Dear Sara,

(Note: this letter is addressed to a friend who suffers from Anakylosing Spondylitis and is very disabled by it yet has a remarkable attitude. You are all invited to read it. Maybe it will help someone else as well.)

Dear Sara,
I have a bunch of questions I would like to ask you as I look at my life and go through what I am going through with asthmatic and arthritic diseases. I find I'm at a crossroads. My health for the past three years has steadily declined, hospitalizations are frequent, and the times that I am home I am usually ill. I am most of the time, in my recliner.

While there is still a small hope that things will improve at some point, my hopes of this are beginning to fade. For example, I still look at yoga DVDs and read articles on exercise-- knowing that chances are close to impossible that I will ever do anything like that again. But while I KNOW this with my mind, my heart does not know it. My heart is still a woman flying like the wind down the paved trail in Goshen on her well-used roller blades. I think the only way I am going to be able to incorporate my heart and my mind into some form of reality is to go through the grieving process....and I am still in the stage of "Disbelief."

Did you grieve Sara, when you finally realized that THIS IS IT..."I won't be leaving this apartment any more?" I read your post after your last ever doctor's visit to the office. You said you cried. I cried when I read of that event also.

Did you know from the get-go that your disease was going to lead you where it has? Were people honest with you about that? Because no one has been very honest with me. And I find that difficult to deal with. If someone could just TELL me what the future will hold, I think I could deal with it better. But for now, it's a big unknown and that is just as scary as the worst possibility. I can't prepare myself for it because it's also as bright as the best possibiltiy. Maybe no one really knows what my future holds. They know what it will likely hold but they don't want to say that because there's a small chance that things could improve.

Anyway...That one small chance that things will get better is what is giving me the biggest problem. I can't really grieve over a possibility. I can't even grieve over a PROBIBILTY; and I can't reconcile myself to it: I'm just stuck in the land of Denial. So I do things like joining an online weight loss community...and feel frustrated by all the exercise talk...I have to ignore all the goals that involve aerobics and strength training. I look around my house at the increasing mess and I make "plans" about spring cleaning and junk removal and garage sales....and now I am beginning to realize that this ALL is just complete foolishness. I haven't cleaned my house in several years (we've had to have someone come in to do it). I think about my herb garden....and realize that my houseplants are all dying because I haven't even been able to care for them, let alone a garden.

And now I've got to ask myself some really hard questions. IS that slim chance really there? Am I just kidding myself with wishful thinking? Has the possibilty faded and dwindled into a complete unlikelihood, in the realm of miracles? I don't want to be negative, but REALISTICALLY, will I ever do these things again?

And if the answer is yes to those questions, what is the next step? How did YOU handle it? Did you ever go through the stages of grieving and in your last one finally get to the point of choosing joy? Or did you somehow bypass that all and jump right into joy?

I'd like to skip to the conclusion myself. It would help somehow if someone would really take the time to talk honestly about my life and situation with me. I wish I could get my two doctors together and we could have a meeting about it. I think that because I don't talk much about, for instance, the pain that I'm in; people...even my doctors, do not understand or know how limited my life has been....that the combination of pain and breathlessness has been almost completely debilitating.

Sara, I don't have friends like you have, or the support that you seem to have, or even the financial wherewithall to have the options that you have. As I lay here in my hospital bed today, I wonder if I'll be able to go home from here...and where I'll go if I can't? And if that is the truth, then why am I worried about losing a few pounds and getting "in shape" when I can't even manage a flight of stairs?? And if I can somehow influence my ability to get better, than what am I doing laying here whining about things?

Sara, I hope you realize that some of these questions are directed at myself. And others are rhetorical...maybe aimed at God....I wonder if this is a process that everyone goes through at whatever stage in their life when things take a turn for the worse and they wonder about their future independance?