3:26am December 27, 2014

What do you do when…

Someone you know online, has started getting tons and tons of medical symptoms that you happen to have, and it turns out that the final explanation (in their case) is much, much scarier than what you thought it was going to be in your own case?

[Long post, TL;DR version at the end.]

Donna Wlliams has central sleep apnea. I have central sleep apnea. My mother has central sleep apnea. Central sleep apnea is supposed to be really rare. My mom also has an aortic aneurysm which often goes with connective tissue disorders. I warned her of this and asked her if she could get checked out for Ehlers Danlos and related conditions, so that then I could get checked out if she turns up positive.

There’s a lot of other symptoms in common between the three of us, too. It’s not just that. My entire developmental trajectory looks like a slightly milder version of Donna’s – similar cognitive and physical transitions happening at similar ages. Part of what leads me to believe that there are developmental trajectories specific to autism, and that Donna and I share one of them, whatever it is. Like, they don’t have to be identical to be the same basic trajectory, they just have to follow a basic path witha fair amount of room on both sides for error.

Anyway, now after watching Donna’s periodic videos on her health status, I find out that she doesn'tjust have Ehlers Danlos. She has Ehlers Danlos type four. Vascular type. which, if you have EDS, is the last form of EDS you possibly want to get. Lots of people with it die young. Although Donna points out that we don’t know the real statistics, because the people who survive to later ages, and don’t rupture, don’t end up in doctor’s offices and morgues being identified as having EDS type IV, even if they have it.

I’ve always assumed that if I have EDS, it would e EDS type 3. And that still may be the case. But the idea of having one more thing that could easily kill me… I can’t pretend it doesn’t scare me a little. Especially now that I’m learning it’s possible to go into your fifties and later, like Donna, and never get diagnosed.

I’m not afraid of death itself – when it’s your time, it’s your time, and you go. I just spent months preparing my father for his own death, making sure he wasn’t afraid, making sure he’d walk into the Light and be absorbed by Love and open himself up to Love in a way that would allow him to have the best death possible.

And he did have the best death possible. He died beautifully, and peaceflly, nnd at home, and holding my mother’s hand the whole time, and after he died she washed him up and dressed him before calling the morgue people or the coroner or whoever you call. She took pictures, and as she said, they look peaceful, but they don’t look like him anymore. He was gone, in an instant.

Don’t worry, I won’t post those pictures online. They’re too private. But I’m glad I got to see them. I know it’s a cliché thing to say, but it gave me some kind of closure to see him obviously dead, and to see what a dead person that I know looks like, in death. The burial was not a funeral anyway, so I wasn’t going to be attending, just my mom and the guys from the cemetery, who were apparently wonderful people who cried when my mom read her eulogy and mine. (And these were hardened military vets, so the crying was real.) And I was glad for the chance to see him in death, to see how different he looked dead thn he looked living.

It was as if… all the postures – the tiny postures of the face and hands, the ones you never notice but that make up a huge part of how someone’s identity is manifested to others… all those things were gone. And I don’t mean gone in the way that someone with severe neurological damage can look very different from the person you remember from before. I men gone altogether. He looked so totally different. And it made me happy, in a weird way, to see that. To see that wherever he was, he wasn’t in his body anymore.

Apparently he disappeared for a few days, until he was buried. But then my mom and I started feeling his presence again. More her than me – I think she needs him more than I do right now. I’ve lst a father of 34 years, but she’s lost a husband of 50+ years. The + because even though they weren’t technically married, they were engaged ever since she was15 and he was 20.

Her parents made them wait until they graduated high school before they could get married. Or, specifcally, her father did. And I can’t entirely say I blame him. if I had a child who was 15 and engaged to a 20-yer-old, and if I had any say in how the marriage happened at all (that’s where I differ from her father, I don’t believe in exerting that level of control over your children’s love lives, unless you sense a serious danger. Which he might have. I don’t know if it was normal for a 15-year-old to marry a 20-year-old back then, but these days it’s outright illegal in a lot of places. People would question his motives, would see him as taking advantage. When I asked him about it, he said “She was very mature for fifteen.”

Anyway… my grandfather was kind of a jackass, and everyone knew it. I won’t air his dirty laundry here, but suffice to say it ws plenty dirty. But then he got lung cancer. And seeing that he was going to die, it changed him somehow. He took my father on a walk in the woods. On that walk, he said two things:

1. "Thank you for making my daughter happy.“

2. "I’m sorry that I made you wait to get married.”

Those things meant a lot to my father. Especially after he got over the shock of who was saying this to him. My grandfather wasn’t one for apologies, or for showing any sort of demonstrative human feelings. He told me once that during World War II, where he was a medic, he saw a man whose buddy had gotten killed. He didn’t go into specifics, probably didn’t have specific diagnoses back then anyway, but he described the man as going insane and never recovering. He told me that then and there, he resolved to never develop a close attachment to anyone.

i’m not sure he succeeded in that. If you’re prone to developing even small attachments to people, you’re going to form them whether you want to or not. And you can pretend those attachments don’t exist. Which it sounds like he did – my mom always described him as “emotionally undemonstrative” in a way that sounded traumatic to grow up around.

But one thing about death, is that often the closer you get to it, the more it unmasks who you really are. And my grandfather, though he wanted to look tough and impenetrable, was not, and the chinks in his armor got wider and wider until he was able to apologize to my father, and tell him how glad he was that he made my mother happy.

I can’t imagine how my mother must feel right now, having lost her father and husband to cancer. With her father it was definitely lung cncer. With my father, his lungs and the area around them were heavily involved, but so were his bowels, kidney, liver, pancreas, and assorted glands… we still have no idea where it started, and never will. Which is barely important. What’s important is that he’s gone, and that our family have to collectively pick up the pieces and get on with our lives in whatever way we know how to do it.

The way I’m doing it… I’m reading that book, and I think the two ways I handle grief are being the Memorialist and the Seeker:

Here are the 5 identity types that Berger says represents different ways of grieving a loss:

Nomads are characterized by a range of emotions, including denial, anger, and confusion about what to do with their lives. Nomads have not yet resolved their grief. They don’t often understand how their loss has affected their lives.

Memorialists are committed to preserving the memory of their loved ones by creating concrete memorials and rituals to honor them. These range from buildings, art, gardens, poems, and songs to foundations in their loved one’s name.

Normalizers place primary emphasis on their family, friends, and community. They are committed to creating or re-creating them because of their sense of having lost family, friends, and community, as well as the lifestyle that accompanies them, when their loved one died.

Activists create meaning from their loss by contributing to the quality of life of others through activities or careers that give them a purpose in life. Their main focus is on education and on helping other people who are dealing with the issues that caused their loved one’s death, such as violence, a terminal or sudden illness, or social problems.

Seekers look outward to the universe and ask existential questions about their relationship to others and the world. They tend to adopt religious, philosophical, or spiritual beliefs to create meaning in their lives and provide a sense of belonging that they either never had or lost when their loved one died.

In my case, the Memorialist and the Seeker are intimately intertwined. Memorializing my father feels like a sacred act. My ancestor shrine, which now has a photo of my father on it and I’m awaiting one more photo of him, plus going to put my great-grandmother there as well – includes small statues of ancient gods associated with death and rebirth. It’s smaller and separate from my main shrine, and for the most part includes different gods.

But the bottom line for me is that these are concrete, solid ways of remembering my father. Dressing in his clothes and hats every morning has become a sacred ritual in its own right. The sense of remembering my father, and the sense of reaching towards the spiritual to make sense of my loss, are so interconnected i’m not sure it would be possible or desirable to detangle them and say which is which.

But I’m very grateful for this book’s existence, because it hs a lot of useful advice. The author is someone who lost a parent at a young age and is still dealing with the aftermath as an adult. They’re not just some psychiatrist or armchair psychiatrist pontificating from on high, they are someone who has lived the experience of grief and have helped countless others deal with their own grief.

Anyway… to get back to the main point of my post… what do you do when someone who has always had very similar physical and cognitive attributes to oneself… and it turns out that a lot of those attributes are connected to a really scary condition? I mean… I know that I’ll die someday, i’ve made my peace with that a long time ago when I was sure I’d die of adrenal insufficiency before anyone diagnosed it. I already feel like I’m liiving on borrowed time, in a way. And I also know that Ehlers-Danlos type symptoms run on my mother’s side of the family, including organ involvement, but that nobody’s ever been tested or diagnosed with connective tissue disorders. I’ve come the closest with my diagnosis of hypermobility syndrome, which they think now is just another variant of EDS type 3. But if it turned out to be type 4 or one of the other more dangerous ones instead, that would really suck.

But I’m good at dealing with a sucky body. I’m really good at dealing with a sucky body. I’m better than nearly anyone I know at dealing with a sucky body. So whatever happens, i’m ready. I just hope I don’t have to be ready, if you know what I mean. But… whatever happens is going to happen, and worrying about it won’t do me any good.

TL;DR: I keep reading about Donna Williams and this array of physical symptoms she has, and they’ve always been too close to home. Then I find out she has Ehlers Danlos type 4, which is the last kind of EDS you ever want. It’s of course more probable that I have Type 3 or hypermobility syndrome (some people think those are the same thing, other think they’re different – of the ways they differentiate most often, I seem to fall on the EDS side). But Type 4 is kind of scary. Also, lots of discussion of my father’s death, grief, mourning, how we mourn, etc.