Tuesday, June 30, 2009

This is why...

Often people ask me why I stayed with my partner after he did not disclose his status to me for several months. This is the answer, originally written June 18th, 2008, before I knew what was wrong with him:

Spotting Love

The other day he fell. It wasn’t a terrible fall and in and of itself it would not have been a big deal. The problem is that the fall was not an isolated incident. Along with falling, his speech has been slow and mangled, his memory has been weak and his strength has been deteriorating rapidly. What does this all mean? We simply do not know.

Yesterday we went to see a neurological specialist on the Upper East Side. After a series of tests she said that he did, in fact, have a neurological disorder. To pinpoint exactly what it is will take a series of even more tests -- a MRI, a spinal something or other, extensive blood work, etc – and it could be a few weeks before they can diagnose him specifically.

Getting anywhere on the far east side of Manhattan is a bit of a hassle. We took the 4 to 59th where we transferred to the 6 up to 68th. At 68th we walked east – all the way east – to York and 70th. It would normally have been inconvenient but now that one of us has trouble walking, it was grueling.

Usually we walk at an extremely quick pace. We always have. New York is unforgiving to the slow. If you move to New York you accept certain unwritten rules, one of which is the requirement of a speedy gait. If you move slowly you pay the price.

Through the years when we have navigated the city together I usually walked a few steps ahead. And when I arrive at the destination I look back and he is just a few steps away. I never worried that he would fall…or stop…or forget where he was. That has now all changed.

Yesterday I made sure he walked ahead of me. My eyes never left his body. When he ascended stairs or an escalator I positioned myself just a few feet behind in case he lost his balance. If he were to fall, I was there to catch him. And if someone were to get aggravated by his slow pace I could step in so that they would be aggravated with me instead. I would be his strong arm when his became too weak, his legs when his quit working, his mind when his went blank.

On our way home, after we stepped off our last escalator, he leaned in and whispered “Thanks for spotting me, babe”. Up to that point I was unaware he noticed. In fact I did not want him to notice. I wanted him to feel as normal as possible and did not want him to perceive me as acting any way but normal.

And as we walked out of the station I began to cry. Thankfully my sunglasses were able to shield my tears from anyone noticing, especially him. But I began to cry because I am scared. I am scared out of my fucking mind. I have never been so scared about anything in my entire life. He has been through health scares before but nothing like this. And this is not the way it was supposed to play out.

The love that I have for him is something I cannot put into words. I never knew such a love ever existed. And if it did exist it certainly would never find me. But it did find me.

It found me on a Sunday afternoon in August of 2001. On that day I wandered into Hannah’s Lava Lounge in the Hell’s Kitchen area of Manhattan. They were playing BINGO and I thought it might be fun. However, when I sat down I noticed someone sitting a few feet away. He was cute, had an infectious laugh and he intrigued me. We began talking and we have been together ever since. Nearly seven years later, one day at a time, together.

I have had so many problems over the years, many of which I have put on blogs such as this. My issues, every single one, were issues he took as his own. If I was sick, he fed me. Dirty, he bathed me. Sad, he comforted me. Angry, he calmed me. He was always the rock, the foundation. The most charming of all the princes, the shiniest of all the knights.

He was the one that kept the red bucket by my side and washed it when it became full. He was the one that held me the night I sobbed over my grandfather’s death. He was the one that came to find me the night I was so drunk I did not know where I was and the one that made sure I had ginger-ale to drink when I was parched. He is the one that made me a bouquet of flowers out of paper napkins because we did not have the money for real flowers. He is the one that made me a cake to celebrate my anniversary of moving to New York. He is the one that left me a handwritten note on the kitchen counter every morning before he went to work. It always said I love you. I always knew.

But now I am the one. The one that makes sure I am never more than a few feet away when he is taking a shower in case he falls. The one that calms him when he can’t remember where he is. I am the one that makes sure he eats healthy food. I am the one that watches him while he sleeps to make sure he is still breathing and worries every time he coughs. The roles have changed, forcibly and by no decision of ours. The warrior is now the child. And the child, the reluctant warrior.

Today, like clockwork, the Mr. Softee ice-cream truck went by our building. Like a young boy, he perked up and said “I want an ice cream cone. Do you think I will be able to make it out there before he leaves?”

“I don’t know. Maybe…” Before I could finish my sentence he was out the door. Dressed in his slippers, pajama bottoms and a hoodie he went downstairs to find the ice-cream truck. I grabbed my camera and opened the window.

I wanted the picture. Not because I think he might be gone soon, though he might. Not because I don’t have enough pictures of him, though I don’t. Not because he looked so innocent and sweet, though he did. I took the picture because a day will come, no matter what comes of this, and I might forget.

I might forget just how adorable he looks in his pajama bottoms. I might forget that he loves ice cream. A lot. I might forget how cute he is when he eats from a cone and how cute our dog is watching him eat from the cone. No matter what, I don’t want to forget.

So tomorrow we go for the MRI. And as we go I will be just a few feet behind. I will make sure he doesn’t fall and that he gets to where he needs to be. I can’t promise I won’t cry. In fact I know I will. But through it all I’ll be spotting him. Because through it all he has always spotted me.


UPDATE: A continuing story on Ric's condition here

Saturday, June 27, 2009

Tuesday, June 23, 2009

God's Love We Deliver

Today, in the midst of the chaos and sadness, Jon-Marc and his partner Ric want to extend congratulations and thanks to God's Love We Deliver which today celebrated delivering their ten-millionth meal to those in need, one of which was included in a bag of meals that was delivered to us today. Please, to the many readers of this blog and know of our story through the series Angels I Don't See , consider making a donation to God's Love. You can do so here at their donation page. But first watch the video below.




Thank you God's Love. You are truly doing the work of God!

79 days ago

I look at this picture to remind me of my drinking and how it physically transforms me. I look at it often so I can remember the hell of the relapse when "I cannot recall with sufficient force". The many days in the past 77 I have looked at this picture and see the pain and cry. Today, I looked at it and saw the pain and thought "it can't be worse than it is right now". The pain of today is so strong that the pain of that picture pales in comparison.

Friday, June 19, 2009

This is the hardest story that I've ever told. No hope or love or glory. Happy endings gone forever more

This song, by Mika, is a song that captures the emotions that I have been feeling lately
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