Where have all the friends gone?

Before H was diagnosed, we had lots of friends...friends accumulated over 10 years before he got sick. His friends, my friends, and our friends. Gay, straight, bi-, trans, and poly...you name it. B-day and anniversary parties would have ~50 people at our home and almost 100 showed up for our wedding, which we did on our 10 year anniversary.

When he was first diagnosed and in the hospital near death at 120 lbs, some wouldn't (should I say couldn't) come visit. Some wouldn't talk to me again after I told them he had AIDs. Some of my friends from college (mind you this is 20 years after college) just said, "I can't handle it. I've seen too many get sick and die" and poof, they were gone from my (our) life forever. I understand that some of them watched their friends/lovers die and can't deal, but it hurts nonetheless.

Ironically, it was the gay friends who disappeared the quickest. Not returing phone calls, not extending invites anymore, not even rsvping to events they had attened each year for 10+ years. So much for supporting your own.

It nets out to losing proably 3/4s or more of our friends since H got sick.

I guess that this "attrition" is not all the unusual when someone is very sick, especially when it's terminal or when the illness affects their mind. A neighbor of ours had lung cancer and her husband tells me that many, many of their friends accumulated over 40 years of marriage just disappeared. Just like happened to H and me.

God knows it IS scary to watch someone get very sick, to know that they will likely die from their illness, to see them change physcially and mentally. But we will all face illness and death, whether our own or someone that we love. I hope that when these former friends are in failing health or someone they love is that their friends stay around.

I think that people don't know what to do or say...don't know whether to talk about the illness explicitly or just chit chat or anywhere in between. I think that people also don't know what to do...perhaps they want to do something, anything to help...and they really can't change what's happening no matter what they do so there is a feeling of powerlessness. And, let's face it, mortality is not pretty, nor fun, nor sexy.

H and our neighbor both said that what we say isn't as important as just being there for the sick person. Just holding their hand or just sitting in the same room, telling them that you love them and talking to them as a friend. Simple. Why is this so hard?

Take me there...where?

After the last trip to the hospital, H is not allowed to drive for awhile (6 months or so...or until Dr says it's OK). So, I play taxi driver as well.

We were going to his new dentist, whose office he has been to once, but I've never been to. He tells me that its "across the street from the YMCA." So we head there and pull into an office park. We look at the directory. No dentists here. Luckily, H has the dentist's business card in his wallet. The address is across town, less than a mile from our house.

We were going to see his pain doctor in a nearby large city (we live in the 'burbs). I had been to that office before, so I headed there. But when we got close, he said, "No, no. It's over there," pointing at the main hospital tower. I said that I didn't think so, that it was West of hear a few blocks, but OK. We go into the medical tower and nope, no Dr. of that name here...no pain clinic either. We ask around and finally find out that, indeed, the office is where I remember. H was very puzzled at first, claiming that he had never been in this building. But we had both been there together at least 3 times in the past few years.

Hard to realize that you can't depend on someone's memory anymore, even for simple things.

Chess as a metaphor

H has been after me to play chess with him. He and I used to play quite a bit in our younger days and we were both pretty good, I think...well, at least good enough so that we each won 1/2 the time or so.

So, we sit down to play chess, at H's request, for the first time in over a decade. I spent a 1/2 hour or so reminding him of the rules, showing him how pieces move, and some suggestions on opening play. I can tell that he has a hard time keeping up.

After a bit, H looked very distressed, began to cry. "What's wrong?" I asked. He has a look of great pain on his face. "I can't figure it out anymore; it's overwhelming. Put it away." I go over and hug him, kiss him on his head, tell him, "I can't remember parts of the rules myself, it's OK." "No, it's not," he says. "Here I am 46 and I can't remember how to play and I can't figure it out now."

And I think to myself, if chess is this hard, this overwhelming for him...how does he experience life then?

Damned power ballads, take 2

So I go to the chiropractor to get an adjustment and I'm sitting there and they're playing some power ballad.

After All that we've been through,

It all comes down to me and you.

I guess it's meant to be,

Forever you and me, After All.

Now, I've never been a Peter Cetera fan at all and this song has never gotten to me before, but tears started to well up and I had to leave the office right then. I had two employees follow me out, but I told them, "I just can't deal with the music right now" with tears welling up in my eyes and my voice cracking. Geez and I'm this much of a mess when he's still alive.

They used to play dance music, definitely better musak for me these days.

My poor sweetheart...

Another bout of seizures last week. Two visits from the medics and two trips to the ER in an ambulance in two days. And another week-long stay in the hospital for H. A bunch of tests and more medication. And then home and "can't be alone" for a few days; can't drive for at least 6 months. I am happy that they are working to control his seizures (and it seems to be working now), but I'm also concerned about his other health issues.

We'll find out in a few days if the current HIV anti-viral treatment is working for him. He certainly looks and sounds better than a month ago.

What I'm most worried about is a degenerative brain disease that they discovered H has about two months ago. It's called PML (Progressive Multifocal Leukoencephalopathy), it's rare, and there's no cure. It basically destroys the mylein sheath around nerve cells in the brain and also destroys that cells that product myelin, so the body can't repair the neural damage. His brain is actually shrinking, fast, due to the loss of the myelin. It's sorta like having a bunch of wires bundled together, but some of them are missing insulation and shorting out. Hence the seizures. What they do know is that the best way to control it is to keep HIV virus levels low and we're waiting to see if that's the case.

H has had HIV dementia for a number of years; 8 or 9 now I think. So, he's been a bit forgetful, a little slow on the uptake in conversations, and kinda clumsy and strange sometimes. But now, with the PML, he's forgetting things like "back way" routes through the neighborhood that we have lived in for over 20 years, forgetting how to use computer programs that he once had mastered, and, most frightening is that recently he's forgotten how to tie his shoes and stands staring into space, "daydreaming" he says, for long periods. Sigh. He continues to be the sweet and very funny man that I fell in love with and I am greatful for that at least.

From the National Institute of Neurological Disorders and Stroke (www.ninds.nih.gov):

What is the prognosis (for PML)?
The course of PML is relentlessly progressive. Death usually occurs between 1 and 4 months after onset, but there have been a number of reported cases with survival for months to years.

Now, H's doctors tell me that "I've had patients survive for a year or two if we can get their HIV levels down" and "very few go into complete remission...so there's always going to be some progression." Sigh. He was diagnosed with PML about two months ago, which was when we though he would die shortly and when I started this blog. We don't know what to plan for...when he might die, for example. But I supposed that none of us really know that anyway, it's just that we all hope we live long enough and that seems far away.

My poor sweetheart. He's been so sick, in so much pain, and now, he's losing his mind and that seems to be accelerating. He says he's not afraid and I am grateful for that too.