50 Shades of Impotence

When I was 10 years old, I boarded a jet on my way to Nepal by myself.  My mother, watching from the window of the terminal, always tells people I never looked back.  What I did, in fact, was find my seat by the window, open my copy of 'The Three Musketeers', one of my favourite books and begin to read, making certain that there would be NO tears to obscure my vision.

On the way to Hawaii, the air hostess gave me a glass of champagne, despite the fact that I was very much underage.  I did not have any 'babysitter', though.  I went through customs alone at Honolulu and then met my relations, a family I really did not know at all.

And so it went... I went alone to England to University at an age when most children still had at least three more years of school to endure.  I tried not to look back.  I wanted to be a warrior woman, an intrepid adventurer in life.

Well, that did not work out entirely but the pattern endured.   Years later, after feeling I was being smothered in San Diego, dealing with a great-aunt who had advanced Alzheimer's disease and finally making it clear that they needed a real professional, I took a plane to New York with three cats, no job and no money.  I had obtained a copy of the 'Village Voice' and rented a room in a flat, sight unseen.  The girl who had the lease told me that the flat was in Manhattan... I barely made the flight and did not know whether or not the cats had made it until I reached La Guardia..  Changing planes somewhere in Texas, all I could discover was that there WERE some animals in the hold.  Those were the days when pets were not allowed to travel with their human companions but were placed in the hold with the bags... rather cruel, but both they and I survived and were reunited at the airport in New York.

When I found a taxi and gave the address, telling the guy it was located in Manhatten, the driver, with a heavy Brooklyn accent replied, 'Lady, that's in BROOKLYN.'  Of course he was right and the location had been misrepresented by the Italian-American girl who had rented the flat to me.  Two months later, she moved out and rented the entire flat, over my head, to some one else.  I found myself in a day homeless, out on the street with three cats in their carriers!

And yet, somehow I found a place to stay, ironically with another taxi driver who, seeing me on a pay phone attempting to find shelter for the night, recognised me.  He had driven me on Hallowe'en to Manhattan a month previously and had been highly impressed, evidently with my dominatrix outfit!  When he discovered my plight, he offered me a spare room in hsi flat in Queen's.  By this time, I had a job but in those days, it was virtually impossible to find a hotel that would accept three cats, however purebred and well-bred, as guests.

I could recount a thousand tales of my life, of situations that were insecure or dangerous, but that I managed to escape or overcome, always ultimately landing on my feet.  It was partly because I saw it all as a grand adventure.  Whether meeting the notorious Jackie O at a party or accompanying a very unstable but close friend who was going through terrible withdrawal symptoms to a tenement in Bedford-Stuyvesant where he went to 'score' some smack, I saw it all as an ADVENTURE, as grist for the creative mill ... and if something truly awful occurred, if my heart were broken or I were forced to deal with loss of any kind, however terrible the pain, I tried to convince myself that I would emerge from the other side of the darkness enriched somehow with life experience.

For you see, as a young girl, I was placed in a special programme for so-called 'gifted students' where a Creative Writing course was created just for me.  My teacher, a rather unsuccssful but brilliant poet told me, 'You are extremely talented and have a superb knowledge of the English language but you lack the most essential foundation for any writer which is 'EXPERIENCE'.  Go out and get some of that and then perhaps you can be a real writer!'

At the same time, my Mother beat it into my head that no one ever could be a great Artist without SUFFERING.  Indeed, according to her, one had to suffer more than Our Lord on the Cross to become anything worthwhile in terms of ART...

The combination of these two maxims almost killed me, literally, more than once, but I survived and continued to have both extraordinary life experiences and extraordinary amounts of suffering, both spiritual, emotional and physical, until gradually, in the past few years, with increasing physical disability, my life and Life basically ground to a half.

Severe chronic pain is the worst enemy I ever have enoountered.  It is a constant companion, jealous and greedy.  It works against everything that is positive or exciting in life.  For a long time, I fought it and tried to continue to have adventures and experiences but it finally cornered me.  Bent over double, unable to stand without support on either leg, experiencing excruciating pain whether standing, walking, sitting or assuming a quasi-prostrate position in bed (I no longer can lay flat at all, but am forced to sit... the last straw in a way, because prior to this, the closest to peace I ever had was when I was in bed)... well, to put it bluntly, the quality of my life became less and less viable.

Finally, they are going to operate in June and then again, if recovery from that procedure is good.  It will not solve all the problems or even rid me of pain completely but it may help me to walk again like a proper human being.

At this point, each day is a nightmare and I literally count the days wondering if I will make it to June.

A few months ago, one of my very best friends from my New York days told me he would be coming to New York and I told him I would come to the City to see him on 25 April.  It would have been a difficult trip even at that point in time.  By 1 April, though, I seriously doubted whether or not I could make the trip at all.

It involves two hours by coach from here.    The trip would be undertaken alone.  A breeze back in the old days when, after moving to Pennsyvlania, I still visited my friends in the City twice weekly if possible.  Now though, when a trip up the stairs to my bedroom is a huge undertaking, I almost despaired.  I kept telling my friend that I would manage it somehow and I tried to convince myself that I would, but a part of me despaired.

Yesterday was D-Day.  I barely sleep in any case with the pain, but I set my alarm for 5.00 a.m. in order to feed the cats before the trip.  I sat with Cupid on a chair in their Hall of Mirrors chamber and the tears ran down my cheeks.  I held him for about half an hour, crying while he licked my face as he is wont to do as he feels he is in charge of my grooming.... but I think he knew how miserable I felt as well.

When I went upstairs again, I was determined to make the trip but wondered how I would manage it.

This is a very long introduction to what became quite an adventure and I am writing it not for myself but for other disabled individuals as well.  It really became a series of misadventures, but somehow they were overcome and I went to Manhattan and returned home again.  Yes, today is worse than usual in terms of pain, as is any day when I have exerted myself more than usual, but for once, if was for something worthwhile.

I triumphed over this awful physical state of impotence temporarily.  I saw LIFE again, even if my experience of it was less than it would have been if I had been able to walk and I saw my dear friend...  last year, one of my closest childhood friends died of cancer.  I never had a chance to say goodbye to him, among other things.  I did not even know of his condition.  I do not want that to happen again. Friendship is such a vital part of life.  I don't want any opportunity to see a good friend ever to pass me by again.

One reason I am writing about this trip publically is to write about the way I was treated as a disabled person.  The coach service was amazing.  Having travelled every week to New York for many years on the coach, I knew how crowded it would be.  Sometimes, during the rush hours, every seat would be taken.  I was given two seats at the front of the coach for the trip to the city.  I therefore was able to stretch out my legs when the pain of being seated became intolerable.  Some one carried my bag onto the coach so that I could hoist myself up the steps using both hands.  I did not have to worry about walking down the corridor because I was given the front seat.

I had stressed the need to have my friend meet me at the Port Authority.  I no longer have tha ability, even with the walker, to traverse more than a few yards at any given time.  It has a little seat and I knew it would be necessary for him to push me part of the way through the concourse to 8th Avenue.

He really hates Port Authority.  Many people do.  In fact, many of them probably haven't set foot in the place more than once or twice.  Unfortunately, there is no train service to the place in Pennsylvania where I live.  One either has to drive or take a coach if one wishes to visit New York.  In fact, I was rather horrified initially to discover this.  I was not fond of coach trips.  In Europe, I never took them.  I took trains, whether underground or overground.

My friend kept his promise and met me at the gate.  Unfortunately, the business of pushing me in the walker proved to be extremely difficult.  The damned thing kept listing to the left.  I finally suggested that we try to find a wheelchair service.  We were directed to a 'house phone' where dialling 54 would connect one with such a service.  About ten minutes later, a man appeared with a very large wheelchair.

He was the nicest man imaginable.  He refused a tip in fact at the end of the journey, taking us directly to the front of the taxi queue where we were placed immediately in a car in front of every one else.  A part of me did not like the idea of 'jumping the queue' but in all honesty, it would have been very painful to be forced to inch my way forward, enduring another half hour of waiting...

We went to his hotel first.  I needed a bit of a rest and he told me that they served fabulous coffee with croissants.  The Hotel was the 'Library Hotel', a most interesting place.  Not far from the wonderful New York Public Library.  There are brass plaques set into the pavement along the street in front of the hotel, all the way to the actual Library I am told, each with a quotation from a famous writer.

it was on this pavement outside the hotel where the first midadventure occurred, however.  Taking the walker from the boot of the taxi, one of the rear wheels actually detached itself and rolled forlornly into the gutter.

Upon investigation, a bolt was discovered to be missing.  MISSING!  How could this have happened?  Well, while I was travelling in the very wide wheelchair, my friend was carrying or pushing the walker.  He does not have much experience with these and the bolt must have come loose and escaped somewhere in the concourse.  He did not notice it.  It was NOT in the boot of the taxi nor anywhere on the pavement outside the hotel.

I do not think my friend realised what an utter catastrophe this was at first but I had to make it very clear that I could not go anywhere without the walker... the only way I could have gone anywhere was if I had a bearer who would actually CARRY me.  This obviously is not a viable option in the 21st century... there are no sedan chairs for people like me.  The damned thing had to be fixed or replaced.

It was here that the Library Hotel proved itself.  I was able to limp to the lift with a three-wheeled walker, very very slowly and there was a chap with a bucket and mop in the lift with us.  I asked him if he knew of any one who could help with the walker's repair.  I think my friend was a little upset with me for engaging in this conversation with the first person I encountered but it was a good instinct on my part.  The guy told me that the 'engineer' for the hotel could fix it and that he could be sent to the room.

Lo and behold, the Engineers (there were TWO of them) appeared and proceeded to engage in a rather lengthy and complicated process of repair.  Although they had a cart laden with supplies and tools of various sorts, they determined that they did not have the right size or type of bolt.  One of them then went to a local shop to fetch the right bolt... in the end, after about an hour, the walker was fixed and I was given an extra bolt in case it ever happened again.  They were not entirely happy with the repair but said they had done all that they could to try to prevent the bit from being 'stripped'.  In other words, they really made an effort!  It is not the best or most expensive walker in the world but I do need it and their efforts were impressive.

Our day was 'back on track'.  After they left, I said I was rather surprised to find that a hotel actually had a team of engineers on board.  My friend responded, 'You know, they used to call them 'janitors'!  He was quite right, of course.

Once the 'engineers' had performed their miracle, for it was a sort of miracle in the circumstances, we were free to move forward.  We had planned to visit a dealer in bronze medals.  There had been correspondence with the man, and he supposedly knew that we were planning to visit him on that specific day, but when we arrived at the shop, it was shut with a notice on the door to the effect that it was CLOSED.  Very disappointing frankly.  If I had known that the shop would have been shut, I would have chosen an outing to one of my favourite museums instead... but the man has a reputation for being eccentric.  The shop is what some might call a 'junk shop' really... the windows were stuffed with odds and ends, from skulls to crystal balls to a variety of bronze medals and various other commemoratives.  It is the sort of shop I absolutely adore, where I always would be able to find a treasure.  Indeed, dual portraits of MY Emperor and the awful Josephine, framed in mother-of-pearl, graced one of the upper shelves in the window and the price was very reasonable, I thought... not that it signified.  I wouldn't have bought it even if I had the money for I despise Josephine and always have.  It would go against the grain somehow to break the frames in half, jettisoning the awful woman in favour of having Napoleon to myself.  He evidently has quite a lot of Napoleonic stuff though.  Pity, pity, pity... well, I shall have to return when and if I am able to walk.  I shan't make another trip like this until then.  The price, as I knew it would be, was very high.  My pain levels today are through the proverbial roof.'

After that disappointment, we looked for a place to eat.  Fortuitously, the shop was situated in a section of mid-town that is filled with Korean restaurants.  There are no Korean restaurants where I live although, somewhat ironically, the many Japanese restaurants here are all owned and managed by Koreans.  I always have loved bulgogi.  I am very much a red meat sort of person and good bulgogi is first and foremost good beef.

I went through a phase of watching a lot of Korean films and television series, one of which took place in the presidential palace and involved a great deal of cooking.  Its title was Jinjja Jinjja Jong-a-hae or 'I really really like you.'  It was kind of a typical soap opera, apart from the amazing cooking.  Korean cuisine is extremely sophisticated, especially at the presidential or royal level.  Hundreds of side dishes grace every meal and they are visually stunning as well as exquisitely prepared.

Our lunch reminded me a little of Jin-jja Jin-jja Jong-a-hae.  We were surrounded by tiny plates and bowls containing beautiful little pickles and vegetables, every one of which had its own unique spices, flavours and even texture.  The bulgogi was cooked at the table and was tossed with glass noodles, another favourite of mine.

The restaurant where we ate was not our first choice.  Unfortunately, the first restaurant proved to be inaccessible to me in my current crippled state.  One had to sit on the floor, with ones legs in a sort of underground cellar beneath the table.  There was no way I could have negotiated my poor legs into that position at this point and they were quite clear that they could not allow anything else.

It was one of the most elegant Korean restaurants I ever have visited, beautifully appointed and very traditional.  I hope to return someday, if my condition improves.  Meanwhile, though, they recommended a place named 'Miss Korea'.

I confess that I found the name rather off-putting, too trendy or kitschy even for my taste.  Nonetheless, when my friend tried to persuade me not to hobble the distance, to settle for something closer, I refused.  I had an instinct that whatever place had been recommended really might be special... and it was!

The atmosphere was not terribly elegant and the music was less than stellar, being some sort of generic popular American radio offering,  but the food was fantastic.

Why am I writing about all of this?  It really may not be of any interest except for one thing:  I did it.  I did it when I thought it would be impossible.  I cannot make it up and down the stairs sometimes from my room to the kitchen, cannot leave the house even to see a favourite flower in the garden most days.  I cannot stand for more than a few minutes, cannot sit for more than a brief interval without experiencing extreme pain and certainly did not think I could weather a two-hour coach trip, let alone go through that TWICE in the same day.   And yet I did.  The Will can be extraordinary.  I made a promise to myself that I would grit my teeth and survive the trip, that I somehow would transcend my physical reality to be fairly decent company and have a good time with a very dear friend.  And I did.

What did that do for me?  Well, for a start, it has given me hope at a time in my life where everything was spiralling downward into total blackness and despair.  I wanted to be reminded of what life could be like, even if I have almost no life at the moment.  I wanted to be reminded that there still was a reason to keep struggling on, day by day, night by night, through the endless, unremitting agony of it all.  I did want to see my friend very badly because too many good friends have died in the past few years without me having had any opportunity to see them again, but beyond that, I wanted to prove to myself that there still was a world out there that I wanted to explore and perhaps could explore again...

I am writing this partly because i want to share my experience of taking a trip like this by myself as a disabled woman.  People were wonderful.  They went out of their way to be kind and helpful.  I was able to reserve the same front seat for the return trip to Pennsylvania by ringing a special number.  We were able to obtain a wheelchair at the entrance of Port Authority for the long walk down the concourse to the coach gate and the Port Authority employees were helpful and friendly.  It does make a difference.  I so feared and dreaded the journey.  I knew how helpless I would be.  My helplessness was countered, however, by the helpfulness of others.