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

Funny, I'm torn on this one. You'd think it would be pretty cut and dried, but it isn't.

On the 'No' side of things are all the same reasons several people have given already. I truly am a much better person, living a healthier lifestyle, since my diagnosis. I was already on that path, at least mentally on emotionally, due to my spiritual explorations, so that all might have happened eventually anyway, but the healthier lifestyle and the speed with which the emotional and mental changes ocurred are a direct result of my diagnosis. Fact is, my diagnosis opened my eyes to a few things and I know that were it not for that I would still be living in fear. I would still be afraid to be completely who I am. I would still be afraid to excel to the extent that I am certain is my potential. I would still be in angst over my past and fearful of my future. I would still be living in hellish pain and thinking it was normal (for a person my age, for a performer, for a Martian maybe?).

And I'm being very specific about the fact that it was my diagnosis that precipitated the positive changes in me. In retrospect, I've been living with AS my whole life; even if I wasn't evidencing overt symptoms, there were other things, like the lack of energy as a child. Truthfully, I don't know what it is to live without AS (even if my disease progression hasn't been as cruel as it is for so many) and this fact is at the core of some of the more negative aspects of my personality and early lifestyle. People always said I was lazy because I wasn't physically active, or I didn't throw myself into things the way other young folk did. People (teachers) said I was self-indulgent because I would give in to the incredible fatigue and energy drains I experienced as a teenager and young adult. I was capable of excelling at almost everything I did, but I didn't because it was all too much work. Only when it truly meant something to me did I push myself beyond the norm, and then I shone. But it really had to be extraordinarily important to me. I was lazy. I believed them. I believed that I was self-indulgent and selfish and egotistical and lazy and had no self-discipline. I believed that I was less than everyone around me, but I could never figure out why. And I never ever felt a part of things; even if I was surrounded by friends and family, I felt on the outskirts of their experience. It's amazing to me how visceral it all still is, even as I type this.

Would I take advantage of the opportunity to get rid of my AS and all the accompanying memories and experiences?

To say 'yes' is to negate an entire lifetime of experiences and I don't know what I would have become without them. Would I have utilized my talents as I should? Would I have been a natural athlete and dancer? Would I have excelled without trying? Would I have succeeded as a performer, instead of coasting through things? I'd like to think so, but I cannot answer that. Would my life have been easier? Probably. Would my life have been better? Possibly. But getting rid of my AS and the memories that go with it now, wouldn't allow me to redo all that I would like to. 'Yes,' I would say if that were the case.

To say 'no' ... who would I be now? I'm happier in many ways than I ever have been in my life the way things are. Would I be if I hadn't happened to have AS? Possibly not, if I were never diagnosed. It was the diagnosis that changed everything for me.

Have I answered the question? I'm not sure. Maybe?

And thank you to Alan for asking this question and to Brad for answering the way he did. Made me stop and think, you gents did.

Warm hugs,

Am a littleconfused about visceral, i know it is nice woth potatoes and onions but wasn't aware it had an impact on AS...................................Doh...!

Thanks Kat, yours like all of the others are amazing, deeply thought answers reasonings and personal search. I must say that what I thought to be a relatively trivial question has by chance mined some KA magnificence. Thank you.

Brad, a quote below from your post.




"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".

It is my humble view that whatever has made you the man you are. You are a jolly fine one. It is our pleasure to know you.

I think I am going to have to do some more thinking of this one. Brad, I understand every word you said and I understand every one else's thoughts and feelings.

Since I have been sick since I was a child (100 years ago) I am almost afraid to say "Yes" because I don't remember a life without any pain and have no clue what I would be if things were different.

I dream of a day without pain. I literally dream it. I am always in the sunshine (have to avoid because of Lupus), running and laughing (haven't been able to run in so long), have an arm full of wild flowers (I loved gardening)and the warm breeze feels so good. I guess my inner self would probably be screaming "Yes" if you interpret dreams. I have this same one fairly often and always wake up smiling so for just a little while I have really enjoyed some time in the sun running and laughing. I love that dream.

Thanks for making me think.

Blessings to you all. I miss you. I will be glad when I can be here more often.

Merry Christmas - Happy Holidays - Whatever it is you celebrate.

Possi

Hi Alan,

I've tried to read everyone's posting, and was actually able to make it through most. (My short attention span riddled brain doesn't always work very well.) The fact is, I'm really a pretty simple black and white kind of guy. Simply put, if I had the chance to stop the pain and disfigurement back when it would actually have made a difference, I guarantee that I would have jumped in with both feet regardless of the consequences. In fact, I went through a lot of treatments that were supposed to do just that to little or no avail. And, I'll bet that if Humira, Embrel, or Remicade was available in the 70's there is not a person here that would have traded years of "self improving" pain for that medicine. Ask a young person today if they want to do without these modern "cures" in order to be a "stronger" person. I'll give you 10 to 1 odds that I know the answer.

I understand what you are saying, and I would also hesitate to take the devil's deal and get "good" only for a big dose of bad. But in my life, that's not how it worked. I got "good" a lot of times by risking something bad, just like you did, Alan, with your surgery. You risked a world of hurt for 6 months so you could live in relative comfort for 15 years. Not a bad deal after you get through the 6 months. Of course there was no guarantee that you would get through the 6 months, and thank God you did.

Sorry if I brought this post down. There are a lot of realllllly fine responses here. I just wanted to add my 2 cents worth to your thought provoking question.

AS may have made me who I am today, but I liked who I was before also. I, like you have had it for more of my life than not. I would do it in a heartbeat without ever a second thought.
J.R.

brad,

since you wanted feedback if this post bothered anyone, i think it equally fitting to respond if it did just the opposite. you put a lot of my feelings into words.

i've found it so strange that i look at people doing something really simple that i used to take for granted and fight the anger i feel welling up in side of me, realize those feelings are not healthy and do my best to squash them, but like it or not, there they were.

it was really scary for me how i could relate to everything you were saying,

except for one, because of the course of my disease. i have very little outward signs of illness, except for the beginnings of what is probably kyphosis (how else do you explain the way i look back there, now that i know its inflammatory for sure, i just don't buy bad posture), except for that, i look perfectly healthy. so the insensitivity that i feel is the exact opposite of yours, but the feelings and emotions it evokes is the same.

i appreciate your putting so many of my feelings into words.
and like you, i do not like this part of who i've become,
and i fight it every step of the way.

thanks,

sue

I agree with Brad's post 100%.. I've had enough adversity in my life to spread to anyone who wants it! I hate the fatigue & tiredness and 2nd thoughts to everything I do.. Heck, even thinking about doing most things cause me fatigue and pain!!

I am not the only one suffering and being effected ....My kids suffer, my husband suffers ... and I cannot do a d*mned thing about it. AS has sucked the life and joy out of me along with the energy and spunk I once had long, long ago. I've lost friends because they couldn't cope. I've lost opportunities in life. I have only gained cynicism and sarcasm.

Yes, I do also have empathy and tenderness towards others, but that was already in me as a child in a BIG way. I don't think my suffering has helped that part of me grow. It seems I have less now since the AS monster has become a dominant invader in my life.

I feel the losses from AS are far greater than the gains....

Brad,

I enjoyed your post. I see a lot of my own feelings in your words.

I have made peace with the fact that I have AS. I am still affected by new challenges on a regular basis. Would I get rid of it if possible.... absolutely. I am in an amount of pain that is taking over my life. The fatigue as well. I can't keep up with my friends, and I am so afraid I would never be able to keep up if I have children.

My worst problem with AS is how others react to it. Not just strangers on the street... fortunately my back is not fused in an obvious way yet. Everyone else has to force their beliefs on you as soon as you tell them what's going on. I understand it's a natural feeling. I particularly like how you talk about the friend who is convinced that if you just start living for Christ then you'll be all better. While I understand where they're coming from... they are still operating on this misconception that it will change my future and the future is where the suffering is. No, I'm suffering NOW. I need to talk about it. I have plenty of hope for the future, but I'm so sick and tired of dealing with everyone else's denial. I'm past denial now, and I need someone to have the guts to stand out here with me. I know everyone has their own feelings of needing to cope with someone close to them being sick. However, it IS about me. Please just let it be about me, not your need to have me be the same old part of your life.

AS has brought out a side of me I don't like. It's brought out many things I do like, but I think I was already on that path. I think I was already pretty humble and understanding. AS has helped a lot in that department though. I hate that I fight the anger and irritability that comes along with fatigue and pain. I hate that I am yawning when I talk to my friends.

Perhaps I'm more cynical because I have been in a lot of pain over the past month/months. I understand why some people say they wouldn't. I would in a heartbeat.

Aly