My Life With AS

just-me-3The AS in my life comes down to this:

Pretty simple description – fusion from top to bottom.

I often have to tolerate inquiries about my neck on a regular basis when I’m out in public.

I use these inquiries as opportunities to educate.

People sometimes seem to be moved by my positive attitude despite my physical restrictions.


AS affects my life, but maybe not as much as some people might think. The bottom line is that it restricts my neck and back’s movement and to a much lesser degree my walking, or gait. The limits of my back’s range of motion (ROM) are pretty significant. The limit on my neck is the most apparent when you look at me – I can’t turn my head but for just a few degrees left to right. My x-rays show almost total ossification at C1 and the base of my cranium, which makes it to where I can’t turn my head like how most people can. Because of this ossification this bone growth, I also can’t move my head up and down very much either.

I have substantial fusion between the vertebrae from the top (cervical 1, C1) to the bottom (sacral 1, S1). C1 is the vertebrae that connects to the skull and S1 is where the spinal column attaches to the pelvis. This fusion includes all the vertebrae along the spinal column.

So I can’t see things direct above me unless I bend at the knees and lean back. Sometimes this is a nuisance because I might want to see something that is up high, but seldom is it a big deal. And looking at the collar of my shirt without a mirror can be a challenge. But these incidences are pretty trivial overall. There are times that it gets in the way of something that I intend to do but it doesn’t stop me from doing anything. If I have to look for a book on a high bookshelf, for instance (and when is that easy for anyone?), I simply get a step stool or something to stand on to look. It doesn’t stop me from looking for or retrieving the book.

The most daily hindrance is my inability to look to my side when I’m sitting down. Like when I’m at the movies with a friend, I can’t casually look at him or her and talk before the movie starts (or during). I talk of course, but not with my head turned. I turn my shoulders and/or torso if I want to look to my side. The limited movement of my head is the most troublesome of my spinal column. We turn our heads probably hundreds of time a day if we can, and most people do it without thinking about it. Sometimes people have a stiff neck for various reasons, like sleeping on it wrong the night before, and people often think my stiff neck is temporary. I wish it were but it doesn’t stop me from doing what I want.

Walking is affected by my AS. Basically I walk fine, though in a stiffer manner than most people. Though I’m not in pain when I walk, the inability of my back to function normally in my walk causes me to move stiffly. The way that my body performs mechanically (its biomechanics) during its walk is not typical, and this causes it to compensate for this inability. The legs and arms move just fine most of the time, but because the vertebrae and pelvis aren’t articulating as well as it should, the walk is more stiff than it is for most other people. I usually walk no slower than other people, and often times I’m at a faster pace.

I regularly perform my music on stage. I realize when I’m such a center of attention people may have their impressions about me because of my limited ROM. I love performing on stage and don’t let my own projections of their impressions hinder me or slow me down. Because I’m a lively performer, people seem to really appreciate that I’m getting up there and doing that. I’m glad and am grateful that I live in such a pluralistic, and often compassionate, community where someone with physical or psychological limitations can follow their bliss!

I have no disease in my fingers, hands, arms, legs, feet, or toes. Medical tests on my muscle and nerve function give me a clean bill of health; no impairment in these regards at all, amazingly. My liver, kidneys, and blood are in great shape as well, despite years of my taking NSAIDs, ibuprofen, and/or naproxen. I’m not in pain, and my inflammation is maintained at a minimal level because I respond well to Humira┬« and methotrexate (this is not an endorsement of these medications, but they sure do work well for me!).

Because these medications allow me to be as active as I want, I feel that I’m subtly getting stronger all the time. It’s not affected by the weather. But I do notice a marked increase in tightness in my trapezoid muscles (around the neck) and in my body in general when I feel stressed. There are stress-relieving techniques that I rely on.

I’m confident about the future. I can do so many things I thought I wouldn’t be able to, like scuba dive, and I’m only was constrained as I allow myself to be.

2 thoughts on “My Life With AS

  1. Lotte Schmitz (Red Charity, Commodore)

    For what it’s worth: I believe that you’re the greatest and fiercest pirate out there, riding your bike like a Captain. I heard a quote over the weekend, that made me think about you immediately: “To err is human, to ARRR is pirating”.:-) I’m honored to work under such a fearless pirate.

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