. As it was it would have made no difference as the good doctor had no information for us as the scans did not contain all the information he needed. He was cross! All we saw and heard for about the first 5 minutes in his room was the doctor angrily writing away at one side of the desk while we waited politely until he would finish and explain things to us. After what seemed like ages looking at a bald-headed man writing angrily he finally looked up and apologised several times for the inconvenience as I would have to go through the procedure again. Then he noted my telephone number and asked me to make an appointment to see him after the new scan, the appointment for the scan would be phoned through asap. My next appointment with him would be on 21 September, 6 weeks waiting but hopefully then we will finally be given some information and maybe some support too.

The 7 days after this anti climax of an appointment finally someone phoned through the date of the next scan on 28 august. Felt very down in the days after Wednesday 9 august took me awhile to realise that it was the backlash from the failed appointment as we still had no news, no information in fact nothing from the neurologist. Feel very let down. Imagine if I were on my own how would things be then? Then you would be told the diagnosis like we were and return home to deal with it alone. Like we have but at least we have each other.

There is a lot to organise such as getting the priority housing status in order to be eligible to move to a ground floor flat suitable for a wheelchair, this involves an appointment to be vetted by and classified by the relevant body for eligibility. The person that came was very pleasant but never the less there it is you have to let people come in to your home and ask you all sorts of questions some very personal in order to comply. Still the appointment happened so now there are applications for a new flat, and a scoot mobile (a golf buggy would be more fun) as well as my own wheelchair being processed. Hope it happens quick I really need to move now as the stairs are becoming quite a problem for me. Once I am finally down I am too tired to move any where else so don’t go out at all often. Since last Monday 15 august I have a wheelchair from Thuiszorg (home help organisation) on loan but have to rely on MD pushing me as my right arm is a bit weaker and the other thing is that where we live every road has either a huge bridge or the road is elevated enough to be a nuisance for me in the chair.

Went out for the first time in ages on Wednesday 14 august, apart from going to the doctor and the fysio I had not been out for 2 weeks! It was also for the first time in the borrowed wheelchair from Thuiszorg. My right arm was too weak for me to operate it myself so MD pushed me and while it was brilliant to be out together it was not the most comfortable ride, its a very basic chair, the seat is horrible you get a numb bum after about 30 minutes and you are so low down its even more difficult to stand up. It does not manoeuvre very well and when we bumped into a drain cover it nearly tipped over and me too! It feels like it could split in half at any moment all in all it’s not nice.

I had a great time screaming in "fear" as I was being pushed at what seemed like top speed by MD. I never need to go to the Efteling or any other amusement park again not with my own fun wheelchair ride!! It serves the purpose of getting me out of the house so its brilliant and I almost love it!!

By the way when I applied for the scoot mobile we were told that Amsterdam city council is very strict these days and if you have a partner who is at home you do not get one but if your partner was out at work you were eligible to apply for one. So their mobility program is not really about keeping people mobile. Then I found out you can not use the mobility bus scheme to get you to work so again how is this keeping people mobile and independent? I was also told that getting a canta, (a disabled car) or some other disabled vehicle was virtually impossible which is even more of a shame as that would really be mobility.

We were actually talking about making our own disabled car and adapting a scoot mobile to look like a dalek from Doctor Who, a brilliant idea. Lots of great ideas also for a TV programs called “Pimp my Crip” and “Pimp my scoot mobile” lots of laughing and joking but also tears that happen suddenly and I can’t stop crying feel so very scared and dreadfully frightened and don’t know what is going to happen next. Just suddenly it looks and feels like it could be really awful. And then in the next moment I can stop crying and laugh again and there is nothing wrong just abit damp and life goes on.

Sleeping has not been too good this past few days in the early hours where before I could relatively easily turn over at this point on to my side this is now a problem which wakes me up. Then I find that I can only stay on one side or the other very briefly and have to flop back on to my back and at this point it becomes difficult to lie flat on the bed and I feel like my back is a bow being pulled tighter. If I lay quiet and breath slowly it goes away and I can in time fall asleep again.

Life for me these days is very slow and indoors, the day starts with me getting out of bed using the hand grips MD has fixed up over the bed. After a slow but immediate shuffle to the toilet and a slow shower using the very ugly white plastic bath chair on wheels also lent from Thuiszorg, I slowly shower and clumsily dry myself and get dressed which takes ages and on a good day I get it all done without too much stress or accidents like my right foot falling out of my hand and landing painfully on my left toe ouch!!! After dressing I usually eat a bowl of cereal and then try to take a half a cup of tea into the front room to the pc so I can read the papers and my e-mails. When MD gets home from work around 14.00 we have a cup of coffee and I smoke a joint, a medicinal joint. I have now got cannabis on prescription from the doctor just need to find out if my health insurance covers it, hope so as it’s very good for the pain in my back and legs and right knee as well as the spasms.

One good thing from all this is friends, good friends, and it’s bloody brilliant to find we have so many friends. Makes me feel good, feel loved and not alone. Good for us both, really good for us just what we need. Also good to be able to confide in friends, give trust and get trust. Saw a good friend yesterday, Anja, who thanked me for letting her know and for treating her like a trusted friend. Until that moment I had not considered that side of it, it was about a week or so after the diagnosis that I felt I had to write cards to friends to let them know what had happened. I found it very hard to do so but once I started to write the first card it went ok.

I am thinking of putting my name down for a brush up Dutch language course, see how that goes, this is being organised by Amsterdam council. And I have put my name down to become involved in a FNV (trade union) work group around issues such as unemployment and ill health and heath insurance. They sent us a folder asking if we wanted to take part so will find out if I would be able to take part. Need to organise myself so I stay active as at the moment I do very little. The grand plan is to go to the fysio 4 x 30 minutes per week, when I can, as well as swimming twice a week as well as once a fortnight with the MS swimming group. Maybe I will put my name down for the MS riding group sounds good fun.

I called to check whether our new sports center/swimming pool het Marnix which has cost millions was accessible for me in a wheelchair and was told no the lift is broken.... and I thought how weird as its just open in July but ok these things happen so when will it work? In a month…. think shit I really need to swim now it’s good for the pain as well as keeping me active and my body healthy.

It’s the best and really the only way for me to keep fit so this is real strange but ok in a month I can swim? And hear no you would better off forgetting about swimming here...I was in shock but gulp and ask so where can I swim where upon the person says I do not know and hangs up on me!

I am in bits at first crying real upset my day is kaput that's it.

Half an hour later I am emailing everyone in local government, council, press, handicapped associations and radio stations. And since have had lots of responses and one article about me and the pool in the local paper and then yesterday got on the radio so feel pretty good.

The director of the sports complex does not seem to be able to manage very well and has let his staff down but that's his problem as all I wanted was to be treated normally and swim, its also a place I used to swim at since 1984 and I had been eagerly awaiting it being reopened.

Not only that but he keeps changing his story also even when it said in the paper that he had spoken to me and asked me to come by to swim to make up he had not contacted me at all and when he did he was pretty arrogant and rude, and very patronising...sort of "poor little handicapped thing type of mentality"

Then he invited me to swim and on the day I could not swim as I did not feel good so phoned him real early at 9 am so he would be able to make other arrangements and was greeted very rudely and with zilch understanding and no alternative suggestions and then he said that he had never invited me to swim in the first place!!

Well I thanked the good man and put the phone down and it rang again and it was the Radio Noord Holland asking if I wanted to come on the show.

And I sure did!

It went very well, I was just myself and told my story and was not argumentative or quarrelsome nor did I interrupt Ton Schraven, the director from the sports complex/pool who was also on the program.

He did his case no good and shot himself in the foot by never answering a question and giving lots of non replies and saying basically it was all a misunderstanding or indeed a series of misunderstanding and the lift had not been working for a micro second during which I phoned and the staff member in another micro second of confusion over the status of the lift told me the wrong information...

And when the interviewer asked very confused so what is it... is the lift working or not the director said its been working for weeks!!!

And then he told us he knew all about MS as he had been a director of care homes for 32 years and when the interviewer was pressing him to reveal whether I was going to get my swim he started umming and ahing about it had all been a misunderstanding and got cut off by the interviewer with the advice to invite me round to swim quickly to make up.

I got the last word and said that I thought it was a shame there had been not just one misunderstanding as the director said but several but looked forward to going round sometime.

I had to stay on the line to make an appointment but he did not want to talk to me and asked if I would call him when I was feeling able to swim, how very understanding he is about people with ms.

As I had already been in touch with the Amsterdam council Sport Consultant, his job is to stimulate people with handicaps to participate in sport and his job is to ensure that all sport complexes/swimming pools are accessible for everyone. And he had said he would organise a tour of het Marnix, so I did not have to phone for an appointment.

I keep laughing to myself when I remember how Ton Schraven tried to prove how sensitive he was by telling us he had been a care home director for 32 years and he knew all there was to know about ms. That’s quite a talent as the medical world is still baffled by ms.

The radio may want me back after I have been to the sport complex next week. I get picked up by the sport consultant at home and then we will get a guided tour of the place and he wants me to pay special attention and to mention anything I notice that I think may be useful or could be improved. He even suggested that if it went well he would invite me along to other projects. So not a bad result for a few emails complaining about lack of access, which has turned out good for me, I have made new contacts and even two new friends also in wheelchairs and also active which is bloody brilliant!

And a good friend thinks she would like her new film project to be about me, filming me going about my daily routine and how its been affected and how I manage, could be wonderful for me and she can film me having a look at a few of the accessibility issues in Amsterdam. It’s quite amazing how bad the access is here in Amsterdam. Of course it’s old but there are plenty of places that have been recently built that do not have good or any access for the disabled or if there is access then the toilets are at the top of the building with no lift access. For example you can go to the café on the top floor of a new shopping mall in town called the Kalvertoren but you can not go to the toilet after a coffee as its too small for wheelchair access so you have to go all the way down in the tiny lift and across the road to V & D, a department store across the road to their toilet. Brilliant! Not very wheelchair friendly. Sadly they do no think of the disabled as customers.

Harry Visser the sports consultant picked my friend, my chair and I up at home. During the car ride he told me that my emails had generated alot of commotion, he had had the office of mayor, Job Cohen phoning him. He also explained that he would like me to try to do everything independently so he could access how accessible the new sports complex really was.

From the first moment it was clear that the complex was not accessible in the true sense of the word. Accessibility had been added on in the form of an extra entrance not planned into the project to make it truly accessible. The ramp by the front entrance is too steep for anybody but the fittest wheelchair users, perhaps the wheelchair rugby club would sail up it but the rest of us will need help right away. After trying to get up the ramp I got no further than three meters so the sports consultant pushed me up the ramp.

At the reception the director and his team greeted us. The director was very nervous and gave us all extremely damp handshakes. We were then treated to a half a plastic cup of water. During the talk the director apologised for the delay in the building works but he did not apologise for the rudeness of his reception staff nor did he give me any flowers or a swimming wrist band for a few free swims or indeed anything to make up for the unfortunate behaviour of his staff.

After this we went on the tour of the pool area, he made it clear that the rest of the complex was not ready. At the reception desk the counter was just too high and the pin machine is placed just out of view for someone in a wheelchair. I was given a wristband that is supposed to activate the electronic entrance as well as the doors, lockers and lift. It did not work at all. Going through the electronic gateways we noticed that of the three only one could be used relatively independently by wheelchairs but it was just not wide enough so its easier to get someone to push you through as your hands don’t quite fit to operate the wheels. The walkway to the lift is very narrow which makes it difficult to turn or manoeuvre. Only one electronic entrance is big enough for wheelchairs

The changing rooms and pools are below street level and only accessible by lift or stairs. With assistance I got in the lift. The wristband activates the lift when it works. First we went to the special invalid entrance. Ton Schraven informed us that when the entrance was ready the wristbands would activate it, which is lovely if you have valid wristband but what if you have not. Maybe a bell by the entrance would be better which can then be monitored and opened by the receptionist.

Noticed that the entrance was quite close to the lift, which had a set of stairs right by it without any warning of the steps. Then we got back into the lift and went down to the changing rooms. There is no room to turn around in the lift so you can only leave the lift backwards which is made more difficult by lack of mirror. In the changing rooms the corridors were too narrow, which made manoeuvring and independent movement practically impossible. Another thing I noticed was how difficult the door handles were to open sitting in a wheelchair.

The designated changing room turned out to be primarily for families with young children. The sports consultant immediately commented that this could not be acceptable for disabled people who he said especially valued their privacy. The next thing we noticed was the fact that the panel you had to pass your wristband over to activate the available locker was much too high up for anyone sitting in a wheelchair to reach safely. Apparently they will revert to a former system.

I dragged myself over to the plastic wheelchair; they only have two plastic wheelchairs, obviously not expecting too many cripples. I then tried to move the chair towards the door to the pool without any luck, the chair is too difficult. Again the wristband activates the door and then you have to somehow get this heavy door to open This fire door to the pool is too heavy for me to open.

When we got into the pool area we noticed that something was happening then realised the floor of the pool was being raised. When it was level with the top I rolled on in the swimming pool’s chair. This in my view is not very independent swimming, as it costs between 5 to 8 minutes for the floor to be brought up or down. What happens if you need to go to the toilet just when you have got into the pool or something else happens and you have to get out of the water real quick. It’s a shame they did not chose a more low-tech approach like a ramp so that everyone could get into the water independently.

We returned via another walkway to the changing room where my wheelchair stood and got back into the lift and headed for the reception area where my wristband again failed to activate the lift or the electronic gateways. I noticed that the other customers also were having problems with their wristbands. The staff seemed to be extremely helpful which is excellent as helpful staff are worth their weight in gold but so is a person’s independence.

After the tour we returned to the cafe area where I noticed that the bar was much too high for me to feel like I was being treated like an equal. There was a brief evaluation of the tour, without any offers of refreshments which was very odd given that the tour took over an hour on an extremely hot day and where surely the good director with all his knowledge of ms would have known that I would need to
eat and drink at regular intervals and especially water intake is important with ms.

The director Ton Schraven then told us that the best thing would be if I could phone before I wanted to come swimming then the security staff would wait for me at the front entrance and escort me down to the changing rooms. Very touching to know that they are so helpful but this is special treatment and I wonder if everyone gets that. Another point is that it’s very difficult to make firm appointments with ms. And on a practical note its very difficult to arrive on time with the mobility bus.

Why were no disabled people and/or organisations involved in the planning stage and why wasn’t accessibility planned in to the project. Great to have good helpful staff but this does not compensate for lack of independence. Surely an extra entrance is just apartheid. I don’t see extra entrances for blind people or Jewish people or people of colour or women.

My conclusion is that this real wasted opportunity to make this sport complex truly accessible. Real shame the disabled organisations are not consulted and even bigger shame that the council employs a sports consultant but does not seem to give the job total support. The sports consultant should be involved with the planning stages of all sport projects.

My other conclusion is that sadly myself and others with a handicap will not be able to swim independently at het Marnix. If it had been built to be accessible then there would have been one entrance for all and everything could have been made just that bit bigger to enable independence.
We did not get to see the toilets and the director, Ton Schraven would not let us see the rest of the sport accomodation. We were briefly in the café and there the bar was too high for wheelchairs.

What a shame Ton Schraven could not show how big he was by apologizing for the despicable behaviour of his receptionist and the rest of the team. Shame too that he never thought to make it good with a small attention or one of the wristbands for free swimming. Very shortsighted indeed, as they would have had good publicity and a happy customer and who knows perhaps some new customers too.

It was also a great pity that the glossy promotional brochure, about the new sports complex, which was distributed door to door in the centre of Amsterdam, did not promote it’s accessibility for the disabled. Another missed opportunity to promote sport for the disabled especially in September the month of sport in the Netherlands. It is therefore no wonder that I seem to be the only person in a wheelchair who wanted to swim at het Marnix But surely I can’t be the only disabled person in a wheelchair in Amsterdam, can I. Bit like the Little Britain program with the only gay in the village!

Of course if you do not promote accessibility and sports facilities for the disabled they will not ask and they will assume that here is nothing out there for them. And the service providers in their turn just assume that there is no demand for such services and therefore do not provide them. And this has to change.

It is a wonderful sports complex with friendly, helpful staff but I prefer independence to being helped.
I want to be enabled not disabled. Maybe they opened too early as one group, the Fibromylagie group of 38 people have already cancelled their slot at the pool as it was too cold and too noisy ( builders) for them to hear their instructor.

Architects need to get a clear brief that all( public) buildings have to be built to be accessible. Accessibility has to be planned into each project not added on later. And it is imperative to involve disabled people and their organisations in the planning stages of such projects. Most importantly politicians need to be aware of these issues, they need to make sure that the disabled are adequately represented in their ranks. Also they need to make sure they are taking up accessibility issues. Although a minority, we, the disabled, are quite a large part of the population and we are not going to go away. No we won’t sit in doors and keep the streets tidy this is our world too!


cile said...

hey, you didn't write new posts?

Toinlicious said...

i loved reading about you. You're awesome. Your fighting spirit is amazing. You made me laugh and cry and hope and wish

i laughed out loud here "I never need to go to the Efteling or any other amusement park again not with my own fun wheelchair ride!! It serves the purpose of getting me out of the house so its brilliant and I almost love it!!"

and i totally get not being able to stop tears sometimes for no reason.

Inspiration, you are

Herrad said...

hi toinlicious,
thanks for reading.