Wednesday, December 1, 2010

I'm Not As Tall As I Used To Be!

I’m Not As Tall As I Used To Be

As strange as it may seem, at one time I stood five foot seven. Today I’m half that size, each day brings me hope that through determination and effort, I’ll be back tall again. One thing is certain: I will be grateful for my tallness.
No, I’m not some freak of nature, I just took the wrong step while vacationing in France and fell down landing on my side. I moved into a fetal position after I instinctively glanced down at my foot to see the reason for the unbelievable pain emanating from it. Mistake. I saw my anklebones were no longer gracing the side of my foot, but rather they protruded fore and aft. After that first glimpse melded in my mind with the pain I was experiencing, I could no longer bear to look. The wonders of nature some how kicked in and pumped some adrenalin into my body and whatever else to help me escape the pain—my husband said it was morphine instilled into my blood stream, but only after they set my fracture without any anesthetic. Ouch! Notwithstanding the momentary relief, I’d suffered an angular (the worst kind) fracture of my right ankle along with fractures of my tibia and fibula. Three surgeries later, and three months of healing and I’m still half my former height or rather still living life in the sitting or reclining position.
The reason I’m only half my size is that I live each day confined to a wheelchair. Oh, don’t fret, it won’t be for the rest of my life, however, it will be for a very long time to come. I’m told that since I had three surgeries within a 10-day period, I’ve developed some significant scar tissue and that means a long rehabilitation, e.g. one to two years. Also a lot of weakness and swelling from a condition called reflex sympathy dystrophy—this condition brought on by too many surgeries too close together.
With way too much sitting time on my hands—meaning thinking time—I’ve come to the realization that I am guilty of something I thought I would never be guilty of: insensitivity. What? Yes, insensitivity to other people, who like me are confined to a wheelchair.
During my long healthy life I have tried my best to open doors for people confined to wheelchairs (or mom’s with babies in strollers), however, now I find that my actions were insufficient. I say that because I never really thought for one moment what it might be like to spend one’s life confined to a wheelchair. I’ve learned much through my own disability and realize how fortunate I have been to have relatively excellent health until this incident.
I’ve promised myself to go beyond just feeling sorry for those confined to a chair and instead, plan to recognize that they are my peers and I care about them and understand the inconveniences they face every day of their respective lives. I don’t know where this will lead, but it must be something greater.
What is it like to be so short after a lifetime of enjoying my tallness? Well, I do have a new perspective to share.
This past summer our vacation began in Dijon, France. We’d taken the fast train (TGV) from Paris Gare de Lyon to Dijon, where we were to stay for a month in a home exchange. Because our plan was to return to Paris at the end of this vacation, we purchased a round trip train ticket and made advance arrangements with a friend for a ride back to the Dijon train station at our journey’s end.
After the fall and two subsequent surgeries in Dijon, I was ordered to bed rest and it was an absolute necessity to have my feet elevated (I should mention that I severely sprained my left foot, too, so was completely immobilized). They (my French doctors) had, along with additional internal hardware, inserted an external traction device on my right leg and it protruded about eight inches above my leg, was very heavy, and made movement virtually impossible for me. I had to be very careful about bumping the device since it was affixed to my leg by drilling a long screw through my heel and three long screws through my fibula. Ouch, again!
The problem with train riding is that there are about four or five very steep narrow steps to climb in order to board the train. I might add here that there are no laws in France, such as the American’s With Disabilities Act, to create access to travel people like me who are disabled. Indeed, in most train stations throughout France it is necessary to schlep luggage down steep stairways, go under the train tracks, and back up steep stairways just to get from the train track into the train station. So, forget traveling by train if relegated to a wheelchair! No elevators, escalators or lifts exist at train stations to my knowledge.
With this in mind, there was absolutely no way to get me into a train. It was an impossibility to manage me and also carry our luggage and laptops (we’re both writers), onto the train. No, instead we had to rent a one-way car to drive from Dijon to Paris. The car had to be large enough to allow me to lie down in the backseat, placing my legs on stacks of pillows. By the way, Euro Rail at first refused to refund us our train fare, but subsequently after seeing pictures of the horrendous injuries I sustained, they knocked $100 off. For this we were very grateful.
I was, of course, very worried about transitioning from the car once we left the hospital. We were to spend the first night out of the hospital at a friend’s home. Fortunately, he had a wheelchair, so we managed to get me from the car into the house. Once out of the hospital, I had my first experience in using a bathroom not designed for handicapped. What I found was that a standard wheelchair (one that can be wheeled around by the occupant, as opposed to a transport chair used simply to transport with someone else pushing), does not fit through a bathroom door. For me, it meant that we had to tell our host family not to come into the hallway of their home while I used the facility since the door had to be left open and because I could not stand up, I had to disrobe in the hallway with help from my husband. Oh the humiliation.
In France homes and apartments have “water closets.” This is a very narrow small room that only has a toilet in it and barely enough room for one to maneuver onto the toilet seat. With the chair parked at the entrance of the water closet, I had to use my left foot (with an air brace in place) to swivel into the bathroom and onto the seat. This was extremely difficult because I then had to rise and replace my clothing before sitting in the wheelchair again. I’d already suffered humiliation in the hospital from lack of privacy, but now I had to endure it with my friends. Most uncomfortable, and I promise never to use a handicap (although I’d rather say handi-capable, because we can do most things!) toilet stall in a public place again because should someone in a wheelchair need to use the toilet, I would feel awful for usurping that need (if I were not in a wheelchair). Our friends were very understanding, but this new experience was still embarrassing to me and the difficulty of the movement caused me additional pain as well.
Trying to sleep with the external traction device hooked to my leg, kept me awake most nights. I am a side sleeper, but was only allowed to sleep on my back with my legs elevated. In addition, I had to have shots every 12 hours (into my stomach) to prevent a thrombosis. By the time I returned home, two weeks post injury, I had slept only a couple of hours each day. The traction was a nightmare for me and it was very difficult to maneuver because it protruded into the air so far that I couldn’t sit up to a table or in a car seat sitting straight forward because there simply wasn’t room.
We drove to Paris the second day after I was released from the hospital. We planned to spend the night at the Sheraton CDG so that I could rest before the trip from CDG to LAX. Although we’d ordered a wheelchair at the curb at the Sheraton, nobody was there to greet us when we arrived at the hotel. I stayed in the car, alone, while my husband worked out the terms of getting me from the car into our room. After about half an hour, a nice man showed up with a wheelchair to transport me. I had been trained to transition from bed to chair and from car seat to chair wasn’t a big deal. However, it had been a very long drive and I had not used the bathroom on the trip—again, there would be no way as bathrooms in France are either holes in the ground upon which one must squat or very small stalls and we also had no wheelchair either (no one-way rentals available).
What a horrible experience. I’d never given any thought to not being able to use a bathroom. I mean it truly is something that is usually optional, right? If a public restroom is too dirty, I’ve exercised my option to simply wait until I got home. Or, if I found a public restroom unavailable because it was being serviced, I’d wait until I got home. Even if I wanted to use a bathroom on this trip, I couldn’t. Another eye opener and this was just my second day out of the hospital. I had endured a four-hour drive without drinking even a sip of liquid because I feared having to use the bathroom. Not a good way to travel. Suddenly bathroom thoughts became a primary part of my thinking—something that had been automatic before this incident.
I also have to say that at one point we stopped for gasoline. In France, where trust is important, a customer first pumps gas then goes into the mini mart and pays the cashier. My husband locked the car door and went in to pay. Suddenly, I was alone and realized my helplessness. What if someone were to see me there, in my helpless condition, and try to kidnap me? I know these are crazy thoughts, but when suddenly you are unable to look out for yourself, things like this do pop into your mind. I even worry sometimes that if there were a fire in our home, I could not run to safety. It’s not that I dwell on these things, but really it is difficult not to think about it once you’ve lost your ability to be independent.
Once in our hotel room in Paris, I couldn’t wait to hit the bathroom. We got the luggage inside the door, paid the porter and shut the door. “I’ve got to go!” I said. “I’m sure you do.” My husband replied pushing me quickly toward the bathroom door.
What? The chair won’t fit? Talk about going from a scale of ten high to one low, my first instinct was to cry—something I rarely do since I’m relatively happy most if not all the time. My caring husband immediately picked up the phone and politely requested a room that would accommodate a wheelchair (what was the receptionist thinking, anyway?). Of course, they moved me to a room designed to accommodate a wheelchair and I was able to not only use the toilet but also to wash up as the chair fit nicely into the sink area. However, again I was confronted with realization of how my life had changed.
My next surprise came my third day out of the hospital, when I boarded the aircraft that was to take us from Paris to Los Angeles. We were in premier seating (although I might add—and as if things were not bad enough—Air France did not comp us a seat or agree to upgrade us either. We had hoped for kindness from the airline, especially since we are air mile members and have flown this airline six other times. Boy, we were wrong. Even in light of our dire circumstance and carrying with us a note from my doctor that I could not fly unless I could elevate my lower extremities, they flat refused us any courtesy for an upgrade. Instead, Air France dinged us $9,000 each to upgrade, refused to credit for the return flight we’d already purchased and had the nerve to charge us 159 euros each because, although we were flying on the same flight we’d earlier booked, we changed our seats! Remember that when you fly Air France. Also, don’t forget to purchase emergency medical insurance BEFORE you go, it will save you by paying for GOOD (not substandard) medical care and also will pay for your first class flight home).
Because of our premier status (by the way there was only one other passenger in this expensive seating area), the bathroom was available to us and this other man. The aisle wheelchair would not, however, fit into the tiny bathroom. We had to ask the flight attendant to stand-by in the hall, blocking entrance, leave the bathroom door open, and again I nearly fell trying to maneuver onto the toilet in the tiny space (mostly because of the horrible offending external traction device drilled through my right leg and the instability of my injured left foot). I wondered how people who fly and are handicapped manage to use the restroom. It seems an impossibility.
The flight was long from Paris to LAX, and I avoided liquids even though it was dangerous for me to do so. The thought of enduring the embarrassment of having to use a public bathroom with the door wide open was more than I could handle, so I did what I had to do.
The next rude awakening came when we arrived at LAX. We thought we had made it clear to the Sheraton Hotel just a few blocks from LAX that we needed transport from the airport to the hotel, however, something was lost in the translation. Instead, we had to take a taxi. In Los Angeles, drivers worry about their respective safety since crime rates are so high, so they have plexi-glass dividers separating them from their fares but also limiting backseat space markedly. The approximately one-foot space within to place the rider’s feet, was insufficient even for a healthy rider. There was no way I was going to fit into a taxi. Also, the large airport wheelchair I was sitting in was at the curbside sidewalk level and the taxi was at street level with a drop of about nine inches. There was no way I could get from my wheelchair into the taxi. Finally, the barely understandable foreign cab driver suggested I sit in his front seat. I agreed and he cleared it of all the junk and I basically fell into the seat, causing a great deal of pain in both my broken ankle with the debilitating external device and my left sprained ankle. How do the handicapped ride in taxis? Another conundrum.
While the hotel dropped the ball on transporting me from the airport, they did put me in a room designed for disabled (after all, I was back in California), which made it easy for me to use the bathroom and to bathe. In addition, they provided free bus service from the hotel back to the airport. There was a lift on the bus and I only had to roll onto a platform and was then lifted up. The hotel sent along a porter who made sure I was safely in the hands of airport personnel and into their wheelchair before he returned to the hotel with my borrowed chair. How nice was that? I’d recommend Sheraton LAX any day. Kind, caring and sensitive to handicapped individuals, and much appreciated.
Finally, after a three-day trek, we made it home. Our dear friends not only met us at the airport, but they were kind enough to rent us a wheelchair and have it at our home when we arrived back so that I could transition from car to house—the airport wheelchair had to stay on the premises, of course, so after the nice skycap got me to the car, I was stuck. My new wheels served me well, as I moved from car to house. Another lesson: friends are more than friends when it comes to the needs we had. They were so helpful and we could not have made it without their love and kindness.
All seemed well now that we were home, except once again I had traveled from LAX to Honolulu, a five-hour flight, without using the bathroom and without drinking any liquids. I could hardly wait to arrive home and use my own bathroom. It was then that I once again broke down into a blubbering mess. My nice rented wheelchair was about six inches wider than the entrance to my bathroom door! There was no way for me to use the bathroom! Oh, horrors, I thought.
Fortunately for us, just prior to leaving our friend’s home in Dijon, he had offered and we had accepted a bedpan—just in case the trip by car proved to be too long—therefore I was saved until the next day when we arranged delivery of a narrow transport chair. This is not to say that using a bedpan is a glorious thing. To the contrary, it is awful, and I thought I had graduated from the embarrassment of it after leaving the hospital. As I soon learned, such was not the case! Rather than waking my husband in the middle of the night, I’d drag out the dreaded bedpan—something that occurred only for a couple of weeks (the next day, when I visited my doctor, he put me immediately into surgery to repair the substandard prior surgeries and to remove that horrible external device drilled into my leg by the French doctor).
If there is a hero in all of this, it is my husband. He has had to not only witness me fall, the setting of my fracture without benefit of anesthesia by the French doctor, wheel me around, worry about my transport while traveling and also empty my bedpan, but he has also had to assume the chores, including cooking, shopping and the like, previously performed by me.
We’ve learned to adapt around the house, although we’ll definitely have to hire a contractor to come in and repair all the ruts and chips in wood and paint from trying to squeeze the transport chair into small places in our home. That’s another thing: homes are not designed to accommodate wheelchairs. I assume that, like us, others adapt their environment to needs.
We’ve purchased a shower chair. The first time I was able to shower, instead of striping down and washing each body part in the bathroom sink, rinsing it over and over to get the soap off, and shivering with wet skin all the while, I sat on my new shower chair and cried for the first 15 minutes while warm water caressed my back. Unfortunately for me, we have a kooky shower that regulates the water temperature only when the shower knob is turned fully on. So? Right! So, what that means is: when I turn on the knob the first shot of water out is ice cold. I have to sit, since I’m still not weight bearing, with my back to the shower spray and endure a full 15 seconds of an ice cold shower of water! I often think of how nice it would be to stand up and move out of the way just for that brief period, then slink back into the hot water. Oh well, it’s another one of those inconveniences. At least I know that I will some day be upright, and there are many who have no choice and must always endure the inconvenience. I’m fortunate, and I know it.
We have a three-story hillside house that we’ve spent many years remodeling and improving. Fortunately our first street level has the main living area (kitchen, living room, full bath) and a bedroom. I wonder at times what we would do if this were not the case and if I had to go downstairs to sleep! In the three plus months that we have been home, I’ve gone downstairs twice. To do this, is not easy. I sit on the sofa, lower myself to the floor, scoot to the internal stairway and lower myself step by step down to the second level of our home—the place where our “usual bedroom” is located. I’ve done this so that I can point out clothing that I need my husband to haul upstairs and also to view some of the work that has been done by our contractors. It’s not so bad getting down, but coming back up is very difficult since I must pull myself up one steep step at a time. If I look at the glass being half full, instead of half empty, I can say that I really do have some improvement in my upper body strength—which isn’t so bad.
One day, after nearly three months of sitting, sitting, sitting and not doing anything independently (I am usually very independent), I convinced my husband—who was leaving to attend a business meeting in town—to drop me at the huge Ala Moana Mall to do some shopping for him, since his birthday was only a day away. He reluctantly agreed and got me into the elevator at Nordstrom before leaving. It was a hot, humid day and this mall is an outdoor mall. I wheeled myself, maneuvering through crowds and sweating, until I came to the shop I wanted to shop at. On the way to the shop, there is a ramp for handicapped to use to get to street level, next to an area of steps. I wheeled down, but it seemed very steep, so I held onto the side railing slowing myself so that my chair would not shoot out into traffic that passes through this particular division in the mall. It was a bit scary and I wondered if other chair bound people felt the same way or if it was just my own fear.
I purchased the things I wanted, then realized I had no place to store them—wheelchairs that are people operated (not motorized) don’t have baskets and such. So, I put the large bag on my lap and wheeled myself out of the store, albeit much more slowly. The bag kept sliding, so I’d replace it on my lap, and begin to wheel, making my way back to the area where I was to meet up with my husband again. Horrors! I came to that same ramp—the one that had already frightened me—and immediately began to sweat realizing that while I had to slow myself going down, I now had to climb it and with packages and my purse teetering on my lap! I tried to push forward and up with all my strength and immediately became aware that there was no way I was going to make it, I just didn’t have that kind of arm strength with my small frame. I grabbed the railing and pulled with all my might, moving forward a couple of inches, but at least moving upward. Beads of sweat began to drip down my temple and my heart raced. A young Japanese man in an information booth to my left happened to be leaving the booth for his break. He saw me and immediately came over, took the large package from my lap and using all his strength (he was small too) pushed me up that horrible long steep ramp. I was embarrassed but relieved for his kindness. Not only did he push me up that long ramp, but he also asked where I was going and he pushed me the entire length of the wing of the mall and up an additional ramp near Nordstrom. How lucky was I? I have learned that there are many angles out there, who go out of their way to be kind and helpful. People who see me and realize at once how fortunate it is that they are upright. Thank God for those angels! I don’t think I’ll venture out alone in the future, something I used to do without thinking about it. Funny, now all of a sudden I have hazards at every turn. Again, my mind leaps to the plight of those who face these challenges daily. Perhaps, like me, they resolve to only go shopping with someone else!
I decided one day while we were visiting the Apple Store where my husband was replacing his old iPhone, that I could wheel down to Macy’s to pick up a replacement pair of Capri pants that had been cut off of me by the doctor at the hospital in Dijon. I just loved those pants! Macy’s was a short distance from the Apple Store, so I figured it would be an easy (and independent) thing to do. Again, I was confronted with challenge. Wheeling on carpet, I found was not so easy—especially when there were many people out shopping that day. I made it, but my arms were aching and I was out of breath. But, the real dilemma came when I tried to search for the pants. I could see them on a rack in the distance but could not get my chair to move through the narrow aisles stuffed with racks of clothing and on a carpeted area. I looked down aisle after aisle trying to find a way into the rack I needed, but could not get to it. A very nice older saleswoman saw me and came to my rescue—recognizing that I was unable to maneuver. She went to the rack and retrieved the pants I wanted, in the size I had asked for, then brought me to the cash register where she rang up my order then walked around and placed the plastic bag on the back handle of my chair. Another angel, I thought! I waited outside the Apple Store for about a half an hour. During that time I reflected on how difficult it must be to carry on a normal life while sitting in a chair. I know the district manager for Macy’s and I’ll be sure to send her an e-mail and tell her of my experience. Hopefully they’ll change their way of doing business so that all people are well served. Strange, this Macy’s is so near to my home that I go there often—even if just to browse—and I’d never realized until that moment that it was not a store that is conducive to shopping for all people.
I must say, in all sincerity, that due to my inability to cook (my poor husband has no cooking experience or desire), we frequently eat one meal out. Each time, we have been met by hosts who willingly give us a large booth where I can elevate my foot on a pillow and they graciously remove my chair and tell us to let our server know when we need it back. They are always kind and accommodating. I am trying to cook, more and more, but realize how difficult it is for those of us relegated to a chair. I have to roll around on the chair, to get supplies I need and cutting things like vegetables and fruit at sink level is very difficult, but I manage even though it takes me at least five times longer to accomplish this task. Something so simple as cooking (I love cooking), has become a difficult task for me. I will always remember these inconveniences and realize how fortunate I am to have the ability to stand and accomplish those things that I’ve taken for granted for so long.
I do have a complaint about movie theaters, though. They set aside a very small area (one aisle with two chairs) at the back of the theater which is flat and can accommodate a wheel chair. So, if more than one handicapped person is taking in a movie, there is no place for another one to sit. It’s very frustrating. We’ve learned that we must go to the theater much earlier in order to be accommodated, but then I feel just awful when someone else comes in and I’ve hogged the only place to sit. It seems like the owners of the theater just threw a Band-Aid on a deep gash just because it had to be done, e.g., they had to do something to comply with ADA. I know it’s small potatoes, but handicapped people enjoy getting out and the movies serve as a great bit of entertainment in that respect.
Each day is a new day in which my eyes are opened to some new thing that, while easy for those fortunate enough to be upright, becomes a nightmare for those of us who must sit. I am grateful that through my determination to recover through extensive physical therapy and retraining I will eventually return to an upright position, but I shall forever carry with me understanding for those who must endure. In so many way, our world could be changed to accommodate everybody. Maybe some day it will happen. Let’s hope!