My mother June was born in 1920 and lived to 1988. Raised by a very poor family – mother dropped out of school in 8th grade and began her adult life, she worked as a domestic before her marriage at age 17 to a local farmer. June’s AS started in her late teens after a nasty farm accident. She lived with no real treatment or anybody’s understanding, and as many of us so painfully know – anyone’s belief of the invisible monster that destroyed her body, stole her family and pounded her very soul daily. She was a hard working farm wife until the invisible pain and stress of no one understanding and lack of ANY relief or treatment forced her to divorce her husband, leave her children on the farm, and retreat to a sanatorium in the late 1940’s. After a time she was able to move across the country to be with her brothers and try to find a new life.
I was born in 1958 to a 38 year old single mother who was deathly afraid that I would be taken away by the government because of her affliction, our poverty, and the constant barrage of people telling her “nothing’s really wrong” – “you just need to relax” – “you bring this on yourself!” Mother’s AS was very active and very aggressive attacking her body and soul mercilessly her entire adult life. In the early 1960’s we lived on AFDC – as soon as I started 1st grade June went to work at factory labor jobs until she took full her full and hard earned SSI disability at age 58.
Mother’s entire adult life was very simple – make it to the next day. In the early 1970’s she was finally prescribed Indomethacin – the cost was astronomical; I remember as a child picking up her 10-14 day prescription, it cost $22, over a day’s wage at the time. June tried Prednisone but she could not tolerate it. Mom was absolutely driven to stay employed and no matter how hard it was for her she worked – hard! June came from a time and place that required everybody work to support themselves, or suffer even more societal disdain. Mother clearly felt the full weight of the world on her shoulders each and every minute of every day – there was no rest, no comfort, no peace and only brief glimmers of any joy.
June suffered a lifetime of AS and was entirely alone in her battle for understanding and compassion. I cannot imagine how hard things really where for her….raising a wild, confused, young man, all alone while struggling at the hardest core of bones life could give while working factory labor jobs with unrelenting AS. All while not truly understanding what was happening to her spine, neck, ribs, eyes, and heart – believing it resulted from that one terrible day in her teens or believing perhaps that it was God’s wrath. Imagine the fear.
Mom’s spine was fully fused by her early 40’s; she had heart, eye, lung, and intestinal complications. Her height went from 5’7” in her 20’s to about 4’ by the time of her death. Her sternum was severing her esophagus – her later years had her spine looking almost reptilian as it protruded from her skin. Yet though it all she never lost her dignity and had an amazing sense of humor. She earned everyone’s respect – her crippled pain riddled body was never able to steal her selfless heart and her iron will.
June’s life was one of unbelievable hardship and an example of human strength, resilience and courage of gargantuan – even mythic levels – non-AS people could never-ever understand the depth of her pain, the personal resolve, and strength of will it took for her to push through each and every day. I sincerely wish you all could have met her. Her memory is what carried me through my darkest years – yes her baby son; yours truly, also has AS.
My AS story is typical – from early teens on I had minor back and heel pain with occasional, but very noticeable hip pain, mysterious in that one day pain would be there, stick around for a few days, and then disappear. I first sought medical treatment at age 17 for hip pain but of course nothing was found. I grew into a very athletic and strong young man, by age 20 I was 5”10” and 215 hulking pounds of high energy muscle getting stronger every day.
In my early 20’s I started working as a Land Surveyor – I loved it! The strange “wake up” pain continued coming more often and getting worse – hitting very hard about age 22 to stay. The hip and low back pain became a very limiting issue, as strong as I was I could no longer simply push through it. I had a HMO clinic that was not proactive and when I would walk in looking every bit the football player complaining of back and hip pain they would do x-rays, poke around and then send me to an orthopedic and/or physical therapist – that would be the end of it. This went on for four very frustrating years, hip and back pain had been part of my life for over 10 years by now – but the last few had been devastatingly painful and frustrating. Appointment after appointment with doctors finding nothing and physical therapists eventually giving up or saying I was after drugs or needed to see a shrink. I did not connect my mother’s “injury” to my pain issues nor did I think to mention her condition to the doctors.
I went to the U of M hospital one sunny afternoon in 1984. I was finally diagnosed with x-rays (sciatic and lumber fusion was very evident by age 26), a nuclear bone scan and blood tests (HLA b-27 positive). When I first heard the words Ankylosing Spondylitis and its description, because of my mother’s very severe and advanced condition I knew instantly the cards I had been dealt – my soul was absolutely flattened. My God! I thought, I will suffer terribly and end up like my mother – at the time I would have rather been told I had cancer, not only would friends and my employer understand the seriousness of my battle, but it would be a battle that would be won or lost, not a losing battle fought alone and misunderstood every single day for the rest of my life. I had no doubt I did not carry mothers courage or her strength. I was very afraid of my new future; I had grown up seeing firsthand the pain and crippling loss suffered by the body and the loneliness, immense stress and daily assault AS bombards on one’s soul.
Treatment options were limited at my mid-1980’s beginning, yet I fought this AS beast with everything I could find. Education, Exercise, Naturopathic means, Alternative methods, Chiropractic (DON’T!), and Traditional medicine. But as hard as I fought I was not finding much relief and things got much – much worse, it seemed I would indeed suffer my mother’s fate. I was in severe pain for months on end with no relief, sleep or hope. The months of unrelenting pain and fatigue grew into years. My sed rates would spike over 125; I was once bedridden for an entire Minnesota summer and couldn’t walk a city block for years. I still engaged in my passion of motorcycle riding, abet in a very limited way, it was the one thing that could inspire me to somehow push through pain when I didn’t think I could any longer. I was very lucky to maintain my employment with transfers and retraining that ultimately took me to a desk job, but I had no expectations that I could for long avoid full disability.
New drugs started to come out and I visited a very passionate Rheumatologist at the Mayo Clinic – he prescribed Sulfasalazine one of the first disease modifying drugs available and it really helped. With Sulfasalazine and heavy Prednisone use my mainstays – I was hanging on and had real hope that better drugs would come along. As a prime age patient with very active AS I was in line for most any new drug that came out from the late 1980’s on. I did not respond well to most (MTX, Imuran, etc.), but Vioxx was a big help and when the TNF blockers came into being I was near 1st in line.
I am very blessed and may well be the Remicade poster child – I started Remicade in 2001 and responded better than I could have ever imagined. After ten years I still receive tremendous relief with no side-effects to date. At age 53 I am living a happy, full and nearly pain free life – a life that I would have never imagined in my late 20’s, 30’s or early 40’s. AS has run the course and fused my spine, ribs, neck, and more, yet I am blessed – I know well how very lucky I am to have not suffered my mother’s terrible fate. Please hold on to hope – the future has never been brighter for people with AS. With the available peer support, awareness efforts, and of course new medications provide AS sufferers with much better understanding, support and meaningful treatment options than existed just a half generation ago.
I have a much more detailed story of both my mothers and my path called A Blessed Man’s Journey – Lessons Learned Traveling the Road with Ankylosing Spondylitis which can be read at http://www.hopeandapples.com/?page_id=293 Hope and Apples is a wonderful blog of AS related stories and art work from around the world put together by a very talented AS warrior.
May your path be filled with effective treatments and your heart be able to hold onto life’s precious gifts of love, joy, and peace.
Centerville Minnesota United States of America