I wrote my rheumatologist an email over the weekend. I told her of the severity of my pain...and of my latest symptoms...a shaking head and hand; headaches springing from my neck - severe and almost constant. And I told her of my sense that there is something more at play here than "merely" PA. She looked at my MRI of my cervical spine, done last week....and agreed.
One of the questions I'd asked her in my email was "Do I have Ankylosing Spondylitis?--and even though I really suspected that I do, I was still shocked when she agreed with me that it looks like that is what we are dealing with here because of the spontaneous fusions occurring on multiple levels in my spine. She told me that I need to immediately see a spinal surgeon to find out whether or not surgery would be helpful to make it more unlikely that I will become totally paralyzed. I did some reading--it's not so much the disease that would paralyze me as a fall, even a minor one, which can cause a fracture and cause paralysis or death
Does AS kill? Yes. It definitely can (as we all witnessed in the passing of Sara Frankl). Does it always? No. Not always. But I have a sneaking suspicion that those who are "lucky" enough to live--often wish they weren't...And this was confirmed when I read of the risk of suicide amongst sufferers. From what I've read online, it's a miserable, painful, exhausted life to look forward to. But I'm already experiencing that....So I wonder with some fear, "How much worse can it honestly get?" I'm listening to Mark Schultz's song "What will you do with the Time that's Left?" and he asks an even more thought provoking question: "What will you do with the Time that's Past?"
I look back on the years of health I had, most specifically my years in Washingtonville, NY--when I was working as an artist; at the only years of my life that I could label as "healthy, happy, and normal" --and I think to myself, 'If I'd known that that handful of years was all I'd have...how would I have lived? What would I have done?"
Well, for one thing, I would have taken greater care with the paintings I painted. I would have been a better mom. I would have done a better job. But then I have to really step back and say, "you know? I was doing the best that I could at the time. My artistic ability and my 'eye' kept developing --even during the years that I wasn't painting...so now, I look back at those paintings and find them amateur and awkward...but really, If I could have done better at the time, wouldn't I have?? Yes. I would have. And that goes for just about every other thing that I did back then. I was the best mom, the best child of God, the best housecleaner, cook, card maker, wife, friend...that I knew how to be. And honestly, I don't think greater effort would have improved anything...because that's how I always lived my life. Poured out. 100% effort in doing my best.
And this was true of my faith life: poured out wine; broken bread as Oswald Chambers likes to put it. Was there room for improvement? Of course...I could have been even more available to God for him to use...But again..that would be in an ideal world ...In my world with my limitations...I did the best I could..
But what about now? Spiritually things have decidedly cooled off. And while that's true in some ways...for example; service, attendance at church, time spent studying...and time spent in prayer...yes. my "report card' shows a decline. However I am working with a whole different deck of cards...not only a different hand. And considering my life now? My abilities and my limitations? Am I doing my best? I really do not know. Honestly, I don't. Like most people, my answer to that would vary with the situation...sometimes I do; and other times I don't. Do I mourn the times of failure? I do. Deeply. And am I asking for forgiveness and asking God to change me? Honestly, I do..but I probably could do that more...Just like I need to spend some more dedicated time in prayer.
So what happened n my life to cause this deep exhaustion...which I often accuse myself of as Laziness? IS it? How did it come to the point where I sit in a recliner or sleep all day? Maybe this is all I can do also. Is it? I just feel like it's such a pathetic amount of "accomplishment" compared to other parts of my life. But I am exhausted when I go to bed. Yesterday I went to the grocery store. I didn't even walk through the store..I rode one of those infernal scooters. And came home and slept for two hours...and then, after getting up for a couple of hours, went back to bed to sleep for another eleven hours. And now, having been up for one hour, I feel tired again.
It is really hard for me to be this tired and not feel guilty. All my life I've burnt the candle at both ends......and now even my match won't light. Is this a way to live and finish a life? To fizzle out? To "fade away" as Neil Young put it? Do I really have any choice? I need to ask and trust God that he will help me to live life to MY fullest. And yes, to do this...I'm going to need some help -most of all from God to give me the endurance I will need. And to provide the help that I know my family won't.