I Am My Mother’s Son

Ankylosing Spondylitis awareness post – today I turn 61 (April 2019). I know suffering and I know grace. I have been blessed beyond words. At age thirty I could not have imagined or hoped for the life I am able to live today…

…spring 1984. I received an unequivocal diagnosis of Ankylosing Spondylitis at the University of Minnesota hospital after about 12 years of various and progressively worse symptoms. I had fully fused sciatic joints and my lumber sine was already starting to fuse, I was just about to turn 26; it was the best day and worst day of my life – “best” – finally a long sought answer to the severe pain, “worst” – an answer that felt like my soul got hit by a Mack truck.

When I first heard the doctor’s description of AS my mind immediately went to an image like I posted here – this was now to be my future.

Imagine the fear I felt that day – most people don’t have this imagine of AS instantly pop into their heads when they start out, but because of my mother’s advanced case (always described as the result of a farm injury) I knew all too well what AS was. I knew well the ugly underside of this disease first hand. I’d seen it all too closely in the years of darkness that comes with the unrelenting physical and mental pain. I thought back to the pain, tears, and the private, hidden moments that no son should ever see his mother face on so many nights spent alone, just her and I.

I am my mother’s son, her fate was now to be my fate.

Dec 17, 2018
I came across this very mature AS warrior at a local hospital while visiting family. I instantly thought of my mother whose posture and fully consumed condition late in her life (the age I am now) was every bit as bad as this man’s, even a little worse if you can imagine that. At first I didn’t recognize he was a hospital patient due to the parka, but then I noticed his legs where wrapped and understood he was a patient taking a walk.

I passed him and discreetly and snapped this picture – I wanted the photo to help show why I so often stress to young people starting out with AS to fear the disease, not the medications or treatments – this is not a pretend disease. I often try to describe my mother’s life with AS but have never really had a good illustration of what her posture really looked like after about age 55.

Folks need to understand that taking days off or failing to aggressively work to manage AS, or as sometimes happens, simply giving up on the medical community due to the enormous difficulty of finding an effective balance of treatments, can lead to extremely serious long range impacts. AS is a disease that must always be treated with an eye and focus to the future, oh so very difficult when the present is engulfed in flames.

Every case of AS is unique and it’s safe to say that today, while many cases of AS are very severe, most (thankfully) can and will become managed to a greater level than ever before given the medical advancements that have occurred in the last couple decades. Every case of AS must be consistently and actively managed – one does not EVER want to let AS ever remain untreated, or become out of control. Thankfully the level of impact illustrated above is pretty much a thing of the past.

Because of my mother’s case, I was never under any illusions the stakes of the battle ahead when I was diagnosed in 1984. Now I was in denial thinking my case could be managed with lifestyle and diet and that I could even “win”, but I had no illusions of the disease at its worst. My mother was an unbelievably strong woman; I watched her, beginning as a young child, struggle with virtually no help or any effective treatment keep putting one foot in front of the other. She worked labor jobs and battled this unrelenting beast by herself. She was undiagnosed for almost her entire life. I cannot imagine the mental chaos she suffered due to no effective physical treatment or physiological support and little if any personal understanding of what was actually happening in to her; pain filled day after pain filled day as she crippled up beyond words right before “our” eyes.

The isolation one feels is soul crushing, even today with all the awareness and support we have available many people become very isolated, especially due to the fact that for most of one’s life, in the prime years of life, this disease is invisible and impossible to understand by all but the very most astute family and professionals. I will not try to describe the levels of severe pain people endure with AS other than to say a well known pain measure called the McGill scale puts active AS pain just below childbirth, but constant and without end. It’s often 24/7/365 for years, even decades and all invisible until late in life.

Back to the man – I got a little ways ahead of him and waited on a bench for him to get to me – sitting very low so he could see me – keep in mind his spine, ribs, pelvis, and neck are all one solid bone and at this late stage he’s also become very fragile. His spine has painfully and slowly been destroyed by the attacks to his body by his own immune system, this level of impact may take decades of assault to “burn through” the healthy tissues and turn them to calcified and brittle bone – he can’t look up or turn his head. As he approached I could see his comfortable focus point was about 6 inches in front of his feet. To look forward, sideways, or upwards the only method available is to bend a knee and lean his entire body, his mobility is severely limited.

When he got up to me, sill seated, I said – without touching him or getting in his path – “Hey warrior – how long have you been battling Ankylosing Spondylitis” – I was half expecting him to walk on by – he was putting every ounce of his focus and energy into walking… he paused, probably surprised to her the words Ankylosing Spondylitis; I leaned down further so he could see me, he leaned and looked at me – we made brief eye contact, just enough for our warrior souls to connect and he simply said – “started in my hips when I was a kid”, “yep me too”, I said, then added “my mom had it like you, nobody believed her till she had to quit working when she was 58 – that’s when they told her what it was” – how about you? When did you know?” … “When I couldn’t get on the tractor anymore they sent me to a doctor” then saying, “I got to finish my walk” …. “I know, got to keep moving” …”Yep” …”Good luck, maybe I’ll see you tomorrow” …

We made brief eye contact again; his cloudy eyes had the 1000 yard stare of pain we AS’ers know all too well, yet still warm in their depths. To survive this type of disease the anger has to be relinquished, one can’t submit, but one needs to accept reality and seek a peaceful soul, what may have been matters not, only what is and how one steps forward adapting to each new challenge.

I was hoping to have more time to chat but was happy to have had a moment… I did not see him again and of course the hospital wouldn’t tell me anything about him when I asked the next day.

Today this level on impact for anyone under about age 55 “should” be a thing of the past. That said many still suffer unbelievable pain, frustration, and isolation. Many struggle with poor treatment response, life threatening side-effects, and treatment confusion by their various medical specialists. Many get caught up with various types of charlatans preying on the desperate people while leading them away from evidential paths of treatment. Some get frustrated with the constant battle to find a cocktail of treatment and lifestyle adjustments and simply give up. For anyone that has walked this path, we all understand the reality of giving up regardless of how strong or motivated we may be.

One of our well known AS elders that I got to know very well once told me he knows that because he got frustrated and gave up seeking treatment for a time and taking the pain, that he greatly undermined his future – decisions made in his twenty’s severely impacted his body in his forty’s and beyond.

I can’t imagine the horror of not having access to quality medical treatment with this disease, yet many face that burden, a bad doctor is probably worse than no doctor. Living in a large city I was able to shop and find a great care team, many simply are not afforded that luxury.

Personal coping abilities are often frayed to the very edge of sanity and will assuredly overwhelm even the strongest of souls at times…finding hope and holding onto passions are the last refuge and the only path I know that can lead one to the acceptance required to move beyond the soul stealing pain and adapt to ones “real” life. A loving pet can do wonders for the soul and help motivate us to keep moving.

It is often a very long journey to learn how to live with this disease and find a balance of treatment strategies that may lead one past the flaming hell of this crippling disease to an existence that can see light again. AS is still is very much, in many cases, a very crippling disease, thankfully not often to the horrifying levels illustrated here, but the severe pain, unpredictability of when it hits, and the deep emotional scars are still all very real, even if the disease cannot be seen.

Had it not been for the biologic class of pharmaceuticals coming out around the turn of the century I was well on my way to the crippled future illustrated by this man. Without Remicade I know I’d look much like this man today.

From my mid 20’s all the way into my early 40’s I lived a life of 24/7/365 debilitating pain, yet I reached a point of acceptance and had made all the adjustments that allowed me to live a fulfilling life, a hard life, but thankfully a productive life despite still living with very active AS. It was only then that I received the miracle of Remicade. People that only have known in the last 15 years have never seen me in the pain I lived for the previous 25. Pain and fatigue is a huge problem for people with AS, even with the best of inflammatory control treatment full fusion and hyperkyphosis may still occur for those that don’t respond well to treatment. That said all but the very worst cases can now be managed so much better than was the case going back just a couple generations.

If you have suffered back pain, hip pain, or even heal pain for more than a few months – or wake up with these types of pain that gets better with movement. If you are taking over the counter pain medication routinely for pain or morning stiffness – please see or ask for a referral to a Rheumatologist and ask to be checked for autoinflammatory conditions. Don’t ignore these symptoms – if you do have AS it’s not going to go away on its own – the sooner you know, the sooner you start treatment the better your prognosis will be.

If you have AS – please, never take a day off in managing this disease – never grip the disease or have long self pity parties – and most of all, never lose hope that your case can and will be managed, the advances and growth of treatments and deeper understandings of the disease has never moved faster than the last decade. Give inflammation fighting options a chance to work; treatment focus must always be on the crippling inflammation not “just” the pain. Strive to live healthy, and please, don’t give away your health to bad habits – you’ve got none to spare and above all – keep moving.

May my blessing be your blessing.

Peace/Love
Jim – Face #103


3 Responses to “I Am My Mother’s Son”

  1. I have seen this picture that you must have posted on other sites.This is also my worry being an AS sufferer and i do mean sufferer.I pray that most of us do not have to endure this kind of posture as we age.Well said.Thank you

  2. Well holy cow are you a writer or what ?
    Are you Cookies ambassador ?
    You nailed a lot of points in my life.
    I’m almost 60 and I’ve never in allll my life
    been as mad as a wet hen then I am now.

    Maybe I know life has simply passed me by.
    Your very well spoken Jim.
    My inflammation and fusion is off the charts.
    I have other health issues too but don’t want
    to be a Debbie Downer.

    I know you’re not a Doctor…..but what would
    you do if you also have unrelated bone
    cancer ? What biologic would you take ?
    Or would you not take anything ?

    Yes I’ve been to 3 different rheumatologists
    and they tell me not to take any biologics
    because of the high cancer risk.

    See why I’m madder than a wet hen ?!?!??
    I’m so inflamed and it’s.every.single.day.
    Aorta is affected. Spine is fused and
    fusing in a LARGE S shape.
    Nope the LARGE S doesn’t stand for
    superwoman either 🙁

    It’s draining, so damn isolating. I am truly
    sad. People that don’t have AS or know
    what it is can be pretty damn cruel with
    their comments….“You don’t look sick” is
    a phrase I hear a lot. One of my own family
    members actually said to me
    “You don’t look motivated today “.
    My heart just sank. After all these years and
    my own family doesn’t get it.
    Yet they can see myinflamed fingers and
    other joints , rock solid neck and twisted
    fused spine and see that
    I’m looking at the floor when I walk.

    Music is the only thing that I find remotely
    healing. I would love to go to a rock concert
    but of course I would need to sit down.
    Can’t stand in place except a very few
    short minutes.
    I question why I’m even alive sometimes.

    I return a Wisconsin blessing to you Jim.
    ☮️✝️ audie FACE 2000

  3. You have brought me to tears. Reading this made me realize that I cannot give up, which I have been ready to do. I have been fortunate enough to have an amazing team of doctors, but the frustration of side effects made me want to stop all treatment. After reading this I know I must continue.

    Thank you!!

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