Thursday, August 9, 2012

dion's treasure box ...

On August 9, 2009, I suffered a loss that I was unprepared for emotionally.

My partner, Dion C Wade, passed away from Pneumocystis Pneumonia (PCP) and Kaposi's Sarcoma (KS), two opportunistic infections that occur in those with HIV which result in full-blown AIDS.

In October of 2008, we broke up after seven months of arguing, bickering, and anger. During that time, Dion was seeking treatment for the red blotches, almost bruise like, that were appearing and multiplying on his body. He started weekly injections of a chemotherapy-type treatment.

Our relationship started to falter when Dion (who was one to not overly-communicate or share) started to shut down and not answer my questions about his doctor’s visits, how he was feeling, if the treatments were working, or what the doctors were saying. Instead, Dion chose not to talk about it. He began to push me away and I slipped into finding “recreational” ways to escape my fear of what was happening.

In short, he saw me as nothing but a nag, constantly pestering for information; and I saw him as an alienating asshole that was shutting me out. Our last fight – the one filled with hatred, yelling, insults, insinuations, and some physicality; the one that resulted in me moving out of our Hell’s Kitchen studio – included me saying something I will never forget:

“God dammit, Dion! If we were married, we would have said the vow ‘for better or for worse!’ Well, this is worse, Dion, and you are shutting me out. You’re an asshole.”
“Fuck you, Scott. Just fuck you,” he replied as he looked at me blankly.

I moved out four weeks later.

In retrospect, it is clear that we were both scared shitless and had no idea how to productively express our fear or help each other through it. This type of thing happened to other people; people you do not really know, but people that other people know. This type of thing was something that you heard about at dinner parties … six or more degrees of separation. Did you hear about so-and-so, the friend of such-and-such? So sad…. This was something that happened in the 1980s and the early 1990s, not now. Not now. Not this. Not us. Not him. Not me.

There was, in fact, no degree of separation in our case. This was close. This was my house. This was my partner. This was the person who would be mentioned at dinner parties. This was real. This was my life. This was happening. Now. This. Us. Him. Me.

*     *     *     *     *

In March of 2009, ten days after his forty-first birthday, Dion was admitted into St. Vincent’s Hospital. He was having major difficulty breathing. He called me after being there three days to let me know. I went to visit him and we started to communicate, not talk – communicate. He opened up and shared his fear and so did I. We began to repair our relationship. The doctors had him on high doses of medications, breathing treatments, and antibiotics. His lungs were spotted with PCP and KS lesions.

I was at the hospital every day to visit with him, sometimes three times a day. I talked with his doctors about his condition, what they were doing, and what the outcomes could be. I translated “doctor-speak” for Dion, who was overwhelmed by the information.

Seven days later, he was no longer responding to any breathing treatments and he was fighting the ventilator that they put him on. His condition was worsening by the day. His doctors felt that the only way to help him was sedation and intubation.

He was sedated for a little over one month. During this time, I continued my daily visits. I would talk to him, rub lotion on his drying hands and feet, and stretch his arms and legs. I also acted as his medical proxy by asking questions and learning about his condition and tests being done, giving answers and information to the doctors, and advocating for his survival by approving treatment options and procedures. I managed his bank account, ensured his rent was paid, paid his other bills, and was the “information and support go to” for friends and family. I couldn’t have gotten through this time without my cousin Shannon. She was there alongside Dion daily. Helping him. Helping me. Helping us.

Dion came out of sedation and spent one month in the ICU. He was still intibated and could not speak, his motor skills were non-existent and he weighed ninety pounds. He communicated by nodding his or shaking his head to yes or no questions. He tried to mouth words. Slowly his ability write – or scrawl – returned. He spent the next four weeks in Acute Therapy after they closed his tracheotomy. He slowly regained speech, and he worked hard to develop full motor coordination by re-learning how to sit up, stand, balance, and how to walk.

Four months after being admitted, he was released from the hospital. He came home to my Upper West Side apartment to recuperate. It was unthinkable to let him return alone to his fifth-floor-walk-up. He was doing physical therapy, walking with a cane, and going to multiple doctor’s appointments. His breathing was still labored, and he was on several strong antibiotics.

*     *     *     *     *

The week after he came home, I was laid off from my job at French Connection. I will forever be grateful for that. You see, five weeks later, Dion was back in the emergency room unable to breathe. The ambulance would not take us to St. Vincent’s where his regular doctors were affiliated. We had to go to Roosevelt Hospital. We spent 15 hours together in a little room attended by a group of unfamiliar, yet very capable and kind doctors. I acted as the “go between” by relaying information and consulting with his regular doctors over the phone.

After several tests, X-rays, breathing treatments, and rounds of antibiotics, he finally asked for some pain medication. Another round of X-rays were done. The ER doctor explained that the most recent X-ray showed the PCP growing quickly and very aggressively. He had lost three-fourths function in his left lung and almost half in his right. The only way to get his condition under control and stable was re-sedation and intubation.

“Do you understand?” the doctor asked me, his hand resting on my forearm.
“Yes. I understand.” My heart sank.
“I’ll leave you two to talk. I’ll be back with my team in thirty minutes to begin preparation. You’ll have to leave at that point.”
“I understand.”
“Scott … I don’t understand. What was he talking about?” Dion asked, a little hazy from the Dulodin.
“They need to re-sedate you, Dion. They have to intubate and put you back on the ventilator. Your body isn’t responding to what they are doing now.” I said.

His eyes focused on mine. He was absorbing what that could mean. He was lucky enough to come out of the first sedation. Chances were slim that he would come out of this one.

“Ok. I understand,” Dion said. “Either way, I’m not scared.”

We had … what I can confidently call … the most amazing and frank discussion I have ever had. We talked about what could happen in real terms – the potential of his death. He was so strong and accepting of what was about to happen to him. I was so proud of him. We talked about what options he preferred if he died (resuscitation, cremation, a memorial). He rattled off a specific list of items that he wanted to give to friends.

His approach to this conversation put me at peace. It was clear he was ready to go. I had the honor and privilege to thank him for what he meant to me, to tell him I loved him more than I could really express, and to say goodbye. He also thanked me for everything that I had done for him and we held hands. When the doctor’s came in, I gave Dion a kiss on his forehead and said goodbye again. As I was leaving the room, I turned and looked back, one last act of ensuring he was OK. He was sitting upright in bed looking at me. He mouthed, ‘thank you’ and then ‘goodbye’ and waved a little sweet wave.

That was the last time I saw Dion alert. I would not trade that Monday for anything in the world. It is a day I will never forget. Six days later, he passed away.

In September of 2009, I wrote about Dion’s Treasure Box.

*      *      *      *      *

I am surprised that I find myself still sleeping on ‘my’ side of the bed. The other side is empty and can now easily be slept in, but my body just does not go there. I look to my right while reading, and half expect to see him laying under the sheets, bedside light off, head on the pillow facing away from me. I reach out to stroke his hair, or his shoulder, or his hip; but there is nothing and no one there. Just air. Just bed. Just me.

The first week after he passed, I left the sheets on the bed a little too long. When I finally washed them and crawled into bed, I couldn’t smell him anymore; there was no trace that he had ever been back in it. Around the same time, I finally addressed his bedside table. His urinal with his last early morning piss still inside, a half drunk Ensure, his cough medicine and the little plastic cup/cap with his lip marks on it, his notebook and a pencil, and some pills. All of it cleared off, and in some perverse way, sanitized of his pain and suffering.

Other items soon made the move from closet, drawer or cupboard to the trash bin, or a donation bag. It felt selfish at first, as if I was singling out his items and banishing them. I kept a few of his favorite t-shirts, his orange cowboy shirt, and his Adidas slip-ons. For some reason, it was harder to let go of those items.

I also kept his “treasure box” that rested on the windowsill since the day I brought it from his old apartment as a surprise. After he was released, he needed some more clothes. He dictated a list and I went to his place to them. I also included a picture of him and his friend Marie and his treasure box.

I showed Dion my treasure box when we first started dating. It holds keys from past apartments whose addresses I no longer remember; tickets from movies, shows, and concerts; trinkets either found or received; and other knickknacks that someone unfamiliar with the contents would see as junk. Mine also includes a piece of paper with his name and phone number on it … a memory of the morning after we met at The Eagle. He started his treasure box soon after.

I showed him the clothes that I brought and he seemed pleased that I got it all correct. I hung up his shirts, folded his jeans, and put away his t-shirts, socks, and underwear.

I told him I had a surprise for him. I reached into the duffle bag and I pulled out the picture of him and Marie. He was so happy to see it and held onto it for a while. We decided that it should go on the living room bookshelves. Then I pulled out his treasure box. He was elated! He went through it and looked at everything again. It was like an affirmation that he had lived before; a life filled with experiences other than pills, hospitals, doctors, nurses, and tests.

Dion’s treasure box was just like mine. His passports, tickets, foreign money, keys, a baggage tag from the Concorde, a box of tea, a stuffed toy Nessie from Scotland, and other assorted “junk” and pieces of paper filled it to the brim. He placed it on the windowsill next to his side of the bed.

It stayed there until recently. Since then, I have gone through his treasure box twice. The first time, one night a week after he passed, curiosity and sadness drew me to dump its contents on my bedspread. Nothing out of the ordinary, shocking, or unexpected lived inside the little plaid box. The other half of the slip of paper with my name and number was inside. I was overcome with heart-broken tears.

The second time, I noticed a pattern with the ticket stubs inside the box. With a few exceptions, each stub was from something that we went to together. Whether a show or a movie, he kept those ticket stubs. Those were his treasures. I was a part of those.

He had a list of items that he wanted moved to what we were now calling “our apartment”. They all made the move, but he never had the chance to see them here. His round white mirror, the tortoiseshell bowls he bought in Paris, the seashells we collected in Mexico, the rocks from Shelter Island, the award statuette for some unknown achievement, the cool and creepy painting of children, the plexi-glass mantle clock, his miniature buildings, the art deco lamp, Buddha heads, and – of course – his book collection.

In every room of this apartment, something that is or was his is around. They comfort me when I see them, to think of him, to remember him. I wish he could enjoy them here with me. And when I see him in bed, or at the sofa when I glance from the kitchen, I know it is a figment of my saddened state of mind.

Someday I will assess that his old t-shirts are taking up too much drawer space and his slip-ons have gathered too much dust, and I will decide to part ways with them.

But … what of the memory of him sleeping quietly next to me, the smell of his hair, the heat of his skin, the feel of his hip? And what of his treasure box?

Well, those are for another story.

*     *     *     *     *


  1. What a gift you gave me, Scott. To share in these moments of love - and watch how your love for each other grew into something more powerful than anyone could imagine. I love you. Many do. We all know our lives are richer from knowing you. Dion knew this too.
    I wish you peace on this anniversary - always.
    Love, CLD

  2. the most beautiful thing I have ever read... i love you...

  3. You are so lucky to have found that kind of love. If only the rest of us could be so lucky. Thank you for sharing such personal feelings and events. I'm glad you are doing good today and have found love again. (?) Love, Wendy Miller

  4. Darling Scott, that is the most beautiful tribute to someone I have ever read. Thank you so much for sharing...and for bringing tears to my eyes. Tears of happy memories...of a love strong enough to survive what most would have not had the strength to deal with. You always say...'love is you'. Well, my is YOU. xoxoxoxo

    ps: my favourite Dion memory was the first time I met him, at El Diablo....and when you went to the bathroom I told him that you said he had hobbit feet. We laughed SO hard! Oh, wait! what about the time when we were at Marie's and he told me that it's okay if we didn't know the words to the song, because we could just sing "Peas and corn....peas and corn..." and no one would know! LOL Oh, wait! what about the time....sigh...too many to choose from. So much laughter, so much happiness. xoxo

  5. wow scott...that was so incredibly moving. not only because of the events and experiences that you went through and were able to share, but because of your beautiful expression of them and your strength. thank you for sharing and bringing tears to my eyes. eyes that have been holding back tears and needed the release.
    truly with love,