Since October 28, I have been in a mind numbing stupor. Upon seeing my wheelchair in pieces my first reaction was disbelief. I felt as though a part of my body had been amputated. My wheelchair is not akin to my legs--this terrible analogy is often used by health care professionals and those that do not use a wheelchair. My wheelchair is not a body part but rather an extension of who I am as a human being. As I sat in a deeply uncomfortable chair and in pain late at night in a nearly deserted airport I knew that my life had been radically alerted. I knew instantly that my life would be comprised for weeks if not months and possibly years.
Disbelief quickly gave way to mourning. I am not ashamed to admit that I shed many tears on October 28 and the weeks and months that followed. I castigated myself for flying. Every time I fly and my wheelchair is taken away and stored in the cargo hold I know there is a distinct possibility that it will be destroyed. The airline industry destroys wheelchairs and all sorts of mobility devices on a regular basis. As I cried none of this mattered. I missed my wheelchair. I knew exactly how to move. I knew how it rode when the front bearings were worn out or new. I knew the exact tire pressure at any time. I knew its tipping points. I knew how far I could lean forward, backwards or to the side without falling. I knew how it reacted to sub zero temperatures and the heat. I loved how the frame creaked when I was outside in frigid weather. My wheelchair rarely failed me. There was not one extra screw on the wheelchair. Every screw had a purpose. No more than three allen wrenches were required to make basic adjustments. A single allen wrench set could empower me to do anything I wanted to the frame. My wheelchair was a simple elegant design.
My loss is immeasurable. The destruction of my wheelchair absolutely devastated me. Since that night, I have wondered, feared really, about the quality of my life. I was shaken to my core in large part because I knew that it would be long time (months) before my life would return to normal. That night airline personnel were as shocked as I was by the destruction. Two United Airlines employees told me they had never seen anything like it in their careers. It was instantly apparent my wheelchair was destroyed beyond repair. Judge for yourself.
United Airline does not directly deal with broken wheelchairs. They use an outside contractor, Global Recovery Network, to find a loaner wheelchair and eventual replacement. On October 28 I was repeatedly assured United airlines would do everything in their power to replace my wheelchair. I was beyond skeptical. Wheelchairs are not cheap. Worse, wheelchairs are poorly made. Wheelchairs are not built for the end user in the United States. Wheelchairs are constructed to meet insurance standard price points. Wheelchairs are not built to last. A decent manual wheelchair costs thousands of dollars and likely will last three to five years when rigorously used. In short, I was screwed. Everything I wanted to accomplish in the months ahead would not get done. I dreaded the future.
Beyond the emotional devastation, I was well aware I could not function. I could get around my apartment but there was no chance I could go outside. I could not shower because I use the back uprights to balance getting out of the tub. I was also at a high risk for a skin break down because I was sitting differently. The temporary uprights were flimsy at best so the next day it was off to the Home Depot for something, anything, that could operate as an upright.
Metal conduit pipe was the best solution. Along with copious amounts of duct tape I fashioned a weak upright. I still could not go outside but I was not at a significant risk for falling. The following days were spent on the phone with United Airlines and Global Recovery Network. Trying to get an appropriately fitting loaner wheelchair was going to be very difficult--think needle in a haystack. I have long legs that require my wheelchair be very high as in floor to seat height. Getting a loaner wheelchair and eventual replacement was going to be a slow laborious process. Most of my days were spent on the phone with United Airlines and Global Recovery Network. It took a week to get a loaner wheelchair that was remotely useful. Very quickly I realized that until a new wheelchair arrived pain was going to be a constant companion. Within seven days I also developed a superficial pressure sore on my buttocks. My seating position was extremely poor and placed too much pressure on my skin.
What sticks out in my mind months later is how well United Airlines and their subcontractor Global Recovery Network acted. Phone calls were returned promptly. Every person I spoke with was the consummate professional. United Airlines assured me again and again that I was to get the best replacement humanly possible. One gentleman from United who I particularly liked told me "we are in the airline business. We know nothing about wheelchairs. Get what you need. We broke your wheelchair and we will replace it. Global Recovery Network knows how to facilitate this." What I appreciated was the system in place to replace my wheelchair. There was no ambiguity. We broke your wheelchair. We will replace it.
Global Recovery Network did indeed know how to facilitate the process. What United Airlines and Global Recovery Network cannot do is make those charged within the durable medical industry for replacing wheelchairs act quickly or professionally. I have avoided the wheelchair industry because decades ago I realized they provided abysmal customer service. Ableism is rampant in the wheelchair industry. The end user is treated as an incompetent annoying child. Getting a new wheelchair I knew was going to be a painful and laborious process.
I do not understand the dysfunctional wheelchair industry. The complete and utter lack of professionalism is shocking. The dealer I was forced to interact with was terrible. Phone calls and emails took days to return. The reviews for the company on Glassdoor and multiple websites were scathing. To get a phone call returned required pressure from United Airlines and Global Recovery.
The office person I had to deal with was point blank rude and condescending. Yes, they would replace my wheelchair but it would be done at their pace, at the times and dates they chose. It was not until November 8 that a person was even available to meet with me. This initial evaluation would start the process of ordering and selecting a wheelchair. While office personnel were miserable to deal with, the two people who actually came to my home were competent professionals. The seating specialist knew the industry and the technician knew how to adjust a wheelchair. Yet even these people can only do so much. It was not until the day before Thanksgiving, November 22, that two demo wheelchairs would arrive. Almost a full month had passed. A wheelchair had not even been ordered.
Did anyone think about the quality of my life? It is one thing for an airline to destroy a wheelchair but what is never ever discussed is the ramifications. I lost months of time. Even today some three months later I am still dealing with the fallout of my wheelchair being destroyed and not replaced in a timely fashion. Exactly what are we wheelchair users supposed to do? Well, what I did was cancel plans thanks to a skin sore that prevented me from sitting. Life got pushed to the wayside. Pain became a constant. Yet there was no rush, no sense of importance from the company to replace my wheelchair. For goodness sake, a month went by before I could even see the two wheelchairs that might work for me. This is unacceptable. An evaluation should have been done within 48 hours of my wheelchair being destroyed--that should be the industry standard. I should have been treated with respect by office staff at the durable medical goods company but was not. Amazingly, I was told by many the company I dealt with was better than all alternatives in the state of Colorado. United Airlines and Global Recovery Network shared my feelings. The wheelchair industry is dysfunctional and we people with a disability suffer. And believe me in the last months I have indeed suffered.
While I have not dealt with wheelchair manufacturers, I do follow the industry. It took a matter of days to realize my choices in terms of wheelchairs was limited. Based on my TiLite loaner wheelchair, I knew even the titanium frame would not last long. Everything about the TiLite line and its competitor Quickie models was cheap. Poorly constructed and designed, these wheelchairs were not meant to last. I estimated a frame would last two years at most. Only two wheelchairs would possibly work. A Panthera, the lightest wheelchair manufactured of carbon fiber or the Apex also made of carbon fiber made by Motion Composites. It took less than five minutes to reject the far more expensive Panthera (with upgrades it would cost well over $10,000). It is a beautiful wheelchair. It is slick, has great design lines, and phenomenal look. It really could be in a museum. What it had that I despised was branding everywhere. The wheelchair screamed money. Yes, this is a wheelchair for the 1% and they want the world to know it. As the architect Louis Sullivan argued, form follows function. The Panthera is a museum piece and not truly functional. Given the cost, it is wildly impractical. Forget about spare parts or be willing to wait a long time for them. Forget about working on the wheelchair if something goes wrong. More to the point, am I going to realistically put a $10,000 wheelchair in the hold of an airplane? Not a chance. I decided to go with the Apex wheelchair with the costly carbon fiber frame upgrade. I also added multiple upgrades such as spinergy wheels.
The Apex wheelchair arrived on a late afternoon shortly before Christmas. The seating position is a radical change for me. Modern wheelchairs are squat, take up little space, have small front wheels, narrow one inch rear wheels, and are low to the ground. My old wheelchair was quite long, heavy, had 8x1 3/4 front wheels, 24x1 3/8 ths rear wheels, and a high back. It was a 1980s design and looked antiquated by modern standards. From time to time young paralyzed people would look at my wheelchair with a sort of curious disgust. I would laugh and tell them that my frame is likely older than they are!
As I write these words, I am sitting in my new wheelchair. It is all black and rather Darth Vader looking. I don't know my wheelchair well. The first four weeks using the wheelchair were filled with pain. I hurt everywhere from the changed seating position. All balance points were different. I worried about falling constantly. My skin was getting red from pressure in places it has never been before. I had to build up the amount of time I could sit in it daily. It has only been in the last week that I do not spend many hours in bed relieving the pressure on my skin. Getting on and off the train has been an adventure. With solid small front wheels I need to lean back far more often than I ever did when navigating cross walks. The first trip to Denver via the train was a nerve racking experience. Just imagine you have sat the same way for nearly forty years and suddenly your spouse throws out your favorite chair.
October 28 was life altering in ways that are hard to explain. By way of analogy, how can one explain paralysis to those who are not paralyzed? Any competent neurologist would classify me as a T-3 complete paraplegic. How do I explain that I do indeed have sensation but far from typical. How do I explain the constant burning in my hips that in no way conforms to a pain scale of one to ten? How do I explain that cleaning a wound on my foot is painful but only hours later? How do I explain I could be outside all day in frigid temperatures skiing or biking but get cold eight or nine hours later? How do I explain the destruction of my wheelchair left me unable to write for months on end? How do I explain the emotional trauma caused by the destruction of my wheelchair? How do I explain the love lost for my old wheelchair? How do I explain the flood of tears of tears as I threw my old wheelchair frame in a dumpster? How do I explain how outrageous it is that airlines destroy wheelchairs on a regular basis? How do I explain the weeks and months lost?
I do not have any answers for the above. I do know the destruction of my wheelchair has changed the direction of my life. It has thrown me in a way beyond that is beyond imagination. A part of me died on October 28. It was not until today, February 1, that I can begin to adapt; but adapt I will. We cripples are world class adapters. I have the potential to fall in love with my new wheelchair. I liken my experience to the birth of a child. My wheelchair is like a new born infant who I don't know yet love. There is much for me to learn. What I don't know is if my wheelchair has a soul. To date, it feels cold and clinical. Carbon fiber is light weight and strong. Indeed, the frame weighs just 9.2 pounds and feels as rigid as steel triple its weight. I have not become one with my wheelchair. The human wheelchair relationship is akin to a unique symbiotic relationship. What I need now is time. Time to forge a relationship with the amazing piece of technology I use and sit in. To this end, I will be posting a lot in the coming days about my relationship with my new wheelchair. I do so in the effort to bridge the cultural gap between those who use a wheelchair and those that do not. Unlike the bipeds that surround me, absolutely no stigma is attached to wheelchair use. In fact, I see a wheelchair as one of the most empowering inventions ever made. The problem as I see it (and always have seen it since I read the Body Silent) is cultural. We as a culture devalue those who are different. The more obvious the difference, the greater the stigma. This cultural divide is hysterically evident in the Apex wheelchair manual. About the only laughs I have had in recent months has been reading the wheelchair manual. For the last 40 years I have been using a wheelchair all wrong! I will be posting about this frequently as it is rich fodder for humor and cultural analysis. So yes I am back. May the bigoted bipeds tremble as I roar about in my sleek new rigid carbon fiber wheelchair.