Being Whole With Ankylosing Spondylitis
I have to admit that I rarely feel whole. I know my body is physically whole; in fact, I am in better health today than I was twenty years ago. In the past ten years, I lost 160 pounds, and I have more stamina and more good days than I have had since I was diagnosed with ankylosing spondylitis (AS) and rheumatoid arthritis (RA).
My joints are still swollen, and my hands still hurt. I sleep oddly if at all, and each day seems like a struggle. It is not that I cannot do those things. I can play with the grandchildren, I can pedal my bicycle, I can walk on the treadmill, but all the time I am doing it I know, I will pay tomorrow. I will be sore and stiff, and I drag like a man who has not slept for a year. It is that second day that causes the issue.
How would it feel to not worry?
Now do not think I am feeling sorry for myself. I like my life. It is arranged comfortably; I live in a safe house; we manage our bills well. I love my wife, sons, their partners, and grandchildren. But I wonder, how would it feel not to worry about tomorrow? There was a time I did not worry about how I would feel tomorrow. A time I would hike 12 miles in the thin mountain air, sleep on the ground, rise early and do it once again the next day, and the next and the next. I once hiked like that for 25 days. I was 17, healthy, and feeling fantastic. Heck, I was even newly diagnosed with diabetes that summer, and all that hiking while using insulin. I felt whole, accomplished even.
I do not feel that way anymore. Maybe that is okay. Perhaps at 63, it is okay that I can no longer do that. But I still miss it, and I still measure myself against that 17-year-old. I think most men my age measure themselves against their younger self.
What I cannot get my head around is how AS and RA impact that measurement. I know I have to account for it. I have to say yes, this was my younger self but without AS and RA. But how can I say that what I do today is what I should be able to do? I cannot even decide if I should account for it. Maybe I should say forget it, arthritis is a thing, to overcome, fight against, something to say I will not ever account for.
But when I muster all that bravado, I seem to get those little stumbling blocks in my path. I take methotrexate, and I miss a day. I have a slight flare, and I miss a week. I lay still to sleep through the night, and I miss the morning. In those times, I say, I am not whole. I can never be that 17 year old ever again. Heck, I cannot even approximate what that was.
Seeking new benchmarks
So I need a new benchmark. I need to find a new way of approximating my success. Success with three chronic diseases. Success based on what I can do, not on what I used to do. I suppose I will look for that for the rest of my life—a new benchmark to measure against. I think my therapist would say I need to stop looking for benchmarks. Instead, live for the possibilities of today. Not the could have, should have, might have of yesterday. I think, however, that measurement is part of me. It is as ingrained as my DNA. It is who I am, and for better or worse, that has worked well for me over the years. Even if today, it is no longer especially useful.
Letting go? - Ah, no
So can I let it go? Can I call myself whole today? Well maybe. My wife, Sheryl, advises me often that I must do that. She said the other day; you have accomplished a lot in your life and career. You can stop measuring yourself. Just live. Well, I have to say on my 63rd birthday I am not there yet, and since I am not, I do not yet feel whole. But I am trying. I may not be whole today, but I am ready to keep trying.
Do you use the word disability to describe your AS?