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 40th 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
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