New York 2 - The Return

This is the story of how two women with Multiple Sclerosis managed to spend a week in New York. New York is like standing in a fairy tale for me, because I have listened to all the songs, read every book and watched all those film and TV series where New York is as much a character as the people. I am a huge Woody Allen fan thanks to my mum so watching films like Manhattan and Play it Again Sam inspired me to love this, probably very elite, representation of the city where people had wonderful apartments filled with books and met each other at all of the New York landmarks. I wanted to see Central Park where Woody Allen apparently waved to Mia Farrow in her own apartment across the way. I wanted to see the huge Christmas tree at Rockerfeller Plaza where there was an outdoor skating rink. I wanted to see Greenwich Village where those six ‘Friends’ hung out, drank coffee and ate pizza. I wanted to go to Deli’s like the one in that scene in my favourite film of all time ‘When Harry met Sally’. I also wanted to go to a Russian restaurant like the one in Sex and the City where Carrie goes for her first date with Aleksander Petrovsky and he introduces her to Russian tea sweetened by black cherries. I wanted to see the fountains where Cher meets Nick Cage outside the Metropolitan Opera in Moonstruck. Every week I watched Seinfeld, Law and Order, CSI: NY and imagined one day seeing the New York skyline all lit up at night. For years I never imagined I’d go, especially once the MS came into my life. I thought I’d never have the money and having spent the first year after diagnosis in and out of hospital three long times I couldn’t imagine anyone would employ me. In fact it was the loss of my husband that left me more financially secure and able to start thinking about travel; in order to remember him and let him know I got there both times I have lit him a candle in St. Patrick’s Cathedral. I was 37 years old before I even applied for a passport, way behind most of my peers who had been travelling abroad at school even. It says something about my love affair with New York that it was the first place I wanted to go to and when the opportunity came up again I was all for it.

So, how do two MSers get to New York? I guess the best answer is carefully and with a lot of planning. We did make the decision rather quickly. We had been planning on a trip for my 40^th birthday anyway; a weekend in Paris and I was expecting to go to Venice and Florence on the Orient Express with my husband in the October. I had never got round to booking, although I had been saving money for a little while. Then when the marriage suddenly fell apart in the September I realised it was not going to happen. I had found it hard to think about alternatives. I certainly didn’t want to replicate the trip this early after the break up because it would have felt weird at that point to go somewhere so romantic with a friend. We were still thinking about Paris though or maybe Venice in Carnival the year after. Then we saw that Monkey: Journey to the West was on for a week at Lincoln Center in New York. My friend and I loved the opera when we saw it a few years ago in London. I am a huge Damon Albarn fan and think he’s a musical genius; over the years I have seen Blur, Gorillaz, Monkey and his latest opera Dr.Dee. Combined with the animation of Jamie Hewlett, acrobatics, martial arts and dance Monkey is like nothing else I’ve ever seen. The thought of seeing this in New York with the great food and atmosphere, all of those galleries and museums I couldn’t resist and we were booked into The Library Hotel within 24 hours. The hotel was a boutique hotel with a different subject on each floor; as soon as we saw their logo, a monkey in spectacles reading a book, we knew it would be our sort of place. Then the real organising began of how we would comfortably get to the airport, by train or by car, and if by train how did we get from King’s Cross to Heathrow with that entire luggage. I am rubbish with details and need nagging to get all this sort of planning done. Luckily, my friend is good at this sort of thing and we gradually had a train to King’s Cross with disabled assistance, a car to Heathrow and then assistance at Heathrow. Advised by our physiotherapist to take a crutch each as a ‘visual cue’ I did not want to. I hate having to use the bloody things anyway so really balked at the idea of taking one when I didn’t feel I needed it. Yet, I realised not far in that I really did need it. People do not understand an invisible disability and the change in people’s attitudes towards us was amazing. There were no questioning looks and no hesitation in offering assistance; one man even taking up our luggage at Peterborough and putting it all on the train, even though he had his own train to catch. There was one young man, he was reading the True Blood series so I should have known he was ok, who got up and carried our luggage off the train to meet our assistance when it wasn’t even his stop.

However, there is nothing more scary then travelling for 14 hours to reach a wet 87F New York City at 10.30pm and being told you have no hotel room. The hotel said we had made a mistake with the booking and at first I didn’t dispute this, because I have been struggling with cognitive problems for some time now. There are those studies where a number cruncher works out how much time per year the average person spends in bed or sits on the toilet. I could beat both of these totals put together with the cumulative amount of time I spend hovering in doorways, wondering why I came up here in the first place and what on earth I am looking for. My fellow MS friends are now getting quite used to 3am texts that say things like ‘I remembered the name of that actor. It was…’ or even ‘I left an entire bag of groceries in your kitchen’. I can even be woken suddenly by that answer I missed on Pointless that was just on the tip of my tongue but would never come. It has been called MS fog or Fibro fog for those with fibromyalgia, but I also blame the myriad medications I take to shut off pain signals, particularly the phenytoin infusions which leave me unsure of who I am for 24 hours! It seemed to use entirely plausible that we’d cocked up in this way, but as it turned out it wasn’t us at all. It occurred to us in the middle of the night that if our booking had been made for 2014 as they said, why had they been looking at it at all in 2013? We checked it out on the trusty iPhone and we were right. There is nothing like a contrite New Yorker in the service industry. They go all out to correct mistakes and once it had been pointed out they did rectify the mistake and then some; a balcony bedroom in a different hotel, with wine and chocolates, a free night’s accommodation and an apology in writing. We were perfectly happy, but the hotel staff was mortified, and made it their business to make sure we were happy and satisfied with everything about their city.

So, the first obstacle is simply getting around, especially in the heat of summer and there were occasions where we both pushed our pain and fatigue limits by trying to walk too far. However, once I’d got the knack of securing a cab we were sorted. I was chief taxi grabber by the end of the week, and it was the only practical option despite the financial outlay. In the heat we discounted the subway immediately because it was stuffy and airless, plus underground trains give me terrible motion sickness (never a good look). Walking wasn’t such a pain, because we could set our own pace and everywhere there were little churches or gardens we could wander off and explore. It gave us opportunities to sit somewhere cool and shady and rest our legs for a while. Of course there were days when we went  a bit too far, especially in the large galleries or museums where the wonder of what I was seeing often meant we stood too long or didn’t take meds on time. There was always a park to sit down in as well – Central Park is great for shady areas to sit and read for a while and there were plenty of vendors with ice cold water to make things more comfortable. Madison Square Park was great for people watching and checking out the dog park while we missed our own pooches. We also made sure that at some point in the day we stopped to eat properly and always took advantage of the great breakfast in the hotel so we were set up for the day. Planning breaks into the day became something we did naturally so we barely noticed. Then when too tired or when we knew that it was just plain stupid to attempt the distance we jumped in a cab and not only rested our legs, but got a blast of much needed air conditioning!

Pacing also applied to when we would eat during the day and also just how long those days were. We were careful about exactly how long we were up and out all week and there were only a couple of days where I thought we’d stretched it. Knowing our own fatigue levels we knew that long days and nights out on the town were not going to be the order of the day, nor was drinking huge amounts of alcohol. Staying at the hotel for breakfast meant we started the day gently, but we also never stayed out too late either. If we knew we were going to be out at night, we would make a pit stop back to the hotel for a sleep in the afternoon. We had to accept that we were not going to see it all and there were some things we were just going to have to give up on because of the length of queues and standing time. We did eat out on some nights, including the beautiful Russian Tea Room with its smoky tea sweetened with black cherries, but tried to get in around 10 ‘clock. Although we knew we couldn’t drink much we did try some cocktails here and there, but were sensible enough to know that one or two was the limit. After too many Cosmonauts at the Russian Tea Room I managed to send the cab driver to the initial hotel we’d stayed in instead of the new one; we were giggling like loons but he let us know just how pissed off he was by not braking for corners! We had also tried alcohol on the plane over which was a stupid decision. The mix of alcohol and medication led to me eating my in-flight ‘meal’ in the manner of a T-Rex with his teeny tiny arms. We then made the observation it would be awful to be married to a T-Rex because you would always be the one who changed the quilt cover. We decided that the only possible match would be a huge gibbon. We proceeded to cry with laughter and in retrospect it’s a wonder they let us in the country.

One of the big decisions we made early on was the need for assistance and this was a huge one for me because I hate having assistance. I am very independent and hate anyone else doing anything for me. I often don’t admit when I’m feeling ill, or when I’m struggling with life and need support. I like to just suck it up and do it all myself. I have realised in the last year that this has become a self-defeating attitude and have been taking steps to change. I will ask for help more and say when I need some company instead of being miserable alone. This openness has been difficult for me, but has had its rewards; other people are more open with me and find me more approachable instead of ‘scarily efficient’ as I was once called at work. My need for independence has looked like aloofness or being stand-offish and that was never my intention. Yet, asking for physical help was still a big step for me. I would probably have struggled and been fatigued, but once persuaded I was looking forward to the idea of someone else doing the hard work. Relapsing-remitting MS is weird because sometimes you look like you don’t need help and sometimes you don’t feel like you do, but the knock-on effect of struggling is days of pain and fatigue which is the last thing you need on holiday. I knew this, yet getting into a wheelchair to conserve energy still felt like an alien concept. There is something deep within me that says ‘if you can walk, you should walk’. Yet, I remembered other journeys where I had walked and then felt sick with pain while queuing at customs. It was the sensible decision but gave me a completely different perspective on the world around me. There is a certain amount of independence that you give up – sometimes I felt like a parcel being delivered from one place to the next without any concept that I was a person. Ground staff at Heathrow and JFK were brilliant, but at Newark we were treated like luggage, despite trying to make conversation with staff who were helping us we were largely ignored while they carried on their own conversations and even phone calls while wheeling us around. I couldn’t decide to just take a browse in duty free or wander off to the loo when I felt like it because I had to ask. The need for help reasserted itself when we visited the Empire State Building and were told ‘you don’t look like anything is wrong with you ma’am’ and we educated them in the concept that not all disabilities are visible (along with a few other choice words from me in my best ‘haughty Englishwoman’ voice). I am glad we took help because it made the holiday easier and stopped either of us developing problems while we were out there. Of course we’re paying for our shenanigans now we’re back home, but we did it and we had the greatest time.

So, I did see Greenwich Village where those Friends hung out and took photos of the apartments, little churches, restaurants and boutique shops. We went to Lincoln Center for Monkey: Journey to the West and I got to stand by the fountain from Moonstruck and wait for the it to shoot up into the night sky. I had my tea (and one too many cocktails) at the Russian Tea Room and went to Central Park and explored all the different landmarks I remembered so well from my films. Yet, we saw things that we loved that weren't from the list too. We got a free breakfast at the Brooklyn Diner and a lovely hug from the owner, because he lost our order. We explored little shops with some of the most beautiful window displays I have ever seen. We sat people watching in parks and got to see how New Yorkers use their city to walk their dogs, to do Tai Chi in the open air, to sleep under a tree as the fierce mid afternoon sun got a little too hot. We experienced shopping on a Saturday

 

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.