An AS Life “A Blessed Man’s Journey”

A Blessed Man’s Journey

Lessons learned traveling the road with Ankylosing Spondylitis

By Jim Weatherhead

Introduction – The following story has taken on a much bigger life than was my original intent, that of a simple personal story of the AS treatments received and their results.  It grew into a story of two AS lifetimes.  Given freely, please understand it’s only two of literally millions of AS stories being lived out every day.  The story is factual, yet riddled with opinion and one person’s point of view.  It’s disjointed chronologically.  Feel free to ask questions or comment, I share this story hoping only to lend a ray of hope or simply pass on some emotional validation to one in the thralls of active AS. 

 

Dedicated to my wife Susan, the unwavering rock at my side.

 

April 17 – 8:05 am

I woke this morning fifty two years to the minute from the beginning of my life, a life that has been impacted by Ankylosing Spondylitis (AS) since birth – every single day of my fifty-two years has had AS squarely in my face. I now feel it’s time to write my personal story that has been bouncing around my melon ever since I stumbled into the AS awareness project on Facebook.

 

My first actual awareness of AS, even though I had no concept of chronic disease, was that of a three year old boy walking with my forty-one year old single mother.  We would walk through beautiful Sibley Park, in Minnesota where strong rivers meet; mother would often find cash prizes in the soft lush grass.   That’s when I first became aware that my mother, June, always walked with her head down, how cool I thought it was that she would often find valuable surprises.  As a child I marveled at her luck!

 

What I know about my family’s AS history is that my Great Grandfather, a first born American of Irish descent had a condition called Sciatic Rheumatism.  This term was used in his Civil War medical disability papers; recorded as he was injured at the battle of Baton Rouge.  Family oral history confirms a life of back pain and a limited ability to be prosperous in his work, first as a farmer and later as a carpenter.

 

The next known AS was that of my mother, a woman born at the beginning of the roaring twenties only to come of age during the great depression.  Her parents divorced when she was very young; mom’s dad, son of the Civil War vet, abandoned the family and went to Oregon.  Mom’s mother stayed in southern Minnesota, raising her and her two sisters and two brothers.  My Grandmother was of German descent and suffered from rheumatoid arthritis – mom’s challenges were deeply rooted, mom had little chance of a life free of physical challenge.  Other auto-immune/inflammatory issues have bounced around the family and have significantly impacted a cousin of my generation, and likely one of my Uncles (not the father of the cousin) but no other AS is known or currently blooming.  I have no children; my hope is that the AS will die with me.

 

As a young girl my mother would hop a freight train to a neighboring town working as domestic help for some of the few people of means that remained in the area.  Mom left school at 12 to begin working; she “had no shoes to wear to school”, it was a hard scrabble childhood.  She was a star softball pitcher with the local women’s town team, her brief taste of glory days.  She was married at 17 to a local farmer and excitedly took her place on the extended family farm.  She started her own family with two girls and a boy quickly born – my much older half siblings, none suffer from AS, although my oldest sister was killed at 15 in a car crash and “may have been prone” (?) according to mom.

 

At age nineteen, mother had a farm accident that left her body hanging from the barn rafters trapped by her foot; she hung like this for many hours waiting for help to arrive.  In her recollections, the aftermath of this severe accident was the beginnings of her AS.  Mom did not understand until very late in her life that she had a disease – she always described herself as having had “all the ligaments stripped out of my back” by injury.  She simply did not understand her condition as chronic disease – it was thought back then that women didn’t get AS, (and yet today this ridiculous notion remains still) mom was so very frustrated – doctors would condescendingly say to her “it was just an old injury – all this pain must be in your head – there’s nothing really wrong – “you just need to relax”, this, even after the fusing of her spine was clearly obvious.  The doctors where, without exception, unable to understand how much deep physical pain she suffered and how hard she pushed herself to fulfill the unyielding duties of a nineteen forties farm wife.

 

Mother divorced and left her young children on the farm.  The pressures of undiagnosed AS combined with the resulting family dysfunction lead to this move of self-preserving desperation.  As you may imagine this is a deep wound that never healed.  Mom went to a local sanitarium to try and deal with the physical pain and emotional strain of AS.  After a time she became a waitress at a local nightclub and I suspect went through a self medicating phase to try and deal with the unrelenting physical and mental stress of living with constant pain in the form of undiagnosed AS.

 

Mother, as with virtually all people I’ve met or shared thoughts with that are afflicted by AS are driven and motivated people – desire or strength is not the problem.  The mental strain of not being able to fulfill one’s desires of life and contribution are among the toughest issues people with AS face.  Early on, the frustration of the invisible intense physical pain and loss of physical ability of this hideous soul stealer that is AS often becomes absolutely overwhelming.  In my case, at least, the constant and intense physical pain, while unbelievably extreme, was actually secondary to the mental strain of the daily uncertainties and the slow and unrelenting loss of cherished physical ability.  Then adding in the marginalizing altitudes of well-meaning co-workers, family and friends – “You don’t look sick – there’s no swelling – I don’t see anything – everybody gets stiff and sore – can’t be that bad – another day off?”  I cannot imagine how extremely insane life would have been without understanding what was really wrong as was my mother’s case for the many long years of terrible inflammation and pain she suffered.  People often wait years to get a proper AS diagnosis, but typically it’s not a lifetime as was my mother’s case.

 

Mom got her bearings and an opportunity to go out to Oregon to be with her brothers, who both relocated on the Pacific coast reconnecting with their farther after serving in WWII.  Mom was suffering the painful trauma of undiagnosed AS, but had resumed life and had dreams of a future.  I do not know much about this period, other than she worked as migrant farm labor and also at a tavern where she meet my Native American father.  Mom was proud of saying she was “the only white person on the bus” and felt more love and support from her fellow migrant work crew than all the doctors and preachers she had consulted, they believed her, they could see her extraordinary resolve.  Mom was very thankful of the support she got from people she worked the fields with in Oregon; I think the experience may have saved her soul and rekindled, at least to some extent, her faith in life while giving her purpose.

 

I was conceived in Oregon, unplanned I assume, or perhaps even as self administered AS treatment, whatever the actual case, I had the full focus of a very loving mother that would do everything to raise me well and to not have me taken away and declared  unfit, which was an intense fear that mom always carried.  Mom came back to Minnesota to raise me – her mother and her other children were in Minnesota, and I don’t think she wanted, for whatever reason, my father in our lives.  Mom was not a big fan of men, too much AS related heartache over the stress of relationships, I assume.  I do not know who my father was, nor do I believe he ever learned of my birth…so it goes.

 

After my birth we lived on at a rural retirement home in southern Minnesota, mom was the live in cook, talk about early influences.  It is here I first saw death, illness and spiritual loss all at a very young age, yet I also witnessed deeply spiritual and unrestrained love given in unselfish service to others.  And whiskey and cigars where for the fun men out behind the chicken coop!  When I started school mom took a job at a poultry processing plant and we moved in with my older sister and husband on their farm, later we moved to my mother’s hometown where I was raised from 1st grade on.  Mom was still well known on this small town (pop. 1500) and that was both a blessing and a curse.  Mom and I, living and supporting ourselves independently, where harshly judged by some, but also well supported by many others…the typical story of a small rural town.  Shameless Minnesota movie plug – Sweetland – the story of a woman’s life well lived surrounded by community bigotry.

 

This idyllic rural town would be the perfect place to learn life’s lessons.  There was no hiding who you where, what you did, or how you handled it.  While many people flee the open life required to live in this type of environment, myself included.  The people you must learn to live with is like a big city in depth, devoid of racial diversity perhaps, but not of personality type, intensely magnified by the complete lack of anonymity. There are few secrets, life must be dealt with – nobody can hide.   A small town life gives one a great opportunity to learn real character; the moral and ethical strength to always do the proper thing, to take responsibility for self regardless of personal cost or potential reward.

 

The mother I knew usually carried a smile and quick humor, didn’t complain publicly of her pain and suffering and lived with unconditional love for me.  She worked oh so very hard, even taking her vacation from various factory jobs to work the seasonal “corn pack” to earn extra money.  Mom gave of herself freely and asked nothing in return…in fact she was stubbornly unwilling to ask for help or any form of charity.  We were of very limited means, but lived well.

 

At one time we lived in a house without plumbing and as a small child I carried heating oil on a little red wagon. I can remember our first TV, old and well used; mom bought it to see the JFK funeral.  I remember a neighbor that would bring us government commodities (cheese and dry milk) despite June’s strenuous objections; I would tell mom I loved the clumpy milk.  I had pigeons as a childhood pet, some became dinner.  In one house we rented we had a wood fired cooking stove.  It was a better childhood in many ways than it sounds or could be imagined – simple, honest and well grounded.

 

Throughout my childhood mom always worked very hard to raise our standard of living – and despite very active AS succeeded amazingly well.  June’s drive to give me a good childhood was clearly heroic, as was her long battle to live with severe AS.  Mom was very basic in her outlook on life and the life lesson she would bestow on me was to always accept responsibility for your actions, be honest, and work hard, certainly a solid foundation for my future, well laid by her unwavering example.

 

I was a fat little momma’s boy that grew up very fast; I began to take responsibility for myself and started working as soon as I could, I was 11, maybe 12, I bought mom a reclining chair that she often sleep in and treasured to her last days.  I remember how proud she was that I would do that for her at such a young age, of course I did not understood how important it really was for her – a comfortable place, a refuge to relax in.  Didn’t seem like a big deal to this healthy, active child that wanted a nice recliner for his own fat butt.  Yet for one intensely suffering from AS a comfortable chair can be everything.  At fifteen I bought our very first family car with money I earned by contracting with a local seed company to detassle corn.  Mom hadn’t driven an auto in many years, I was honestly surprised that she could drive, but she regained her driver’s license to enable me to learn to drive.  Taking up driving again really helped Mom regain a real social life and she drove on her own for many more years.

 

Mom gave her absolute all that I might have a good life.  Yet, she was not very supportive of my athletic or educational aspirations; she simply did not understand the way out of poverty was an education.  She was always very fearful I would get hurt if I played sports and constantly pleaded with me to stop when I did.  She believed collage was a waste of time “those people don’t know how to work”!  As essentially an A student with above average athletic abilities, this limiting attitude was very frustrating for me and a point of much contention and strife between us, combined with the rage I carried by not knowing who my father was we had some very difficult years as I grew up.  At first I turned to the outdoors for solace, fishing, hunting and trapping became my escape, later I turned to high speed adrenaline rushes, drugs and alcohol to numb the rage.  I was pretty well accepted across the high school cliques of the day – brains, motorheads, farmers, jocks, and stoners, variety is the spice of life and as teen I had some great times, even as an emotionally troubled young man.   Like many that grew up during the wild and wide open 70’s I was lucky to survive all the fun.

 

The WW2 generation was still the conscience of my hometown, a generation that well understood personal sacrifice and civic responsibility was the common cause that connected and lifted us all.  The men of this generation had a very positive influence on my impressionable teen years; many would pull me aside and try to impart wisdom on this troubled teen running fast and hard to independence while lacking any healthy direction.   The good men of this town became my father, a better father than many kids had.  I was often told I had a great attitude and real potential, the shame was I couldn’t see it or worse believe it myself.

 

When I finally understood the depth of mom’s physical and mental pain – combined with her limited understanding of her condition – the self imposed limitations and fear based attitude made perfect sense.  Unfortunately this knowledge came to me much too late to help us while I was a teen.  Even seeing her pain, her crippled body, and her undeniable heroic efforts on a daily basis I simply had no clue as to the depths of the stress, desperation and despair she had to constantly overcome to simply make it through each day.  As a teen, even I sometimes questioned her depth of physical pain, her resolve, and even sanity, something I would give anything to be able to take back.  June was always very paranoid and suspicious of the educated and inspired that used big words and talked of the future or of hope – her simple desire, her simple goal was to just make it to the next day and be left alone to rest and suffer in peace without having to listen to people constantly telling her what she needed to do to get better.

 

As I said before, I grew up fast, my mother’s AS, specifically a monster flare she had when I was seventeen had us facing homelessness.  Combined with my lifestyle of a full blown motor head, drugs and rock and roll – we (I) needed money – so I quit high school a couple months into my senior year (no early graduation plan was available) to help support us.  It was time to grow up.  At age seventeen I was working twelve hour nights at a printing company making decent money while throwing mail sacks filled with magazines.  I was building on an already very athletic and strong body.  I was physically ripped, overflowing with power and energy.  Yet, this is when I started to have more routine and very nasty pain in my hips and sometimes heels first seeking medical treatment for hip pain.  My first AS symptoms became a very noticeable issue about the time of my golden (17) birthday, although I did have occasional and severe hip pain issues as early as age 12 or 13.

I worked up the company food chain fast; at 19 years old I was a magazine binding machine operator in charge of a crew of up to 40 people.  I worked hard, played hard and was having a blast – sort-of.  Then one night I had an epiphany on my way to another 65 hour week.  Yes, this may be one of the best blue collar jobs around, mom was very proud, but this can’t be it! I cannot do this for a lifetime or even another day, I cannot let this be my life.  I had been trying to get the company to send me to school on a program they had for graphic design, they were unwilling, “to valuable” where I was, so I simply walked – no I ran out.  I jumped my feared abyss – the abyss of a life of poverty and little opportunity to the unknown.  I dreamed of being an architect and ended my printing company career that very day – I would not let myself look back.

 

Mom was devastated – she screamed at me “you’ve just quit the best job you’re ever going to have!”  I let that roll off and went to Texas to party for a few weeks with friends, I was unemployed for essentially the first time since I was twelve – I needed to space myself from mom and her AS to find a way forward.  I was now starting to get my own taste of AS a little more often and a little more severe.  I remember waking up on the beach on North Padre Island one morning absolutely unable to put weight on a heel due to unbelievable pain, my hips screamed out; I could barely stand or walk.  I simply assumed it was too much sleeping on the sand and playing Frisbee on the beach.  I would be fine one day then the next unable to walk without a very painful limp, these severe mystery pains came more and more often, but would only last for a few days and leave.  I didn’t let it show and minimized my pain, I would simply try to ignore it and walk it off.  I was a tough guy; I wore a hard armor and never let “weakness” show.  I headed back to Minnesota intent to find a fun, physical outdoor job and make my way towards a better life and education than that of a high school dropout.

 

Mom was doing better by now; she had gotten on SS disability and was living comfortably for perhaps the first time in her life.  She could rest.  I felt that I could finally get on with my own life and not have to worry so much about mom.  AS had crippled her terribly, but she was living well, even though a lifetime of AS complications and residual pain persisted she seemed to be enjoying life more than ever.  I took her on a nice retirement vacation to see the Atlantic Ocean, it was about the only thing she ever said she really wanted to do.  Her last ten years may have been her best, that’s not to say AS didn’t affect her to the very end; it just didn’t seem to be as intensely painful as it had been for oh so many years.  AS had run its course – there was little left to inflame or further cripple.  The rheumatologist that processed her SS disability was absolutely dumbfounded that she was still working a labor job and had spent a lifetime doing physical labor up to age 58.

 

 

The extent of her lifelong treatments included massage by a woman she worked with in Oregon, lots of over the counter pain meds (Aspirin), a little yellow pill that was either a NSAID or “mothers little helper” (I don’t know), Indomethacin and Prednisolone, although she could not tolerate the Prednisolone and only took it a few years while I was a young teen.  Mom did not have any surgical work done, other than a gall bladder surgery at age 44.

 

One thing she did that I am absolutely sure was very counter-productive is that she would sit on the edge of the sofa, that also served as her bed, and hang her head and pull forward to stretch her back.  I strongly believe this method of traction pulled her posture considerably over.  I now understand what she was going for – spreading and stretching the vertebra to ease the pain, but this attempt to get relief was ultimately devastating to her overall posture.  The level of her AS inflammation, limited treatment options, and her labor based work was clearly the reason she needed to try and find relief in this manner, simply stated, she had to do something, anything to ease her pain to try and rest.  As most reading this will understand, sleep came very hard, if at all.

 

Mom did not drink enough alcohol to mention as I grew up, but she had a nasty cigarette habit that ultimately sealed her fate.  Her entire spine, neck, and rib cage where fully fused (and had been for many years) she was so far bent over that her sternum was severing her esophagus, her height went from 5’7” to well under 5’ by her late 40’s and dropping to 4’ (this is no exaggeration!) by the end of her life.  She also had a couple very nasty runs of Iritis and lost considerable vision late in life.  It’s hard to describe just how completely devastated her physical body really was, yet she always maintained a sense of humor and can-do spirit.  Having seen this progression as I grew up and became an adult, I have never NOT understood just how bad AS has the potential to impact the body if not treated and actively managed.  There can be no days off in our treatment and management endeavors.

 

Mom had no time for organized religion, but I think it’s safe to say was at peace with God by the time of her death…this is significant; because during her life she seemed to believe she was being, for some reason, punished by God.  She lived in terrible fear.  Mothers life with AS was unrelentingly painful and unimaginably hard, yet mom carried herself in a quiet, dignified, and unassuming way.  She showed courage beyond belief and lived to simply make it to the next day for many, many years.

 

She did learn of my AS diagnosis and that was a terrible heartbreak for her.  Mom died peacefully in 1988 at the age of 68, she was not afraid.  We all felt blessed that it was fast and she did not suffer the indignity of not being able to live on her own.  When she got so very sick at the end (from lung cancer that she hide from us all – it was Junes way) I picked her up at her home to have her stay with my wife and I not knowing her terminal condition, mom took a last look at her perfect little cottage that she loved then turned away and said “I’m ready”.  June knew she would not be coming back and died about two weeks later.

 

When I pressed very hard about who my father was she simply pointed to the sky and said, “you know”  in all honesty, that was the best answer she could muster and I took it to heart, I found my own path to forgiveness, pointed out to me by the person who loved me most.  From those simple words I came to understand I was the person I would have to forgive…not for who I was, but for who I wasn’t.

 

“I know of no more encouraging fact than the unquestionable ability of man to elevate his life by conscious endeavor” … Henry David Thoreau

 

I had found a lumber yard after leaving the printing company doing carpentry work and started to evaluate future educational options.  I truly loved this job, yet couldn’t see a viable future and wanted more.  This was a financially strapped small town lumber yard that did it all to try and hang on in the face of the emerging big box world.  One day a land surveyor handed me his bill and for his brief time on the job site, he was getting very well paid.  I saw my future.  An artful, historic craft with lots of variety – I loved math and drafting, adding in the outdoor work using cool tools sealed the deal – what a great gig!

 

A couple weeks later I had a part-time job at a gas station and was starting a one year Vo-Tech course to become a civil engineering technician with a focus on land surveying.  Ah, the collage town life!  It was a much needed breath of fresh air.  I was surrounded by intelligent, motivated and fun people with good attitudes working towards positive lives, very heady stuff for me at the time.  I was no longer “June’s boy”, but my own person – free from my hometown and perceived station in life.  I felt great, this was easy living, I was mining for a heart of gold and I could imagine, for the first time a wonderful life ahead of me.  Music has always been my spirit muse, my light of truth, never more so than during this period of my life.  Life’s deep truths can be learned in many ways, all one needs to do is listen to that small voice that feels truth, which knows pure and selfless motives.

 

AS started to present itself much deeper after some brutal football games that I played in while in Vo-Tech, I would run the ball hard, so hard that I would often carry multiple tacklers and could see the fear in player’s eyes as they came in to try and tackle me – I hit back! At 5’ 10” and a very solid 215lbs I loved the physical challenge of football.  I gave my all on every play without pads, pick-up game or organized game, mattered not.  Trouble was, after a game I could barely get up out of bed the next day and it would be three or four days until I could walk without significant all-over body pain.  Funny thing was I simply thought that was the price you paid to excel, when playing football I gave my absolute all and always looked forward to the next game.

 

After graduating Vo-tech I took a job as a land surveying technician with the State of Minnesota, I was offered a great educational opportunity and jumped at the chance to attend the University of Minnesota.  I was on my way, growing physically and mentally stronger every day, I was working hard and felt really challenged in every aspect of my life, I loved having to push myself in school for the first time in my life, until I got to the U academics had been too easy.  My plan was to pursue a civil engineering major with an architectural minor, worked out well for Frank Lloyd Wright.  I dreamed a life of creative endeavors rooted in engineering.  Night school and winter quarter day class’s became my focus, I worked full time as a construction surveyor and went to school part time.  I was shining bright at work and in school.

 

I got my first “real” motorcycle, a red Norton.  I meet my future wife.  AS had been lurking, showing itself, but had yet to fully present.  I had occasional mystery days of hip and heel pain, a very hard time recovering from certain activities, but nothing that was so bad that I couldn’t push through it.  Yet.  I was in my very early 20’s in love and on my way to a fun, fabulous, and rewarding life.  Change was on the horizon and it showed up, for life, nearly overnight.

 

It was the land surveying abilities that were first challenged, I got to the point that I could not be counted on to show up each day.  One day or week or month I’d walk for miles, carry instruments, and pound 100’s of stakes – then one day or week I could barely get out of bed due to back pain and terrible stiffness, hardly able to walk at all because of severe and burning hip pain.  I started to drink more and smoke lots of weed to numb the intense frustrations.  My employer was having a hard time with my unexplainable and sporadic performance.  I was losing my focus in school and finally decided to take some time off class work to simplify my life, find a way to regain my health and save my job.  I volunteered for full time office duty, drafting base maps, property plats, doing survey computations and doing automation development.  My hips got worse; my low back became fully involved, sitting seemed to make things worse – much worse!  I asked to go back into the field in the middle of winter which confused my employer even more.  I was in growing pain and it was near impossible to work productively and live with joy.  I could not find out why…I knew I was giving and doing my best…what is happening?

 

I had one of the new and emerging HMO clinics and stated going to doctors in earnest. They were not finding anything…typically the word I’d get was “bursitis” or there’s “nothing wrong”.  One HMO Doctor frustratingly said that I was just out of shape!  In actuality I was in excellent physical condition, but on many occasions absolutely crippled with low back and hip pain – “no something is clearly wrong here,” I screamed in reply, “look at me for Christ sake, I can bench 250 lbs and do a back flip from a standstill” – F U! Open your damn eyes!”- This was the first time I totally and completely lost it due to AS.  I was so frustrated – a strong athletic unbreakable machine one day and then a limping cripple seared with pain the next with no rhyme or reason for the sudden change… am I losing it mentally?  What is happening?

 

The HMO doctors sent me to orthopedic specialists but never a rheumatologist and I didn’t connect my mother’s issues, her injury, to my problem – subconsciously I couldn’t.  I changed health plans and went to the U of M hospital.  The primary worked me up and sent me to a rheumatologist immediately, in a few hours the rheumatologist had the diagnoses, after three years of desperately (and actively many years longer) trying to get an answer.  I still can remember peeking around the corner of a curtain to see my nuclear bone scan hanging on the light box and seeing my back pain in picture for the first time, my pelvis and hips where lit up like the base of a Christmas tree and my spine it’s trunk.  I was ecstatic.  Yes that’s it!  What is it?  More importantly – what can I do to get rid of it?

 

The rheumatologist somberly came back into the room; I sensed this wasn’t going to be good news, first thinking “bone” cancer, what else could hurt so terrible?  That’s when I actually first heard the words Ankylosing Spondylitis, she pointed to the scared hip joints, the fusing lumbar spine and the already fully fused sciatic joints – it was like a being run over by a Mack truck.  The room spun violently and instantly I fully understood what my mother really had and now I had it too.  It was a perfect Minnesota summer day, I walked out of the U of M hospital in 1984 alone and devastated, my only thought being I’m going to end up like my mother – my great life is over.  I was emotionally crushed, as I got out of the building the tears flowed, happy because I finally knew the truth, yet overwhelmed by the answer, a very visual answer that had been in front of me my entire life.  I got drunk!  The next weeks where devastating as I tried to find a way to come to terms with this new reality.  I found my strength and resolved to take charge and beat it.  Incurable!  I’ll show them!  I’m intelligent, strong, and motivated – now that I know my battle I can beat this…In other words I’d go with the denial approach.

 

My AS treatment path began in earnest, I was prescribed Non-Steroidal Anti-Inflammatory Drugs (NSAID’s), I went to chiropractors, this was a mistake I’ll touch on later, I got massages (always good, I don’t care who you are) I started to take nutrition very seriously, not new to me, but now clearly more important.  I started a full vegetarian low-starch diet, and then I would simply fast as much as possible to avoid potential food reactions, then food test my way back to eating to have pure results to evaluate.  I did accuputure, took up yoga, swam, did lots miles on a bicycle to keep the hips moving.  In the end I have come to believe that yes, all of these things (except chiropractors) can and will of course help, but if you have active and severe AS it’s simply a drop of rain in a raging river of flame.

 

My resolve to fight this disease was strong, my commitment unwavering, yet there was little more to do via naturopathic means.  In fact I think the self-guilt of not doing; especially when you can hardy make it to the next day is spiritually damaging and may work against a severely afflicted persons long term resolve.   It’s absolutely imperative to focus and include long term healthy lifestyle approaches.  However – with active AS over-extending naturopathic or physical fanaticism can and will cause deeper inflammation and potentially severe and permanent damage.  I can attest to this fact, adding that rest is paramount to a long term quality of life, of course always balanced with healthy exercise and a sound balanced diet.

 

One needs to understand, and all will in time, that there is no magic potion that will cure AS, slow it, and help minimize it, perhaps to a degree, but naturopathic means will not cure it or truly hold at bay severe and active AS.  AS is a lifelong battle that needs to be fought with a long term strategy that acknowledges the potential of the severe and crippling effects and tries to not focus on simply the day to day pain but seeks to minimize the long term damage from ongoing inflammation.  Easy to say, but near impossible to do… PLEASE, just make it STOP is where we live much of the time – especially during the intense flare-ups.  AS a big league disease that can quickly cripple the body, try what you must, but in the end I sincerely believe you will learn that modern, evidential medicine is your best option to effectively pound down the inflammation over the long haul while providing the best possible prognosis.

 

The biggest positive at this point, besides knowing what I was fighting, was that after years of actively trying to find the cause of my hip and back pain and doing tons of research I had allot of exercise and diet strategies to work with. I was in denial, but not uneducated about the disease and treatment methodologies.  I was extremely fortunate to be very athletic; my weight was good, my strength, posture, and overall flexibility was great, my outlook held as naturally positive.  I felt strong and reasonability confident I could handle the future, lord knows this positive starting point helped me to survive the brutal, crippling and angry years still lurking on the horizon.

 

I decided that work would have to be a focus – school was over for me, I was not going to sit still any more than absolutely necessary, nor add academic performance stress – my future, my success, my life goals, had a whole new meaning.  I would focus on keeping as physically active as possible to save off the effects of AS.

 

I would have fun, I would contribute, I would love life, and I would not be helpless.

 

I was able to move into a seasonal job that gave me two months off per year and allowed me to work both in the field and office pretty much as I chose.  I had a great, even if somewhat flawed reputation at work and upper staff worked with me to accommodate my growing, now identified, physical limitations.  I moved to traffic control design, work zone staging and field inspections; it was challenging and gave me the physical flexibility I needed.

 

I took up motorcycle roadracing in earnest.  I was going to chase my dreams while I could.  I traded in my Norton on a brand new Ducati 900ss and went for it (I actually did this part before I was formally diagnosed, but ramped up the racing afterwards).  I did have one hard, high speed crash that may well have been a factor in my future with AS, but at the time I seemed uninjured.  I was no “Kenny Roberts”, but I worked hard to get better, attended racing schools and did as many laps as I could, at times I was hardly able to get on the bike due to pain, but the adrenaline rush of going fast would help push the pain into the background – at least while on the track.  After three years I won a regional club race and stood on the box a few times.  Despite the limitations and frustrations caused by AS these where great days as I got to share race tracks with some of the fastest guys in the country.  We had a blast, did some traveling, rode some great tracks, I made many friends and managed to race for about five years as finances and health allowed.

 

I hung the leathers up because I had to, of course this insidious disease never leaves us and the time had come to focus on a dream that I could actually live.  I was in terrible pain; the 1980’s would be my decade of physical loss and PAIN!  By 1988 I was in severe pain virtually all the time, things had gotten really bad with intense foot involvement, constant low and mid back problems, my sternum was getting into the act, as was my upper back.  My hips where virtually shot, I had so much hip pain those first years after my diagnosis I have no words to describe it.  I would sit at the top of a staircase and stretch my hip flexor muscles for hours every night, it was my only way to any type of hip pain relief, temporary, but some relief none the less.  I remember many sleepless nights standing next to a radiator as I was absolutely unable to lie in bed due to hip pain, getting burned by the heat – a welcome distraction that took the focus off my screaming hips.

 

I was very slow to ramp up the prescription drug treatments and generally rheumatologists moved slow back in these days, I was, and still am, a very committed Mr. Natural type guy.  I was careful about what I ate; I went with a balanced diet of raw foods, limited dairy, limited starch, no nightshade plants, limited meats, volunteered at a CoOp grocery to learn more about foods and did lots of experimenting in the kitchen.  I flirted with a complex macrobiotic diet.  To this point I had been using only NSAID’s sparingly combined with holistic approaches with foods, massage, acupuncture, meditation, visualization and dietary supplements like flax seed and cod liver oil – yum, yum.  I also was very committed to routine exercise, with lots of bicycling, swimming and yoga.

 

OK, my take on standard issue chiropractors – stay away!  The trouble is that if you are undiagnosed as I was at first and seeking help bad things may happen with chiropractors and it’s not likely that you (or they) will understand why.  They become inflammation starters and bone breakers.  I had my fused sciatic joints “broke” open by an old school chiropractor (before diagnosis) which ultimately spun my inflammation and deep seated pain to all new levels.  However, I do have a deep appreciation for the holistic chiropractic healer, (after diagnosed) who through gentle spine massage and breath work showed me how to breathe into my spine to relieve the pent up tension of the tendons and ligaments to the point of being able to do self posture corrections while lying on my back in a firm wave-less waterbed.  So not all is bad with chiropractors, it’s just that very few understand how to treat incurable auto immune/inflammation disease.  I firmly believe the spinal manipulations that are actually beneficial can and should be done by using one’s own breath, not by external physical manipulation.

 

A young inexperienced chiropractor built some custom orthotics that opened up a monster can of whoop ass on my feet.  I spent years trying to recover from a few days of having my feet manipulated in an attempt to help my spine.  Be very careful – I don’t think a responsible heath provider would ever consider this type of treatment when a chronic inflammation condition is known, but of course that is an early diagnosis problem.  I had to do corrective surgeries years later as a result of those few days, not to mention suffering years of intense foot pain and permanent structural foot damage.  This experience is an example of why AS awareness is so very important, not only to get as early of diagnosis as possible; also that health providers  understand AS is inflammation, not mechanics or physical conditioning, it’s the body attacking itself.

 

AS is clearly documented as a disease of unknown absolutes, although many commonalities exist, a wide range of impacts and severity levels, often very different to each individual may result.  My own instincts tell me it’s a genetic susceptibility (well documented of course) combined with cumulative or sudden trauma, and/or emotional trauma as potential triggers with some type of secondary trigger such as fungus, virus or an environmental reaction.

 

 

I have come to believe that the laws of nature are the root cause of AS, nothing more.  It’s not personal, it’s not Gods wraith, it simply the result of a complex human biology and natures many unknown laws of reaction and evolution.  Simply part of the great human paradox, we are all the exactly the same at the root, yet each vastly different at the leaf.

 

I decided that I would have to give up drinking, which I did in 1987, alcohol is a chemical depressant and with AS that is not, in any way, true help – period.  The mental and physical damage that is often inflicted by this form of self medication far outweighs the phony and temporary relief.  If one is truly committed to live a productive life with AS a positive attitude and a healthy lifestyle is everything, alcohol has no medicinal value in this pursuit.   Any significant alcohol use will certainly make life with AS much harder in the long run; starting by magnifying drug interactions or reducing drug effectiveness and likely ending in a long slow slide into hopeless depression.  I decided that absolute abstinence was my only option, no sips of wine for me, simply too easy for me to get carried away.

 

I discovered the wonder and contradiction that is Prednisolone (aka Satan’s tic-tacs) when my feet got so bad, it was startling to barely be able amble in the doc’s office in the afternoon and the next morning after 60mgs of juice feel great.  I was on Prednisolone for at least 20 years starting about 1986.  My dose would range between 5 mgs and 80 mgs…I would say an average dose was 10 – 15 mgs for the 20 year duration.  Amazingly I tolerated this drug very well, I had some early intensity problems but realized what was going on and understood well the count to ten concept, although opinions likely vary on my actual ability to do so. My bone density tests to this day are amazingly good and other than weight gain and scaring on my arms and legs from poor healing wounds (insect bites, etc.) I’m fine.

 

I visited a few different rheumatologists during these early years and had gold salts prescribed but would not take them, I filled the prescription, but when I read the clinical name ridaura I could not take it – thought I better try and on to hang on to my aura.  I was aware that gold salts where essentially a poison to kill nerve sensation – often damaging the heart in the process.  I firmly believe that not taking this drug may have been one of my best decisions along the long winding river I’ve paddled with AS.

 

Rheumatologists did not have much to offer short of NSAID, Prednisone and gold salts back them.  I was now starting to give in and routinely took high doses of Prednisolone and had tried all the various NSAID’s, with Indomethacin extended release being the most effective for me.  My future looked to be a lifetime of pain and physical loss – I was fighting hard, staying positive, but bleakness would often creep in during the long painful and sleepless nights.  I could see my future through my mother’s life; I was very scared, I felt very alone, I was becoming angrier, even with my wife’s loving and indispensable support.

 

I spent time under the care of an osteopath/homeopath in the late 80’s.  This treatment approach with deep tissue/muscle massage and a like based medicinal sulfur concoction took me to new heights of flare.  I was essentially bedridden for three months, maybe more, in so much physical and mental pain it was unbelievable, every single joint in my body, save my hands, were involved and flared at this point.  Each day was a nightmare that never ended, each night a trip through a flaming hell that wouldn’t cool and each new dawn was simply the beginning of another intense nightmare.

 

As we AS sufferers know, the frustration of personal relationships become very hard with the intense, yet invisible 24/7 pain and the complete unpredictability of when and to what extent it’s possible to join in socially.  This issue became a growing source of loss for me and I became more and more reclusive and frustrated socially.   I tried to explain how bad things where for me, a few people seemed to understand, but most seemed to insinuate that I was, for reasons I could never fathom, faking it or being aloof.

“Mind over matter” “I know a guy that …” “Just relax” “You need to see a specialist”  “Everybody gets stiff and sore” “Just do it” “Exercise more – No pain no gain” – I really hate that one!  The condescending ignorance really cut deeply, especially from those who knew well my mother’s life and seemed would have some insight to what I faced.  Ultimately I tried to quit explaining things and just suffered in silence, it seemed the harder I tried to explain the disease the less people understood or believed my pain.

 

I have come to understand that nobody can really get their head around unrelenting severe pain and the associated fatigue and frustrations without experiencing it.  You just wished people could simply accept that we do our best everyday and understand, no believe,  we are dealing with more physical pain than they can possibly imagine, a broken leg heals, a slipped disk can be fixed, this pain just goes on and on.  PLEASE! Try to understand it’s a condition that will last our entire life and ultimately may well lead to significant, permanent and worsening disability.  It’s a very hard road and sometimes you just want to hear that people are there for you without condition or judgment.

 

If there is one thing I’d like to see happen from our sharing of stories is that people not afflicted could somehow understand the deep painful cuts that the condescending ignorance and unsolicited advice, well meaning as it may be, can inflict – almost universally it comes at the worst possible times.  Most have a team of professionals trying to help us, we don’t want or need advice – we need supporting friends and family.

 

In my darkest and most hopeless times, I would lay in bed sleepless night after sleepless night wishing for the luxury of death, please just take me.  In fact, I thought I might even be able to will death – and then one very long and pain filled night I could clearly feel my soul circling the drain.  Hard to put in words or explain, but absolutely true, I was shown a door, fear brought me back.  The constant and severe pain is without question, completely overwhelming much of the time.  I know for certain, anybody that lives with AS will develop, must develop, a depth to their soul that is unyielding and hard as diamond.

 

That night was a turning point for me; I awoke knowing I had fully passed any last denials I may have been clinging to and understood the battle for my very soul was really just beginning; all I now felt was a deep anger.  I’ve never had much time for self pity; my personal rollercoaster of rage seemed to leave little room or other emotions.  I have always fought to stay bathed in the light, but deep and very dark shadows crept in often during this period.  I had a bridge abutment picked out, but I knew deep down it would totally demean my mother’s suffering and I had to hold on and live, if only to honor her pain, her life given for me.

 

I got myself to the famed Mayo clinic in the late eighty’s; I walked in with a sedimentation rate of “over 125” – a pretty typical number for me at the time.  The Mayo clinic rheumatologist prescribed Sulfasalazine, a new disease modifying drug; this drug was pretty effective for me and eventually backed things down to level that I could get back to work, if only barely.  Most importantly I received a much needed ray of hope from the wonderful, passionate, and up-to-date rheumatologist I visited at Mayo, he told me new drugs (that turned out to be Cox inhibitors and TNF blockers) where in testing and showing great promise, even though they were still years into the future, he stressed I needed to hold on, do what I could to stay in the best shape possible and not give up hope.

 

I knew hope was my only way back from anger and despair and I was able to rekindle my weakening faith and hope based on his honest and obvious passion for the science of the future.   I recommitted myself to bicycling and swimming, the two most enjoyable things that I could still physically handle, at least to a limited degree.

 

I am a big fan of Yoga; I do not do a long or elaborate daily routine.  I simply have a few self developed postures that I do twice a day, every day, which really help my spine.  I feel deep controlled breathing is crucial to posture and an overall sense of well being.  If I would recommend one thing it would be daily deep breathing exercises that push the spine up and back – filling the lungs and rib cage by using the abdomen muscles to the maximum available – while driving, while at work, as often as possible.

 

I was now back to a full time position stemming from the job security offered over the cool seasonal traffic gig.  I was doing strictly office work, preliminary (concept) highway design, planning functions, and environmental research , fortunate to have an interesting job that I could still manage to do most days.  I took every opportunity I could for time off – this held me back regarding advancement, but honestly I was lucky to be able to work at all.  I gave my all to serve, truly blessed that I was not working only for pay, public service is an honor and privilege that’s has never been lost on me, it’s given the challenge of working while dealing with severe AS pure meaning, not based solely in profit, but in common cause and service.

 

A couple of doctor comments – I am very fortunate to now have a great primary care physician and a wonderful rheumatologist.  This has not always been the case, I’ve had two specific doctors that where absolutely terrible and I knew it from our first few meetings.  The first was a primary care physician I’ll call Dr. “Christian”, I had an insurance change and had to pick a new doctor, Dr. “Christian” actually sent me to a sports clinic with the idea that he would “rebuild” me.  This guy was so unable to understand AS, no empathy at all, a total ignorant and judgmental jerk.

 

Of course the sports clinic had no clue about AS and expected me to do weight training like I was an athlete, more reps today than yesterday.  I was actively inflamed throughout my fast fusing spine and had active and severe neck and sternum/rib inflammation taking deeper and deeper hold.  The combined ignorance was stunning, I was so happy to get back to Dr. G.

 

I also had a rheumatologist; I’ll call Dr. “Riddle” that was a total nut-bag and unbelievably arrogant jerk.  At first I was impressed he went to China to study, but soon learned he was all about ego and money.  He actually said to me that public service was my real problem.  I’ve never been sure what the implication was, but it felt like he thought I simply needed more profit motivated pressure in my life to be cured.  It turned out the guy was a money grubbing nut-bag and narcissistic fool; I still hear nasty stories about him today.  The point of these two mentions is to not waste time with a doctor that you know does not understand, care, or if you are simply uncomfortable with for whatever reason.

 

The real challenge with doctor relationships is to not react negatively to what you don’t want to hear, yet do react with caution to what you know to be false, counter intuitive or counterproductive to your best interests.  Of course this is not easy to differentiate, but trust your heart; you will know when you need to make a change.  I wasted more time than I should have with the aforementioned jerks, insurance issues were in play, but in hind sight I needed to take charge and make a move sooner.

 

The patient has to take charge of their treatment – no secrets can be kept, there can be no deceit from the patient.  The relationship must be understood to be a working partnership, yet the patient must carry the effort, try to do the treatment regiments requested to the very best of one’s ability.  The doctor is simply the mirror that reflects a source of knowledge, a source of treatment strategies for the patient to undertake.  An honest, seeker patient will bring out the best in a good doctor, the patient must be willing to discuss all issues in detail, question, explain, describe, bring in notes or a journal, and above all be absolutely honest.  Try to build a real trust with the doctor.

 

Learn how to not overstate or understate your frustrations and pain, a written record can be invaluable to one’s own understanding and help the doctor to see your personal battles.  The doctor cannot fix you, but only help you find some relief and perhaps slow or hold at bay this disease.  The doctor is respected by the patient giving full effort to help themselves, unfortunately the patient needs to bring his or her best efforts into the exam room when least able, yet an honest and committed patient effort primes the best outcome possible.

 

Do not grip this disease or the pain, we are not the disease, simply the flesh that carries it – always fight to get better, always do what you can, do not surrender – no matter what.  Rest when you must, but not because you can.  Live hard it’s a hard life we must live.

 

“The path of least resistance makes both men and rivers crooked” M.K. Gandhi – literally with AS.

 

I had my first non-joint issue resulting from AS in 1993 – advanced diverticulitis had slipped in under the radar due to the early symptoms being well masked by Prednisolone.  According to the doctors I came within hours of succumbing to infection and ultimately lost about 18 inches of perforated colon.  My wife saved my life by demanding that I go to the emergency room when I was content to sleep – a rare deep sleep.

 

After being stabilized, which took well over a week; my biggest fear going into surgery was being stuck even longer in an unforgiving hospital bed.  I am huge waterbed fan.  The combination of Sulfasalazine, Prednisolone, NSAID’s and weed had things somewhat under control – at least as opposed to the late 80’s, but I was very concerned about the long lay-up and how the inactivity would affect my actively fusing and inflamed spine, ribs, and neck.  I also was told may end up with a colostomy bag; thankfully I came through just fine with all natural plumbing restored.  I believe I would have risen to the challenge, but further perceived function loss would have been very hard to take at this still simmering point in the thinly veiled anger that was my existence.

 

I walked from the recovery area to my room without physical support or pain medication; I didn’t think anything of it, that is until every nurse and doctor I saw in the hospital asked me about it.  Indeed my pain threshold has been well developed.  I had a long and slow healing process at the incision site; it took three years or more before the incision was fully healed due to long standing and continued Prednisolone use.  I did have a brief summer remission after surgery, which was a much needed blessing while I built back my physical strength and found a more peaceful spirit.  Indeed, after this surgery I was doing pretty good, my weight was back down, Prednisolone (and my fork) had added a lot of weight to my frame.

 

I managed to get back on the race track for a single weekend and rode the wheels off my Ducati Paso.  It was a fabulous weekend that started with great trepidation and ended brimming with the satisfaction that I still had the passion and ability to rail on the racetrack…Grattan Raceway, Michigan Aug 1993 was to be my last roadrace outing and it went great, I was, by now, an expert level rider with a fast, smooth and flowing style that was getting noticed, I had SO much fun.  One of the most joy filled days of my life and a fitting end to my racing passion, now it was time to finally let it go – for good; an important step to releasing my anger.

 

I should comment on weed, it’s helped me greatly over the years by numbing the mental stress of AS and pealing back layers of the tense and pain filled mind to find ways to peace.  I’ve never found weed to be very effective from a purely physical pain perspective, but invaluable for living with severe pain.  Weed’s down side is not to be underestimated.  They don’t call it “dope” because it makes you more intelligent – the potential of losing motivation and falling into depression with diminishing metal capacity must be respected and kept in check with reasonable restraint.  Lung damage is also a special problem for AS people when and if the ribs start to fuse.  So to quote Hunter S Thompson, “it worked for me but I wouldn’t recommend it.”  Of course I kid (kind of), be very careful, in these strange days weed could cost you a career and much more – unfairly or not, it is illegal (in most states), but more importantly will bite back viscously if abused.  Clearly not for everyone, but I believe a viable and effective option to consider if severe pain is taking over to the point of spiritual desperation.   I must remind – my wife (who’s never smoked weed) and I do not have children, which would greatly, in my mind, complicate or likely eliminate use of cannabis (smoking anyway) as a therapy.  Obviously this is a very personal issue.

 

The fact stood that I was well into the brutal existence of active AS and no amount of personal power was going change the fact that what was once possible is no longer.  By the mid-90’s I would take rides on my Ducati jazzed by prednisone – I would take 20-30mgs (above my normal dose) to take a short fun ride and then pay for it for a week or more with barely tolerable pain and soreness.  The deep searing burn of my spine felt like knives buried between each vertebra, yet such is a deep and spiritual passion, fight and fight to keep it going regardless of how hard, painful, and risk filled it is.  I took all the precautions one can take with riding gear, but at a certain point it became virtually impossible physically to continue – not that that has ever actually stopped me, the truth is, what’s physically possible is slowly and painfully diminished to a memory or fleeting shadow of what once was.  We have to find a way to accept this reality or go insane with anger and depression over the loss.  A move to full disability was encouraged by Dr. G and briefly considered, “not just yet”, I said to Dr. G, but I got my financial ducks lined up best I could should the time come.

 

I had friends doing competitive long distance endurance riding which was an emerging motorcycle sport in the mid-90’s; I looked on with hollowed out envy knowing full well that it was something I would never-ever be able to do, at the time I would have taken or done anything to try. The hard fact was that I was now simply playing around with old classic motorcycles; I was really unable to ride other than on a rare day take an afternoon ride with lots of drugs and physical payback required.

 

Physically things where falling apart pretty quickly in the mid and late 90’s, a little over 20 years from first problems and about 15 years from the official AS diagnosis. I was still hanging on to a mostly joyful outward life – my goal was to stay employed, travel a bit, keep my attitude positive as possible and most importantly keep my heart pure, a full time challenge, given the natural depression and daily frustrations from the unrelenting pain, crippling effects and constant fatigue.  My employment status had been pushed to the ragged edge; I was taking way too many days off and often would lose weeks or more of pay.  I cannot stress enough how much my wife’s unequivocal support to chase my motorcycle passion and her belief in my inner strength, when I had little belief left myself, helped me to survive the 90’s decade of fighting for my soul – while (at times) nearly overwhelmed with anger and despair.

 

By now my neck was fully involved and losing rotation quickly, my upper spine was very painful and sensitive to even the slightest touch, mid spine to pelvis I was fully fused, my rib cage was becoming one big bone with very limited chest expansion.  My hips hurt most of the time; I could walk gingery most days, but hardly at all on others.  A quarter mile may as well been twenty miles.  My powerful athletic body was now a thing of the distant past and I had finally accepted that fact, while still fighting hard to hang on to what I had left.

 

Even as bad as it was, I knew I had allot to be thankful for, I still had a good job, good health insurance, a very supportive wife who had been through it all with me with some good friends that went back to before.  It’s always been important, for reasons I don’t fully understand, to have people in my life that knew me as the active and physical person I was before AS.  My posture was much better than my mom’s at the same age – this was a huge plus in my eyes.  I was still kicking hard and living a productive life of public service, thankful each day for the privilege. Emotionally I had crossed a threshold and essentially accepted my limited situation.   I was able to telecommute doing visual imaging and was having allot fun working with some great people doing photography and building CADD models to drop into the photographs.  I also published Mn/DOT’s first CADD Data Standards Manual and trained consultants and DOT staff on their application.  Public service has been an unbelievable blessing and a very fulfilling occupation for this JFK inspired baby boomer.

 

I’ve never given up on new or untried treatments, such as antibiotic therapy, flirting with miracle juices and dietary supplements.  I was still playing silly games of hope and desperation even though I knew better.  During the mid and late 90’s I also did a couple runs with Methotrexate and Imuran in various forms and delivery methods, this was not something that worked for me at all, I got very sick and even more fatigued.  The new Cox inhibitors (Vioxx) in my case helped allot with pain, I also finally added a narcotic pain medication to my drug arsenal, and had a brief run with Stadahl, an inhalant that I had to admit to my doctor was way too addicting, settling on Darvocet for an, as needed, but seldom used, pain control option.

 

The fatigue…that is a whole page onto itself, but to sum up, at a certain level all the physical pain and mental frustration just boils down to one big bowel of unrelenting and total soul flatting fatigue that stems from the daily social frustrations, constant physical pain, associated mental stress and natural depression, not to mention the very real biological stress’s placed on the body.  There is no “just buck up” and push through it, not when you are in the fight of your life just to make it through the day.

 

The resulting anger and frustration has to be released, the way to acceptance is deep and personal, and I can only offer that it can be done with faith and love – anger and blame is the enemy – you must find a way to forgive yourself and your maker.  An honest acceptance of life with AS is the single hardest part of a person’s lifelong journey with this insidious and unpredictable beast.

 

By honest I mean being able to look unflinchingly into the mirror and understand we have a choice, we can chase the light or dwell in the darkness – we have this choice every moment of every single day.  I have come to accept that the laws of nature are finite and in matters of nature we have little choice, influence perhaps, but no actual choice.  We do have the absolute choice to live with love or hate, anger and denial or forgiveness and acceptance, we can be bathed in the light or encasing by the darkness – on this choice all depends.

 

A man should learn to detect and…grasp…that gleam of light which flashes across his mind from within.  From within or from behind, a light shines through us upon things, and makes us aware that we are nothing, but the light is all. ~Ralph Waldo Emerson

 

As the 1990’s came to a close I was finally getting past the anger phase and well into the honest acceptance of my hard and pain filled, but now mostly joyful existence.  I had a “last” day out on the Ducati, it was a perfect summer day, hot, dry, no wind and as I sat in a park I took my “last ride” photograph, tears of acceptance flowed, it was clear AS had put an end to spirited Ducati riding and any future motorcycling, my life blood, would be brief classic bike putts around the neighborhood, I would continue motorcycle play with my vintage iron, doing what I could, yet knowing full well that I would very soon be selling everything and getting on with life.

 

 

I still keep that “last ride” picture on my desk, I was finally, at peace with AS and my future, whatever it was to be – my expectations now seemed to fit with my life.  And my life was good, not in any way what I would have chosen, but full none the less – days filled with many challenges and much pain, my body was broken, but my mind was strong and my soul intact.  My mother set the bar – her example helped carry me and it was in honor of her strength and courage that prevented my surrender during my darkest days.  I knew AS was no longer my master, but only my very challenging life partner.  The battle had swung, certainly not all at once, but in a way that was part earned, part grace.  Like a struggling musician that suddenly believes he can play, the long hours of struggle, practice and commitment do pay off.

 

Life with AS is an unyielding lessen in what’s really important in life…Faith, Love, Truth, Service…there is no way one can successfully live with this disease without understanding the deeply spiritual walk of humility and service to others.  I have learned through personal action, that when I am suffering most, the way out is to help somebody else, a random act of kindness, a simple smile at a stranger, any time an opportunity presents itself try to lift another – act with grace.  In this way we move beyond ourselves and our own pain.  Love and commit fully to a pet.  One thing that was a great help to me was the adoption of a little kitten that we found on the road in 1997, a sweet kitten simply tossed away, he was so tiny he fit in a coffee mug.  Kitty butt became a very important little ball of love for me that helped carry me over the hump of my last days of regret and anger to an honest acceptance.  An animal saved and truly loved will illuminate one’s heart in a pure and immeasurable way.  This universal truth of loves lifting and cleansing reaction is self evident when the acts are done without any expectation of repayment.

 

“Love cures people, both the ones who give it and the ones who receive it” … Dr. Karl Menninger

 

I like James Hunters definition of love from his book The Servant Leader – Love is not the emotional feeling of being in love, but life’s principled actions based in the act of love.

  1. Patient – showing self-control.
  2. Kind – giving attention, appreciation, and encouragement.
  3. Humble – being authentic without pretense and arrogance.
  4. Respectful – treating others as important people.
  5. Selfless – meeting the needs of others.
  6. Forgiving – giving up resentment when wronged.
  7. Honest – being free from deception.
  8. Committed – sticking to your choices.

 

Principles I absolutely believe are keys to a truly happy life, regardless of any situation and I strive to live up to this list the best I can.    “When I let go of what I am, I become what I might be” Lao Tzu

 

My AS journey has been long, deeply painful, lonely, and challenging, yet I feel that the depth required to fight this terrible affliction can be found by anyone so long as ones heart remains open and pure.  I have learned to stay active and fully engaged in the pursuit of living well and with an open heart, at times my rage and anger has been total and my self-hatred deep, but my motives have always been honest, I do not grip my suffering, I try always to move past my limitations and frustrations to the very best of my ability – abilities often very limited.  That’s all we can do, yet we must also accept that it is all we can do.

 

My miracle happened in 2001!   I received my first dose of Remicade…as ridiculous as this may sound, I walked out of the hospital felling like a light switch had been thrown, “this is amazing, I can feel the inflammation dropping off” I thought as I walked to my Aerostar mini-van, the only vehicle I could comfortably drive or get in and out of.  I was on Prednisolone, Sulfasalazine, Darvocet, Vioxx and weed and still in allot physical pain with very active inflammation…yet here I was feeling better after one dose of Remicade … Could this be real?

 

As I got more doses of Remicade things got better at an astounding pace…to cut it to the chase, three years later I was off everything but Sulfasalazine and a very low dose of Prednisolone, which was finally dropped in about 2006, with Sulfasalazine shortly after, weed is also in my past – I’m now clean and prescription free for the first time in essentially my adult life – save 8 week 500cc IV’s of Remicade and a very occasional Vicodin, an existence that would have been inconceivable just a few years prior.

 

I SO wish Remicade worked for all like it does for me; it’s heartbreaking to have learned that TNF blockers are still not the big fix for everybody that we all seek.  I have been given fabulous relief, but have also realized that while my inflammation is now very well controlled, AS is still there, lurking, but for now moving at a snail’s pace, but always ready to pounce again if it gets the chance.  I do not take one day, even one hour, for granted.

 

I had and continue to have bouts of Iritis since starting Remicade, Prednisolone eye drops work very well for me, and while the first run with Iritis cost me some vision – almost overnight.  I have not had any further vision loss.  I keep the drops at home and start them at the faintest hint of elevated eye inflammation.   I also get very nasty headaches from the tension building up in my neck and skull – deep breathing can do amazing things and I can get the tension to release if I quiet down and breathe into my skull/neck joint.

 

I was now working as a geometric design consultant, doing highway layout reviews, design training, evaluating problem crash areas and providing technical assistance to design teams.  The Transportation department took a brutal amount of cuts to finance construction loans and the cool visual imaging job got axed with me landing in the State geometrics office.   It was a good time to be flexible, experienced and able.  After things settled down and I got more relief from Remicade I got a promotion to a Railroad Administration project manager position, it’s very complicated and varied work with allot of public exposure, political/legal involvement, difficult negotiations tied to complex engineering with plenty of  stress thrown in, but thanks to Remicade I’m able to shine brightly once again.

 

I was also able to start a second life of motorcycle competition.  In 2002 I bought new adventure touring motorcycle and in 2003 entered my first long distance endurance event, I rode 1381 miles in 24 hours and earned a solid top five finish.  I also rode my Husqvarna TE610 at a super-moto track day in 2006 and was jumping the bike over a dirt table top and railing through pavement corners with ease.  Since 2003 I’ve managed to ride over 1500 miles in 24 hours (Bun Burner Gold) and have won two long distance events and taken multiple top five finishes as an expert class endurance rider – all absolutely inconceivable a few short years before.  This second book of my motorcycle competition life is being written with more fun and challenges ahead, a risk to be sure, but managed risk rooted in my deepest passion.

 

I did try a 40 mph motorcycle crash on for size, the roadside gravel was flying by my helmet and I felt a painful blow upon impact with a curb, thoughts of a wheel chair instantly came into focus and scared a cat’s life out of me, but I got up and rode home, I had three broken ribs, but was otherwise OK.  It was as scary a single moment as I’ve ever had.  Ultimately I felt good that my protective gear worked well and even as fused and crippled as I am I’m not as fragile as one (me included) might expect.  I have to give my long time doctor kudos for not freaking out on me, he understands I need my passion and has long ago given up trying to get me to stop.  I know that day is still coming; I just hope I’m wise enough to do it on my terms.

 

Today I have very little, if any chest expansion, essentially a fully fused rib cage, my pelvis and spine is fully fused, although I have a couple of vertebra mid-back that hinge slightly.  My neck has a fair bit of side to side turning movement, just enough to drive, my forward to back neck movement is very limited, and no way can I get my ears out of vertical.  My feet are good, but with some fused and surgically corrected toes.  I have some minor issues with my shoulders.  My hips are fine – which considering I once had doctors telling me I’d have them replaced by age 40 or even pilot a wheelchair is nothing short of a miracle.  I’ve lost a little over 4 inches in height, but feel optimistic that I may not lose much more so long as I can keep my breath work going.  I sleep in a firm wave less waterbed and start out every night on my back doing deep breathing to pop the mid-back hinge, it’s really an amazing thing to feel – it’s painful, but ultimately gives great relief with the pop and crack of tension that releases and corrects (to the extent possible) my posture.

 

I recently started using a CPAP machine because of long standing sleep apnea and while I resisted this move for a long time (I hate the idea of machine dependency), I have to say it’s been great to get a good night’s sleep again, I can’t remember how long it had been, other than many, many years due to the AS pain and later sleep apnea.  I’m now fully addicted to pressurized night air.  What a joy to hit REM and really dream again 😉

 

I went to the Body Works exhibit when it was here in St. Paul – I highly recommend it if you get a chance.  I was amazed to see firsthand just how thick the spinal sheath really is…of course my level of risk taking is not for everyone, but I feel stronger and healthier at age 52 than I did from age 25 to 45 and feel very blessed to have made it here mentally strong, without fear or regret – but most importantly with a pure heart.  This remarkable day, a near painless 52nd birthday, was absolutely inconceivable during the many, many years of the unrelenting and painful assault on my body and very soul due to AS.

 

Never give up hope for a better tomorrow, it’s always possible and may well happen as wonderfully effective new drugs are developed every day.  With the strides made in medical treatment the future holds allot of hope for people with AS, still no cure, but significant strides have been made recently with more progress clearly in sight.  There is so much more awareness and support available today that I think many of the things that took me years to learn can now perhaps be gleaned from sharing with others the frustrations, the successes, and daily battles.

 

With the benefit of over 30 years of hindsight, I am a firm believer in early and aggressive prescription drug treatment.  Many prescription drugs have serious long term side effects, potentially fatal even, yet given the choice of a life of crippling pain and permanent deformity vs. a higher quality of life and full function …well this is one decision everybody’s got to sort out for themselves, but I know where I stand.

 

“I know what I know, if you know what I mean”  …Edie Brickell

 

Once diagnosed, AS is a disease that will be at the forefront of your life – with you always and forever it is.  The key to a happy and fulfilling life will be to accept it, endure it, and with all your soul keep love in your heart.  Live as physically healthy lifestyle as possible and with your entire being strive to maintain a positive and honest outlook.  Simply put – fight hard every single day to stand tall.

 

“Chase the light, absorb the light, be the light” … Jim Weatherhead

 

From the heart, with love and respect,

Jim


3 Responses to “An AS Life “A Blessed Man’s Journey””

  1. Dear Jim,
    Thank you so much for giving me the honor of sharing this. You are such an inspiration to me and such an amazing writer.
    Your can do or I will do attitude has inspired me to do things with my AS Life that I never thought possible.
    You give us hope.
    All my love and admiration,
    Cookie

  2. Thank you for sharing this. I never realized you rode motorcycles. I can’t ‘drive’ one but I so enjoy my rides with S. It’s worth the pain for sure. Much love and hugs.

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