GASPINGS
What follows are various "Thoughts to ponder" taken from my postings on the GASP Facebook page. If you find them interesting or thought provoking, come join the conversation on the GASP Facebook page. - Michael Smith

http://www.facebook.com/#!/groups/192443460790412/

A Poem for my fellow Spondys - by Michael Tracy Smith - c 2004

                     
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There is a moment, after they tell you,

That you have an incurable, chronic degenerative disease,

That you feel all alone,

That you ARE all alone,

That you are the only one that you know that has to deal with something so huge,

so formidible, so difficult, so challenging and utterly life-changing.

There is a moment, after they tell you, That everything will be okay,

That you feel they are lying, that your life is now definitely and completely over,

and that no-one understands or knows the full extent of what you have lost.


We do. We who have what you have. We who've lost what you've lost.

We who feel the pain that you feel. We who struggle with what you struggle with.

We're fighting to keep our lives from becoming less than what we dreamed they would be before all this.   And we're scared that we are losing the fight.

We know. We know the fear of unknown disability and uncertain futures.

We know how what you thought you were is no longer how you are.

We know how hard life has become in more ways than anyone else can possibly know.

We know. We are a miracle in your life.

We are the vindication that you are not alone, that you are understood by someone.

We are your reassurance that despite it all, you can make it through the difficult times.

We are your mirror and your sounding board.

We are your miracle.

We are not alone, we are united in our understanding.

We are each other's insistence that we can carry on, that giving up is not an option.

We are each other's lesson that our lives still have worth and can continue on,

striving to learn and then reaching out to teach, in an unending cycle of giving and receiving.

When you sink into despair, and think the worst,

We know. We have too.

We know all the levels of Hell that there are to know.

Just as you know them.

We are your miracle.

We will steady you, so you don't fall, help you learn to cope and shed real tears for your pain,

which is the pain we, ourselves know all too well.

There is a moment, sometimes long after they tell you that you have an incurable, chronic degenerative disease, that you come to know that you are still you and that despite it all,
you are going to be all right.

We are each other's miracle.


                 
***

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haiku: Scars are reminders,
That Life can be risky, but
we can, and will, heal.

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"More thoughts to ponder:

Dreams. Do they have to die just because you have a chronic disease? Someone asked about giving up dreams over on the SAA message board. Here's what I think ... what do you think about having to give up dreams?

I had to change careers and put a number of dreams away, but what I found was a different path with other equally interesting dreams to pursue.

I was in a high stress job in broadcasting when diagnosed, the stress was aggravating the AS, so I left and found a less stressful job. I had dreams of being an actor for a long time and even was one for a while, but I found that that dream was not one I could continue with AS, so I became a playwright and ironically, ended up writing a number of one-person plays that I got to perform in a regional theater and off-off-Broadway. I then discovered a whole new outlet for my writing on the internet.

For those who fear AS will kill their dreams, I would tell them that the path to your dreams will always show back up. When you think you have put one dream away, another will bubble to the surface. Dreams don't really die, they undergo a metamorphosis so they can re-emerge somewhere down the road.

I've shared this analogy before, but for me the fact that my neck was losing its ability to turn was, to me, akin to putting blinders on a horse. It wasn't limiting to me, but rather it focused my attention. I was all over the place when I was young, but this forced me to look ahead and keep my mind on where I was going. It got me focused in much the same way the old cartoons and silent movies used to 'iris in' to focus on a specific part of the movie frame so you could make sure to see some thing important that was happening.

You can hold having this disease in many different ways. Context is a powerful tool in coping. This disease can be held as a burden or it can be held as a challenge. It can limit you or focus your attention on what is really important.

Find the context in which you can hold having this disease and continuing to reach for your dreams. It may take adapting your dreams, it may take re-thinking them, but dreams are all made up things anyway. If they go away, you just make up more.

Having this disease doesn't have to be tragic. Tragic is a feeling we apply to situations, it is not a requirement for having a chronic disease. Pretend you have never heard of anyone having a chronic disease, and then make up what it would be like for yourself, not what it's like based on all the movies and TV dramas you've seen, where people with chronic diseases always suffer and complain and seem pathetic. Pretend you've never seen all those dramas and all that suffering. None of that is real and nothing says we have to follow any of those Hollywood scripts for our own lives.

Remember, they're your dreams, you can make them fit how you are now.

It's up to you. Live your life as if you've been chosen for a very special and unique journey that only you get to experience. And remember, dreams are your imagination's maps, which they ask your mind to draw. Simply draw them as you are, not as you wish you could still be."


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Another thought to ponder: "

"Can you change? Are you willing to change? Are you willing to accept change that is thrust upon you? Can you fundamentally change the thrust of your life without regret for what might have been?

Can you understand that what might have been, will always hold you back until you can let it go and stop yearning for lost opportunities?

Do you know that your forward progress is tethered to your unfulfilled desires and will keep pulling you back until you cut that unfulfilled desire loose and bid it forever adieu. I understand how sad that may seem, but just know that you were not meant for what might have been, you were meant for what can be, and you will become that for which you strive towards, not from what you have been forced to back away from.

Embrace where you are and do not weep for who you didn't turn out to be. You were not put here to wallow in misery or have a life defined by dashed hopes, and unachievable dreams, you were put here to fulfill your own greater purpose and to reach for and achieve your loftiest goals. Don't define yourself by past disappointments or thwarted ambitions, define yourself by the success you are about to work towards and achieve."


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"What do you do each day to say, I am still and ever me?
To plant your flag and tell the world that what you are, you'll be,
To state emphatically that you'll remain the person that you've been,
For though your path is shifting, and the tides go out and in,
You are the same now as you were, it's just a brand new game,
The wrapping may be diff'rent but the content is the same."

- m.t.s. 8/17/2011


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Some more thoughts to ponder: Over the years, I've heard so many people with AS talk about loss; the loss of their abilities to do certain things, the loss of relationships and friendships, the loss of careers, the loss of their old selves, the loss of their ability to feel good, and the loss of their future. I seldom hear people talk about loss as being beneficial in opening them up to new pleasures, new experiences, new careers, etc. Do you ever think of loss as simply a refocusing or re-shifting of your priorities? Or as a seismic event that literally forces you into becoming the person that, in retrospect, you really should have been in the first place? Could you ever see having AS as an opportunity to literally get out of your comfort zone and expand who you are? Does obsessing over what we've lost, or what we're no longer able to do, blind us to the new opportunities for growth that are awaiting us? Does lamenting the loss of who we were, impede or interfere with our construction of who we will become? What does it take to choose to work on what you can be tomorrow over trying to desperately hold on to who you were yesterday? Is it as simple as giving yourself permission to be on a different path than the one you always thought you would be on? And are we sometimes more comfortable staying in 'remorse mode', that state of perpetual despair, because at least when we're there, we know where we are and what we're all about, rather than experiencing the uncertainty of starting down a new path ... Over the years, I gradually lost the ability to turn my neck. I always held it, not as an inability to look from side to side, but more like putting blinders on a horse; it focused my attention on what was right in front of me, so I wouldn't be distracted. It seems to me loss can be held in a similar way. We can obsess about what we have lost, or try to embrace the empty space which that loss has created, and savor the opportunity we now have to fill it. What do you think?


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More thoughts to ponder: Okay, here's a bit of a twist; In accepting having AS, and learning to cope, have you gone too far? By that, I mean, are you TOO good at coping? Do you tend to put up with some symptoms because you figure it just comes with having AS? Have you ever waited too long to see a doctor in the hope or on the assumption that your symptoms were just part of an AS flare-up and would go away? How do we continue to find a balance between not jumping into a panic at every new physical change that comes along and knowing when to go see a doctor about a possible new problem? I know I've been guilty of waiting a bit too long in the past. Just curious about all of your thoughts, since this is something, that, it seems to me, is rarely discussed.


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Self-image. Is it the forgotten piece of the AS treatment puzzle? I have always believed that the devastation that AS inflicts on our self-image is nearly as destructive as the physical havoc it brings to our bodies. In Life, none of us are what we used to be. But that's a concept that most people have a lifetime to slowly come to grips with. For people with AS, that shift from who we were to who we are now, often can happen within only a few short years. How do you deal with it? Do you turn inward and purposely create a smaller universe for yourself? Or do you keep reaching out and pushing at the edges to try to keep your world from becoming any smaller? How do you deal with, not the physical pain, but the pyschic pain of no longer being the person you once were?


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"You know that you're in the fusing stage:

1) When you go to put your shoes on, and you find that your arms are four inches too short.

2) "On your tippy-toes" has become the default setting for reaching things on store shelves.

3) When someone taps you on the shoulder, you have to pivot your whole body in order to see who it is.

4) When lying on your back on the floor ... Oh who are we kidding? YOU? On the floor? (Sorry, let me try that again...)(Clears throat) When you're on the floor, and lying on your back, you aren't able to get back up and people have started to call you, 'turtle'...

5) When someone punches you in the stomach, you actually stand up straighter.

6) On the Fourth of July, you can only assume fireworks are going off.

7) You nearly drown when attempting to do the breast-stroke.

8) For men only: When getting checked for hernias, all you can do is cough.
8) For women only: You break your nose every time you get a mammogram.

9: When it comes to change on the sidewalk, you don't even bother with anything less than a dollar.

10: You've begun to think of sleeping in the fetal position as sleeping in a futile position.


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How to tell the difference between Spondylosis and Spondylitis:

Spondylosis in small doses,
Cannot "delight us" like Spondylitis.

Both affect the spine to a degree,
Spondy one and two, you see,

"Losis" is from wear and tear,
"Litis" inflames from a flare.

Which is which and who is who,
Spondy one and Spondy too.

One comes to stay when you are young,
The other after your flings are flung.

Who is which, and which is who,
Spondy one and Spondy too.


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For anyone that struggles to be creative while dealing with a chronic disease such as AS, did you know that Impressionist Master, Pierre Auguste Renoir suffered from severe Rheumatoid Arthritis? AND he continued to paint even when his hands were so deformed by the arthritis that he had to have his brushes wedged between his fingers and his hands wrapped with gauze to keep the brushes in place? It's true. Perserverance personified. Let nothing stop you in your own quest to create!
http://arthritis.about.com/od/art/a/renoir.htm


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Some thoughts to ponder: Do you accept having AS? If not, what holds you back and keeps you from fully accepting that you have a chronic, degenerative inflammatory disease? Have you come to grips with AS being a part of who you are from here on out? Do you have a belief that you might still get back to the way you were before AS? Do you cling to the hope that this will all go away at some point? What keeps you from enjoying, not the disease, but enjoying your life which includes this disease? Do you believe that acceptance is akin to giving up the fight? Or do you think that without acceptance, you can't move into the coping stage? What piece of the puzzle, if any, is missing in the map of your happiness? Where are the stops in your acceptance? What are the things that you just can't let go of? Where do you imagine this journey is taking you? What lessons do you think you're learning?


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Back in the late Seventies / early Eighties, when I was a struggling actor, one of my acting teachers used to talk about setting yourself up in games you can win. He used to say that when he stepped out onto the sidewalk each morning, he'd look for an ant, and each day, he'd race that ant to the corner. He always won, and so, always started his day off with a win. So today, go out and find your ant.


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"Don't Fuse Me Up" - A song parody
(To the tune of "Don't Fence Me In")

To begin, let me say,
having Spondylitis sucks,
Donít fuse me up.

Let me bend, let me crouch,
let me ride some bronco bucks,
Don't fuse me up.

Let me sit through a play right to the very end,
Or stand selling coffee till weíre out of mocha blend,
Iíll even do PT if you force me to attend,
But please, Don't fuse me up.

Keep my back loose, (not like rocks),
So I can still put on my socks,
without cursing to the skies,
And my old hips, let Ďem wander over yonder
As my way of exercise.
(One, two, one, two, threeÖ)

I want to have lots of pills when the pain commences
And howl at the moon when I lose my senses
At least Iíll have deductions for my medical expenses,
Don't fuse me up.

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In a cave, located near the peak of Mt. Spondymore, a withered old man hobbled into the sunlight. He bestowed upon the young visitor the following words, written on the back of a laundry receipt: "There is no suffering. There is only experiencing. This plane of existence allows us a full range of experiences. Revel in all of them for they are what you are here for, and they are inevitable in such a plane of existence. Resisting what is inevitable is to go against the universe, which makes you the universe's obstacle. Be one with the universe and your life will flow with the force of the universe ... and drink plenty of fluids and wear your seat belt ... oh, and never bet the farm on making an inside straight." The young man realized the old coot was nuts, and painfully drudged home, plopped into his recliner and watched TV for the rest of the day.


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This poem, in a slightly different form was given to me many years ago by a co-worker. I lost the original, so, a few years ago, I re-constructed it from memory. I've never been sure whether my co-worker wrote it or was just passing it on, so I'll just say it's author is unknown:

"A Day without Pain"

If I could live a day without pain,
I'd treasure each moment and never complain.

If I could live a day without pain,
I'd smile at strangers and dance in the rain.

If I could live a day without pain,
I'd sing every chorus and every refrain.

If I could live a day without pain,
I'd help an old woman safely onto a train.

If I could live a day without pain,
I'd be more productive and enjoy Life again.

If I could live a day without pain,
I'd look till I found you and shared every gain.

If I could live a day without pain,
I'd be so excited I might go insane.

But when the day's over and all's said and done,
I'd want to remember that on that day ... I won.


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A new song parody: "The Day They Diagnosed AS"
(To the tune of: "The Night They Drove Old Dixie Down"

Doctor Caine was his name and he worked at Beth Israel,
My inflammation was bad and Iíd froze up my back again
It was March of '85, I was hurtiní, just barely alive
Then on the tenth, I almost fell,
It's a time I remember, oh so well

The day they diagnosed AS
And my knees were both knocking,
The day they diagnosed AS
And my sister was mocking
She went, "nyah, nyah, nyah, nyah, nyah ..."

Back with my friends in L.I.C., when one day they said to me,
"Michael, you're not dead, but you canít bend nor turn your head,"
I didn't know the reason why, I felt so stiff and my eyes were so dry,
Pretty soon I would know all the rest,
Thanks to taking that gene marker test,

The day they diagnosed AS,
It felt kind of sordid,
The day they diagnosed AS,
My HMO ignored it,
They went, "La, la, la, la, la Ö, La, la, la, la, la, la, la, la, la"

Like so many before me, I still have to work full time,
And like so many before me, my life is an uphill climb,
I was 34, and thatís a fact, but AS stopped me in my tracks,

I swear by the mud below my shoes
You can't limber up when your back has been fused

The day they diagnosed AS
And my knees were both knocking,
The day they diagnosed AS
And my sister was mocking
She went, "nyah, nyah, nyah"

The day they diagnosed AS
And my knees were both knocking,
The day they diagnosed AS
And my sister was mocking
She went, "nyah, nyah, nyah"

From  12-12-2013:

Time for another mini-rant: There's a sign going around the online AS support groups that dramatically states that inside, people with AS feel as if their bodies are trying to kill them.

Personally I don't care for that kind of rhetoric. I think it's dangerous because it pretends to be positive and pro-active, but is actually creating a negative mindset within the context of being a victim.

On the outside, you may not look as if you are sick, but on the inside, you are struggling to continue to be perceived as being normal, and feel as if you are beginning to lose that struggle.

You may be in great pain, you may be suffering tremendously, but please ... and I know this might be a difficult concept for some to grasp ... don't get stuck in the mindset that says because you have a chronic disease, your body has betrayed you.

Your body is not your enemy. Your body is NOT trying to kill you. It has no consciousness other than what you give it. If you continue to feed negative thoughts or buy into the notion that your body is trying to kill you, you will have a much more difficult battle to fight in learning to cope with this disease.

Your pain and suffering is NOT your body punishing you or actively attempting to ruin your life. Your imagination assigns that motive to it in your attempt to understand why this is happening to you.

But Chronic illness is simply the body not working as it should.

There is no curse or retribution for something bad you did. Your body has no ulterior motives. It is simply reacting to a stimulus. The stimulus set off forces over which you may have little or no control. Is it simply luck of the draw or predetermined by genetics? Who knows? It doesn't matter. Who are you is defined by who you are at this moment in time. How you deal with the life you have now, not the life you thought you were supposed to have. This is the life you were supposed to have. Make the most of it.

Instead of creating the mindset that your body is your enemy, do what you can to understand the mechanism of this disease and do what you can to minimize the negative aspects.

Focus your attention on doing what you can to make your life easier and your disease more manageable; Resist the temptation to find blame or create an enemy of your body.

Remember, words are powerful and reinforcing negative thoughts can create mindsets which are hard to break out of."

- Michael Smith a.k.a. Spenser23