Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group A peculiar question I even know the answer........

Uh, let me think for a moment.. (one microsecond later..) YES!!!

I'm sure though, I'd wonder where all that money that would magically appear in my bank account that had been previously spent on doctors, physical therapists, etc, came from

you sure?....lol

(WARNING: Look, this post got a lot darker than I ever intended it to. If you are sensitive about the changes AS has brought to your life, or perhaps depressed over your current medical status, this might not be the best post for you to read. I didn't intend for it to go this way, but the more I delved into the original question, the more that spewed out. I would hate for this to trigger anything in another KA member, so please, I am very serious when I say that it would be best to skip this if you are already in a bad frame of mind. If anyone wants to drop me a line because they feel I went to far in any way, I strongly urge them to do so, please. Maybe I'm being far too sensitive here, but I've belonged to other forums where "trigger" posts caused some real problems, and I would never want that to happen here. --Brad)




To quote Zernike, "Oh h*** yes." There were so many folks saying "no" that I paused for a minute to think about this, fighting off the impulse to key that first sentence as fast as I could. Then I came to my senses and stopped fighting.

I understand what everyone is saying about how AS made them the person they are today, and let them experience emotions and feelings they would otherwise have not had, and I can certainly say the same things. However, deep down, I really don't like the person that AS has made me. Well, that is too sweeping a statement, but at its core, it's true. What I mean by that is I don't like being a person who has to plan out every step, every day, every night out. I don't like being a person who. at least a few times each month, watches someone get down on the floor for one reason or another and then easily stand up again, and then I try to remember for even one second how those motions felt, to let my mind try to replay how natural and fluid such movements used to be. And the real b**** is that I stopped being able to "feel" it in any way about 5 or 6 years ago. I watched my friend sit on the floor to play with my dog, and when I did that mental trick, I was shocked to find that it was gone, that nothing was left. I'm sure that what I'm trying to describe here is completely abstract or even nonsensical to most of you, but I think some of you will understand what I mean. And if you do, you'll know why later that night I cried my eyes out when I thought about that moment, and why I felt such a powerful, crushing loss.

That's just one of a million (or so it feels like. sometimes) things I notice, or think about out of nowhere, that somehow lead me back to wondering who I used to be before AS, and who I would have been without it. I might be happy now with large parts of the person I've become--good friend, good listener, a compassionate, caring person--but I have to fight so hard every day to make sure those good parts of me don't get lost, and that they stay at the forefront of who I am, because some of the other parts of me that AS has brought to the table--the angry, short-tempered, impatient, cynical, bitter parts--are always lurking immediately behind those good parts. And wow, I hate that.

I hate the unspoken question behind the eyes of every new person I meet. I hate the spoken question of those people I know who finally feel comfortable enough around me to ask, "So, I hope you don't mind me asking, but what happened to you?" You know what? Yeah, I do mind. It's really none of your business--if you're a good enough friend, I'll tell you in my own time--and besides that, I hate it that you insist on having a label you can place on me. Does it make you feel more comfortable if you know that what "happened to me" is quite rare, and therefore something else you don't have to worry about potentially ruining your life? Why is is so important to know?

I really hate the once-a-decade person who tells me that if I would just let myself be reborn in Christ, that he would take my disease away from me. I hate the people who don't know the difference between compassion and pity, and can't hide the latter from me when they look at me. I hate it when children stare at me when I go out in public, and when they loudly ask their parent, "What's wrong with him? Why does he walk funny?" (I know they don't know better and are just exhibiting natural curiosity, and I'm NEVER mad at the kids, but that doesn't make it hurt any less.) I hate even more the teenagers who giggle and laugh, and poke their friends and then point. And I REALLY hate the adults, the young women who should have known better, who thought they were oh-so-clever and it would be oh-so-funny to try to convince me that their friend thought I was really cute and she was dying to meet me, or the catcalls from the cars next to me at traffic lights. (With the former, I think the only thing that kept that night from haunting me forever was the way one of my best friends fiercely defended me when he learned what had happened, although I'm guessing the extreme amount of satisfaction I felt when he reduced one of the girls to tears wasn't exactly one of my shining moments either. Thanks AS.)

All of those things happened; some of them keep happening. All because of AS. Every one of those incidents was devestating; some chipped away at my very core and left marks that never healed. Others were gone in blindingly bright flashes of anger and hatred, emotions I wish I would never have to experience with that intensity again, but I know I will. and I'll hate myself for it. And there we get to the worst hatred that AS can cause in me, or in anyone--self-hatred, self-loathing. I'm pretty good at fighting those off, but it's amazing how few words it can take from another person to drop me to the canvas in that fight.

And I haven't even touched on the physical stuff and how AS has literally changed the way I do almost everything in my life, and not in a good way. From the basics, such as how I get in and out of bed, how I go to the bathroom, how I eat, how I sleep, h***, how I breathe, to the more sublime, such as how I play with my pets, how I play poker (or any game), how I make love, how I use the computer right this minute, AS has changed everything. And not in a good way. I CAN point to one great result of all those changes, and that is developing a real inventive streak. If there is something that I can't do anymore because of AS, I have managed to come up with some bastardized, alternate way of doing the majority of those things. As I've told many people, when you realize that you either have to come up with a new way of doing something or stop doing that thing, the choice is pretty easy, and 9 times out of 10 I'll find a new way (hmmm....as I say that, I wonder: 9 sounds a little high. Probably 8 out of 10, or even 7 out of 10 is more accurate). So yeah, the fact that I've mastered "necessity is the mother of invention" is a bonus, but let me tell ya, hardly worth the trade off.

OK, enough depressing thoughts for one night. My neck hurts, and I'm tired. I probably shouldn't have committed all this to "paper," but if we're going to be brutally honest and talk about what I personally would do if given the chance to go back and live life without AS, then this stuff has to be said. AS has so dominated my life, that to give this answer any less thought would be a disservice. Luckily, all the things I've mentioned here are, by and large, things that I've wrestled with long ago and pretty much tucked away into various dark corners of my psyche. Sure, they pop out from time to time, most often when a new incident happens that takes me hurtling back to a past hurt, but I'm old enough and experienced enough to deal with them better than I used to.

And please, don't think that any of this is self-pity, or that I feel sorry for myself because of AS. No, just the opposite--every day I thank god that I don't have an even heavier burden to live with, because every day there are so many examples of people who are far worse off than I am right now. As I've said many times, I have wonderful friends and family; I have people in my life who love me with all their heart, and who I love back the same way; I have a steady income and a good home. I now that I am blessed in so many ways, and it is always that thought that does lift me up and that does make it easier to be the usually happy, fun-loving person that I am. That said, the question asked in this post was a specific one, and fun-loving person or no, for me to fully answer it, I had to open a lot of doors that lead to some pretty dark rooms. I truly hope that none of those doors I've opened have upset anyone; that definitely was not my intention.

OK, really do have to go to bed, feeling worse physically by the minute. Tomorrow is another day.

Brad

I'm very recently dx'd, and prior to the past year had pretty mild and sporadic symptoms. So yeah, I'd get rid of AS in a second. It's 3 am and I'm at my computer because my bones are aching too much to sleep. I can't work out on my elliptical any longer because it puts to much stress on my SI joints and my body in general. I have to watch carefully what I eat and drink because of all the meds; and because certain food seem to trigger increased pain. When the meds are all working, I feel reasonably good, but it seems like I never have more than 4-5 days in a row where things are stable. I know that my AS is in an aggressive phase right now, but I'm scared about what is in store for me. I know I have to make my peace with this and learn to live with it, and I'm doing that as best I can. But I hate that I will have to spend the rest of my life managing this illness and its unpredictability. But, since I can't get rid of it, I'm determined to make the best of it and to live as full a life as possible.

Monnica

Yes.
I am sure I've come up with some creative ways to deal with my less than perfect vision... oh yeah, I wear glasses. And I am glad for the friends I've made here, but I'm sure there are some awesome people over on a cancer forum right now that I am grateful I am not getting to know. Certainly my 'character' has developed a bit, but I really don't want to give all the credit for that to my disease. I'd rather not need glasses, not need a community of support based on an illness, and not need to develop grace and character until I'm 60. That doesn't mean I'm not thankful for all those things....

Brad, I read your warning at the beginning of your post with a morbid fascination, like driving past the scene of an accident...I slowed down and rubber-necked.
I cannot imagine how anyone could take offence at what you wrote. It was from the heart and no, it wasn't all about rainbows and unicorns but cracking open those cobwebbed doors that lead to shaddowy nooks and crannies of our psyche is just as important and vital.
Thank you for sharing. I'll wager that there are a lot of people who are reassured to know that they are not as alone as they once thought, thanks to your post.

I take it your answer to the question was "Yes"? I did a search using Ctl+F to make sure and found that the word "yes" appeared only one time - when you quoted Zernike. I thought that was interesting.

You are loved Brad and I know for a fact that a great number of us ASKickers appreciate everything you have to say.

Sending love to you Brad, you are the greatest guy ever!

Yes, absolutely! I don't fear pain that much. I fear fusion and especially fusion in a poor posture. I also fear a loss of independence.

When you first asked me this Alan, I said Yes with only some hesitation but then you went and re-worded the question ... and ultimately, I have to say no.

If it were just a magic wand and question of taking the pain away then that's easy. Just like when my doc first asked if I wanted to try remicade treatments; it took me two questions and all of about 10 seconds (5 just to get past the shock of the offer) to blurt, "Yes. Oh yes." however, I get stuck on the "..it's memories and all that it has been in your life" part.

Alongside of robbing me of many joys I will never know, it has shaped who I am and I kinda like me... I think I would have liked the me who had never been hit with AS too but I never really had the chance to get to know her. Hmmm, I wonder whether or how much our age of onset reflects back in our answers. There are instances, tremendously scary/poignant moments for me, where without the experience of AS I would've been hopeless to really help someone else. I won't give those away. And on this path, I haven't had to worry about recognising real friends, that is a significant gift... and the friends I have made, wow.

I think I'm very fortunate not to have been too negatively affected by mean-spirited people. Well, I was in the beginning but, unless I'm in denial, I think I'm pretty good at ignoring and shutting out that noise. Not to say I haven't been deeply hurt or anxious or embarrassed at times or had my self-belief rocked, I have, but I know in my heart I am far luckier than they are. Plus, I don't think any of us gets out of here without serious adversity. I don't know where she got it from, but my sis used to always say "fair ends in grade 8", and I think that's true really. Nope, I wouldn't trade this me.

I wouldn't want to have missed the honour and privilege it is to read Brad's words. Or of getting to know you Alan as mushy as that may sound.

Ask me again if the remi stops working, or, if the day comes where I can no longer scrunch down to play with a puppy, then I am changing my answer. Those are tears and fears that I don't know that I am strong enough to handle.

mig
x

wow......amazing answer. New name


Mushy Mig...yay

Thank you.