New York No 1 - We Made It There (But It Wasn't Easy)

 

They say if you can make it there, you'll make it anywhere. I won't say New York beat me, but I did start to feel a little like Jack Lemmon in The Out-of-Towners. I was running around in the rain with a soggy piece of paper, writing down everyone's name so I could complain effectively. As I wrote to my mum after 24 hours I was half expecting to end up sleeping under a tree in Central Park and having my shoes stolen in the middle of the night by a man in a cape.

 

I put the pictures of my New York trip on Facebook and enjoyed all of the comments from friends and family, hoping I’d enjoyed my trip and telling me how well I look. We had a great time, me and my fellow MS partner in crime. I dubbed her the Ginger Mare after seeing it on the side of a horse lorry and she called me the Clumsy Pike Hound when I broke my fingers a couple of weeks ago. The trip was amazing and I saw so many things I thought I’d only see in films. The photos tell a story of museum visits, walks in Central Park, visiting a show and eating in great restaurants with plenty of cocktails, but these pictures don’t tell the whole story.

In general the picture of ourselves we present on Facebook is at worst a fabrication and at best a little bit of an edit. I react badly to people who use Facebook as a vent for all their complaints and misery, but maybe those people are just more honest. When they feel like shit they say it, but I rarely do. The most honest New York pictures on there are the ones where my friend shows off her blistered feet from walking on the insides of her heels, which she does to keep her balance. Incidentally I keep my balance from walking on the outsides which plays havoc with my knee and hip joints but you wouldn’t know that from a picture.

MS likes to remind you it exists from time to time. In April I had a sudden relapse where I suddenly fell asleep on the couch and became like a drained battery. I was vaguely aware people were there but they were distant and I couldn’t fully open my eyes to see them. I remember a doctor arriving and lifting my eyelids; I was aware he was there, but couldn’t focus on his features or reply to his questions. Once he dropped my lids again I had no ability to keep them open. I heard the ambulance man say that my pupils were not responding to light and I guessed that must be pretty serious. Gradually over the next few days the overwhelming fatigue lifted and as the IV steroids went in I began to see more clearly. It took a full week for me to return from hospital and longer to be able to stand and walk. This was a big relapse, as opposed to the little ones I was used to having from time to time. It was not surprising considering all the personal upheaval I was going through. I began to think that attempting all this training, alongside the divorce and house move was hard enough without throwing a trip to New York into the bargain. I expected to move in June and have a while to settle before going away but as it was there was only a fortnight before I was off on my travels.

Cancelling the holiday or at least postponing it would have been the sensible option, but this trip stood out to me like a beacon in a wasteland. If I let it go, I felt without something to aim for or look forward to. Just a summer getting the house straight and catching up on college reading. I felt it would be a definitive break from the norm. Having moved into a village that is literally a dead end means I have all the peace and quiet I could crave, so more of the same would not feel like a holiday. I needed to do something bold that would be the highlight of my summer and be my fortieth birthday treat to myself. It was a complete contrast to my ordinary day to day life.

In New York the noise starts early. I think I heard the first car horn at around 7am and then it continued all through the day, at varying decibels. There seems to be an unspoken code in the use of the car horn that was lost on me. Even police cars and ambulances don’t stick to one type of siren but alternate between them wildly. Added to that is the roar and rumble of the subway, planes overhead and the constant traffic. Then there is the shouting. I have never seen or heard so much shouting in public places. The smallest infraction seems to illicit hand signals and at one point a very audible ‘fuck you’ when bumped into by a jogger running across the pedestrian walkway. Everyone does everything on the run – people sleep in the park, on the steps of the public library and people make phone calls while walking and running between meetings and they often also descend into insults and shouting! It is exhilarating, refreshing and full of inspiration. People in New York simply do not notice you because you don’t exist. In the park there were people randomly doing yoga and tai chi by themselves and no one cared. There were women doing a boot camp training programme right next to a man painting the lake in front of him. I remember Billy Connolly once doing a routine about speed walkers and how ridiculous they look; he claimed it would never have originated in Glasgow where if someone were walking like that in the street they would soon be followed by a line of kids, shouting, pointing and taking the piss. It felt a little like that – there were people seriously doing things in public that would have been ridiculed here. Instead of finding that a charming English idiosyncrasy that keeps us all grounded, the thought made me a little sad. I felt an acceptance and tolerance there that I’d never seen in England. It could have just been the experience of being outside my own world and on holiday, but I didn’t feel like anyone gave a damn what I was doing – whether I walked with a stick or not, or whether I was dressed a bit weird (I do like to do that occasionally).

In some ways I guess it was the archetypal New York holiday, with lots of eating, drinking cocktails, going shopping and visiting the tourist attractions. On paper it looks like a huge adventure where we saw all the sights, met some interesting people, saw a great show and ate a lot, but the toll it took on my MS was invisible as usual. It was a feast for the eyes and the soul, but disturbed the body quite a lot. The arrival did not bode well when we were told we had no booking at the hotel we'd chosen; apparently we booked for 2014 not 2013. They let us have a room/cupboard for the night but neither of us slept well worrying about how we would handle finding a new hotel and organising our baggage the next day. Luckily for us it was the hotel's mistake not ours, so we were moved to a nicer hotel, with a balcony room and free wine and chocolates. Incidentally this story was a great one to tell in restaurants and delis because people were so appalled they generally offered us something free! We didn't use the advantage; well, not much anyway! The heat was unbelievable, thankfully we missed the temperatures close to 100F but we did see temperatures in the high eighties and this plays havoc with the nervous system. My fatigue was awful, leg spasm and pain increased and I would get sudden bouts of feeling like my chest was being squeezed (the MS hug apparently - didn't feel very friendly). To pace ourselves we would have a late breakfast and enjoy the hotel's air conditioning. Then we would venture to do one thing per day, or maybe two with a good rest break. We took our breaks under trees in Central Park or Madison Square Park. We drank plenty of water and even returned to the hotel for a lie down when necessary. Holidays with MS do require plenty of money - we needed to take cabs for longer distances, because the subway is not the most accessible system and buses were like ovens on wheels. I was very aware that I had started to take more painkillers and that each night I was fast asleep as soon as my head hit the pillow.

These are the things people don't see and having to explain the problem was a daily occurrence. I became a very haughty woman at the Empire State Building when we were sold expensive tickets we could not use because of our disability. 'Forgive me ma'am,' the manager said ' but I would not have known you had MS'. It seems that the image of someone in a wheelchair persists as the visible representation of our disease. Explaining why we couldn't stand in lines for long periods was difficult and we had to keep flashing our disabled railcards to show we were genuine. Luckily my friend's physiotherapist was well aware of this issue with MS patients and advised us to take a crutch instead of a folding stick because it was a better 'visual cue'. She was right. The crutch got us through the airports in VIP style and more room on the plane for free. It seems crazy I have to carry something I don't necessarily need to get the help I require, but actually it was easier than long winded explanations and constant misunderstandings. Our weirdest encounter was at the airport coming home where the lady checking us in with Virgin Atlantic said 'what have you done?' when looking at my crutch. 'I haven't done anything, I use it from time to time because I have MS', I replied. 'How long for?' she asked. 'Fifteen years' I said, looking at my friend for confirmation. The woman pulled a face as if this was the most terrible fate she could think of. 'I'm so sorry' she said to my friend. So we gave her our stock reply 'Don't apologise; you didn't give us it'. She seemed confused by this and very distressed by our situation and we were very glad to be transferred then to a more upbeat rep who gave us free extra leg room and didn't bat an eyelid about two ladies with matching crutches.

This confusion seemed to bleed into a lot of the interactions we had over there. Our missing room booking was stressful and inconvenient, but the next day sat reading on our balcony we were able to forget the inconvenience and feel we'd landed on our feet. When my friend's iPhone was stolen in the public library the hotel staff seemed to feel it was a disaster they were personally responsible for. We told them, 'it is what it is' and once the insurance and reporting was sorted out we put it behind us and went to the museum followed by a lovely dinner at the Russian Tea Room. These problems were not tragedies; they were just some of life's little glitches and inconveniences. Letting one or two experiences overshadow the whole holiday would have been wasteful and self-defeating. We got through it okay and although I will be paying for my adventures in fatigue for the next week or so, it was all worth it.