You recently kindly wrote me in response to my application for membership in the CAPD asking me: “… in what way has your disability changed your life for the better?”
As I mentioned to you, I apologize for the delay in getting back to you. I have now finished my impersonation of Paul Bunyan on my rural acreage, and now have the time to accommodate your request. The delay has also given me more time to think about my answer to you. I will preface my answer to you with a short history of my medical problem.
Approximately 29 years ago, while putting up a basketball hoop on the end of the garage for my children, the ladder slipped out from underneath me. I fell down with the ladder and suffered an inversion injury to my right ankle. I suffered three injuries to my ankle, two of which were immediately obvious, and were repaired in the operating room the same day. However as I came out of the anaesthetic, I was still having tremendous pain in the ankle, and I complained to the nurses, and to my orthopaedic surgeon that the pain I was experiencing was way out of scale for what I should be experiencing for the two relatively minor injuries that I sustained and that were repaired. That was the beginning of “Oh that’s normal – suck it up”.
So I did. I sucked it up for a year and a half before I could barely walk due to the pain. During that period, I consulted the other three orthopaedic surgeons in the city, and received three more “suck it ups”.
I finally consulted a physiatrist friend of mine in Edmonton, and she urged me to go for another x-ray – which had been discouraged by all four of my orthopaedic surgeons, but which I elected to have done at her urging. That is when I discovered that I had an avascular necrosis of the superior two thirds of my talus due to an undiagnosed transverse fracture of the talus. Interestingly, the radiologist who read the original x-ray on the day of my trauma was the one who happened to read the x-ray a year and a half later. He called me up to the hospital and was extremely anxious and behaving fearfully about my response to his discovery. I immediately advised him that he should not worry about me suing him or taking other retributive action, since although the original fracture line was clearly visible on the original x- ray and should have been seen, I felt that it was an honest mistake, and I advised him clearly and repeatedly that he need not worry about me seeking revenge or redress in any way. It has long been my feeling that people who seek legal redress for medical or surgical misadventures, soon get themselves into a spiral of negativity and that the legal process sets up a necessary adversarial relationship. Having seen this occur in many of my patients over the years, I felt was the process was detrimental to the health of the patient. I felt that I needed all of my positive energy to overcome what I felt would be a long and difficult struggle with this condition.
I was referred to an orthopaedic surgeon in Calgary who was a specialist in lower limb trauma, and he advised me that if I went absolutely and completely non-weight bearing for 9 to 12 months, that I may get some remodelling of my talus. I started on crutches that very day, and for the next nine months did not so much as touch my foot to the floor. In the meantime, I carried on with my life and my medical practice as well as I could. Nine months later my orthopaedic surgeon advised me that I had obtained as much remodelling as I was going to get, and I began weight bearing again.
Over the next 27 or so years, I experienced constant, and gradually increasing pain in my ankle that eventually limited my activities severely, and about eight years ago I sought the advice of a new orthopaedic surgeon in our city who was also a lower limb trauma specialist. Over the next five years I had three surgical procedures to my ankle including the installation of an artificial ankle, which was wonderful for a year and a half, but eventually the inevitable ongoing march of osteoarthritis that was occurring because of the abnormal geometry of my ankle over the last two decades took over, and I sought my surgeon’s advice once again. At the time of my artificial ankle placement, I advised my surgeon that if, once he had my ankle open on the operating table, he felt that the placement of an artificial ankle was going to be difficult or sub par in any way that I did not want to come out of the operating room with the ankle still attached, and made it clear to him that I gave him permission to do a below knee amputation. So when I consulted him three years ago, he reminded
me that there were no further surgical options available, and I reminded him that there was one left. He immediately agreed, and on June 3, 2014 I had a right below knee amputation.
I suffered the usual postoperative and phantom limb pain, but I was resolute in my determination to solve both of those problems without prolonged use of narcotics or neuroleptics, and having done my homework on the relatively new field of neuroplasticity, I felt confident that I could deal with the phantom limb pain using mirror therapy and visualization, and by the end of the third week I had no further postoperative pain and no phantom limb pain, and I have not used a single tablet of even a Tylenol for my limb pain since that day.
Having a below knee amputation and having the expertise of my surgeon and my prosthetist has enabled me to regain my life as an active now 66 year old man, and there is not much that I have discovered that I cannot do. I am very grateful for my amputation and for my prosthesis, and feel that I absolutely made the right decision in having it done.
I should point out that I do not consider myself disabled. I consider myself impaired.
Impairment is a medical construct, and is defined as: “A significant deviation, loss, or loss of use of any body structure or function in an individual with a health condition, disorder or disease.” So, by definition, I have impairment since I have lost part of my body structure.
Disability on the other hand, is a socioeconomic construct, and is defined as: “Activity limitations and/or participation restrictions in an individual with a health condition, disorder or disease.”
So what have I learned? Lots. Addressing your original question of: “what has changed your life for the better”, many of the things that have changed my life for the better are things that I have learned. The remainder are things that have enabled me to regain a life of physical activity again and freedom from pain.
- I began to learn the moment that I went on to crutches after my initial visit with the first lower limb trauma surgeon. I learned what it was like to be truly disabled and on crutches for almost a year.
- I have learned that the people on crutches are discriminated against. I learned that people on crutches are often treated as if they have an intellectual or cognitive disability. I was occasionally cheated on my change in stores, or otherwise treated as if I were mentally impaired.
- I am a 6′ 2″ man with what I have been told is a rather stern countenance, and over the early years of my practice, I experienced reserved and often cold receptions from nurses in the hospital which I could never quite understand nor explain. Once I began using crutches, I discovered that these same nurses were kind, inclusive, and welcoming to me at all times, and I realized that now that I was on crutches, that I appeared more human, less intimidating, and more vulnerable to them, and they welcomed me with open arms.
- I have learned that there is a difference in how people treat users of crutches depending on the type of crutch used. Since I was going to be using crutches for a prolonged period of time, I bought myself a pair of Lofstrand crutches – the type those with long-term or permanent disabilities use. When I used the Lofstrand crutches, people were quick to offer me assistance in buffet lineups, opening doors for me, or otherwise attempting to mitigate my apparent disability. In the last eight years as I have been on and off crutches for shorter periods of time, I have just used regular crutches, and when one wears regular crutches, it becomes a signal to others that one is likely just using these crutches for short period of time, and most if not all offers of assistance are not offered. I still find this curious and mostly unexplainable.
- I have learned to throw modesty out the window and embrace humility. One learns this quickly when going to the swimming pool for example, and having to crawl on hands and knees through the locker room, toilet area, shower area, and pool deck all the way to the water’s edge where one can finally get into the water. One learns this quickly when one is frequently doffing one’s pants to try on yet another check socket or prosthetic. One learns this quickly while golfing when one has to stop every 4 to 6 holes, hike up one’s shorts or doff one’s pants to empty water out of one’s prosthetic liner. These things for all practical purposes have to be done in public. One gets used to it. So I learned how those with permanent disabilities go through their entire life every time I do one of these things.
- I learned about the anatomy, pathophysiology and disease processes of the lower limbs, and the difficulties faced by those with lower limb disabilities.
- I have learned about different kinds of prosthetics for both upper and lower limbs, how to adjust them, how to repair them, how to fit them, and how to maintain them.
- I have learned that people are curious but hesitant to ask about my prosthetic leg, so when I notice people looking I take the opportunity to ease their discomfort by inviting them to look closely at it or touch it, and take the opportunity to educate them about it.
- I have learned about phantom limb pain, and what works to treat it and what doesn’t.
- I have learned that being a below knee amputee just barely qualifies me for membership in the amputee world, after attending international amputee conferences where I met people who survived life-threatening diseases or trauma but lost all four limbs in the process.
- I have learned to be grateful – very grateful for what I have and what I don’t have.
So in summary, I am thankful for the amputation and the new prosthetic leg that I have because it has granted me a return to an active pain-free life. Just yesterday I went with my son to the gym where they have a running track. For the first time since my ankle injury some 29 years ago or so I ran. I ran 900 m in three laps, and then ran a sprint race with my son of about 100 m. I used to be a long distance runner in high school and the feeling came right back to me as I felt the wind blow through my hair. It was exhilarating. Then this morning I went golfing with my buddies. No analgesia, no nothing – just fun.
That’s how my amputation has changed my life for the better.
Sandy J. Murray /SJM