Looking Back – Day 68 – Spondyville Snowman

Today is Day 68 of the Art Apple A Day Retrospective – for information on the project click here.

Day Sixty Eight – December 7, 2010

Looking back 10 years ago today…

My snowman…

My snowman was created on my friend Michael Smith’s Birthday to acknowledge all the amazing work he had done for years on end for the A.S. Community. Michael was advocating for people with Ankylosing Spondylitis years before I had ever heard about it or even felt the first symptom. He passed away a few years ago and for a year each Friday I would write a haiku in his honor because he was an amazing poet among all of his many talents. My haikus were ok, his were always so clever!

I miss his dry humor, his direct way of cutting through the BS, his humor, and most of all I miss the person I knew I could go to who would understand the struggles of trying to raise awareness of this disease.

Michael and I became friends online because of our shared wish of having this terrible disease become more known. His way was through humor, mine is through art. I think we both understood that by using these talents we could perhaps reach a larger audience. He created an apple for me at the Apple-A-Thon – that was the day I met him in person. I remember vividly him walking through the door at the event. His quiet presence in the doorway.

A few years later I traveled back to NYC to attend a fundraiser he had organized called, “The Best Medicine” (check out the page on his website Spondyville (his sister Victoria lovingly keeps the site maintained) where you can find a pic of me and the event poster I created for him. He was tireless in his efforts to advocate, raise awareness, and most importantly support others with the disease. He held weekly online support group meetings for years – even before they were a thing. His absence in the community is greatly felt. Below is a poem Michael wrote for people with Spondylitis. It’s powerful and the essence of who he was in supporting and teaching others how to survive this life. It’s the last paragraph that gets to me.

“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.”

Yes, we are going to be ok. Thank you so very much Michael. I love and miss you!

To see my original Day 68 post ~ Spondyville Snowman ~ from 10 years ago click here or on the image above.

And the story will continue tomorrow…

We are Each Other’s Miracle ~ by Michael Smith

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 formidable, 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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