This photo was taken for my friend V. a little over a year ago. If you want to know what it means, you're just going to have to read - sorry! I’ve been feeling the need to blog about my friend V. for about a month now, but I haven’t because I just couldn’t face it. It’s been a little over a month since the one-year anniversary of his passing. Fighting for a cure is a war, and V was one of the brave soldiers that died looking for the elusive peace.
I’m not sure if I ever met V. in person. I have no idea what he looked like, although he said he was at the first Hermansky-Pudlak Syndrome Conference I attended. He didn’t remember me either. He missed the next two conferences because he was too ill to attend.
I first met V., at least that I can remember, on the telephone. A medical professional we both knew called me one day, and in the conversation about many other things, he mentioned “this other patient” who was seeking a lung transplant and feeling a bit down and frustrated. The medical professional wondered if I’d mind befriending V. and perhaps offering some moral support. I agreed, and after seeking V’s permission, he passed along V’s phone number.
I didn’t call it for about a week. What would I say? How do you call someone up and explain that one of their care takers is worried their depressed so you, this person they don’t know from anywhere, is calling to cheer them up and see if any further help could be provided. How awkward is that?
Knowing that V. had been diagnosed with HPS much longer than I had, I decided the best approach was to call seeking his advice. I carefully wrote out a list of questions to ask him, most of which I already knew the answers to, and timidly dialed the number.
On the other end I was met by a thick Jersey accent and the most vibrant personality you could imagine. V. was the kind of guy who instantly became everyone’s best friend. If he was depressed, he was a great at hiding it.
Lung transplants are very hard for patients with HPS to obtain. To date, there have been two that I know of, both successful. But, because HPS is so rare, and because it involves a bleeding disorder, too often by the time the doctors get serious about talking transplant, they waste precious time trying to understand the syndrome, the bleeding and deciding whether HPS should exclude someone from being eligible for transplant.
V. was in the midst of this process and having a hard time negotiating it. Besides the usual HPS hassles, V. was single and trying to prove to the world that there were enough people who loved and cared for him that he had the support system necessary to make it through the transplant process. One of the cruel realities of transplant is that there just aren’t enough organs to meet the need, especially for lungs, so even being considered is grueling. Understandably, the professionals don’t want to award lungs to someone who wouldn’t have help keeping up with the busy medication schedule afterwards etc.
But just because V. was single didn’t mean he didn’t have family. He’d created an adhoc family of friends and clergy who cared for him until he died.
His next door neighbor regularly came over to cook with V. (who had been a chef) and eat with him. He’d worked for emergency medical services at one point, and so had a regular army of EMTs that checked in on him daily. He had a visiting nurse, people from his church and his priest – all of whom checked in with V. daily. Several of them would have gladly moved in for a while if V. had made it onto the transplant list. He never did.
I saw in V. my possible future. Like V. I’m single. Someday I’m going to have to fight for a lung transplant too. Will I be able to prove I have a strong enough army of supporters willing to put their own lives on hold to care for me through the transplant process? If I had to prove that today, I’m not sure I could.
I called V. every few days for the roughly six months I knew him. We talked about a wide variety of topics, from cooking (he couldn’t believe anyone would view cooking as a chore and gave me crap about it all the time). We talked about family, about love, about childhood memories, about HPS and the fight for a cure and about dying.
I was supposed to be cheering V. up, but he’s the one that constantly cheered me up and helped me through some early diagnosis days. There wasn’t a time I spoke to him that he didn’t make me laugh. He was the ultimate flirt. I could easily picture him with a tribe of girlfriends because he had that kind of charm.
As the HPS family conference grew closer, V. was making plans. I suppose this is true of other diseases, but those of us with HPS have a bond that is incredibly strong. I can’t explain it – but many of my HPS friends that I never see and only talk to online or on the phone are some of my closest friends, some just as close as family members. V. felt the same way about his HPS friends, and having missed the last conference because of illness, he was determined he was going to make this conference.
But several days before the conference he got a cold. He couldn’t talk on the phone for long without coughing and sounding as though he was in pain. When he called to tell me he couldn’t come, I could hear his voice cracking on the other end. I think he was trying not to cry in front of me.
I had been teasing him for weeks about being a ladies man, on the prowl at conference. So, I teased him again and said something to the effect of all the trouble he was going to miss, and I’d just have to create some and report back frequently on my phone and take pictures. Don’t get the wrong idea about V. In many ways he was a very religious man, but he had a sense of humor too and eventually this morphed into the running joke that V. was upset about all the “scenery” he was going to miss out on i.e. beautiful women and their various parts that men with wandering eyes tend to settle on.
So, several of us conspired to cheer V. up by sending him a big poster with pictures of various people posing for him (in a joking way) showing off their legs, shaking their backsides etc. Don’t worry, it was all clean! We were going to title it “This Butt’s for You!”
As conference got underway V. took a turn for the worse. He was placed on a respirator and we weren’t able to talk to him. I dutifully collected the necessary camera shots for his poster.
He recovered briefly and was home several days. I didn’t finish the poster, swamped by the work I had when I got back. Then, that following Sunday V. called and left a message on my phone. I was home, but I didn’t answer. I was tired, and feeling overwhelmed by several other HPS tragedies. I needed a break, and promised myself a night off. (I can’t read caller ID so I didn’t know it was him.)
Later that night I checked my messages. V. was calling several of his friends that night, he said. He said he just wanted to chat with everyone, catch up, and touch base. He said not to worry about him, that he had a kind of peace that he hadn’t had in a long time. He asked me to call him back, but not if I didn’t get home until after 8:00 pm because his priest was coming over to give him communion and celebrate a private Mass. So, I didn’t return the call thinking I could do it in the morning, and not wanting to interrupt V. and his priest.
By the morning V. had once again been rushed to the hospital, only this time a different hospital.
One of the hard things about friendships like the one I had with V. is that because we don’t live close, none of his friends knew me. I’m sure none of them knew how often we talked or how close we’d become. So, when something like this happened, no one ever called to tell the HPS world.
When I couldn’t reach V. for two days (he always returned calls, and when you’re on oxygen, you usually don’t go far), I feared the worst. I left desperate messages on his answering machine, hoping his neighbor would check in on his place and hear one of them. I got on the internet and created a list of every hospital I could find within an hour of where he lived and I started calling every single one of them asking to be connected with his room as I tried to get around the privacy rules.
Finally I called a hospital who told me they couldn’t connect me to V’s room because he was in ICU, but that they’d put me through to the nurses station. I knew I’d found him. As the call was transferred, I prayed I’d get a sympathetic nurse who would bend the rules a bit and tell me what was going on. I explained who I was, that I was Director of Outreach for the Hermansky-Pudlak Syndrome Network, and that all of his HPS friends were worried about him etc…..This went on for several days. Sometimes you’d get a cooperative nurse, and sometimes one that wouldn’t tell you anything. Then the day came when the nurses started saying that if we wanted any information, we’d have to talk to the family. I knew that probably meant he’d died.
Oh how we wanted to talk to the family, but they didn’t know us, and most likely had no idea how upset and worried we all were. Eventually one of V.’s friends called me. She got my number off his answering machine. She told me she’d send me a copy of the obituary and call me back with information about the memorial, but she never did. His sister called another HPS’er, and promised to send her a picture, but it never came.
We’d all had this special kind of intimate relationship with V. loving him and supporting him and fighting this war together – and then suddenly we were cut off. There was no information, no memorial – nothing.
To this day I feel guilty that I didn’t answer the phone that night. I know that V. was calling to say good-bye; although I’m sure he wouldn’t have said so in so many words. For a year his message remained on my cell phone. I couldn’t bear to listen to it, but I couldn’t erase it either. Every time I’d check messages my stomach would tighten and I’d quickly skip over the oldest one. Finally, Sprint put me out of my misery and deleted it for me.
Every year at conference we have an early morning memorial service for those of us that need to grieve people like V. We do it quietly, in the early morning, away from the rest of the conference so as to not take away from the upbeat and positive atmosphere of the conference. This year I’d planned to say something about V.
I overslept and was late. As soon as I entered the room and saw everyone rubbing the tears from their eyes, mine started coming with a flood. It was all I could do to not simply whale – there was no way I could stand up and say anything, and so once again I let V. down.
I suppose that’s why he’s been on my mind so much this last month. I want to remember the part of V.’s story maybe even his own family never even fully knew – how brave he was. It took courage to keep fighting with the doctors. It took selflessness to look after all his HPS friends when V. was so sick himself. It took an incredible personality of life to bring together all the people V. had around him. He never complained, even when I really worked at trying to get him to vent. He was stoic and saw a meaning in everything that happened to him.
So, for V. – this butt’s for you.
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