#and that unwritten email has been occupying my brain for a week and i know i will feel better when i do finally write it but i just can't

[lyxchen]

Having adhd sucks so bad, I can't even clean my room. I can't even write an email. I can't even shower regularly, I feel like I want to do everything at once and then I end up doing nothing and it's so frustrating!!

[rilenerocks]

The other day I exchanged messages with a friend I’ve never seen. We met in an online Merkel Cell cancer support group. Her husband was a decade younger than Michael when he was diagnosed with Merkel, in his early fifties. The course of his disease was short, less than a year and a half from discovery to death. I got banned from that support group after being in it for a little over a week. I was bringing up questions about emotional issues rather than just talking about the nuts and bolts of the disease and its possible treatments. After I was kicked out, this friend begged the administrators for my email address and we’ve been corresponding ever since. The anniversary of her husband’s death was last week and I always check in with her on that day. I expressed my hope that she was getting along well and had found some space for small joys in her life. When she answered, I felt like she was troubled by her current emotional state. She wrote that we’d both had wonderful experiences in our marriages but that now we had to learn how to live again in real time. That caught me up short.

Live in real time? I’ve been living about as hard in real time as a person can, in my opinion. Since Michael’s death, I’ve traveled alone several times, organized my 50th high school reunion and seen my favorite tennis player, Roger Federer, twice in real life tournaments for the very first time. I’ve been to half a dozen music concerts from John Prine to Pete Yorn to Janis Ian and Paul McCartney, among others.

I swim five days a week. I go to movies and have joined a book club. I’m going to serve on my city’s historic preservation committee. I’ve taken a number of classes, had both my knees replaced and knocked many items off my to-do  list. Isn’t this living in real time? I think what she meant was that my constant emotional engagement with Michael means I’m living in the past. But that’s simply not true for me. Our long and deep emotional connection is still alive in me. He’s only been gone a tiny percentage of the time we were together. And he’s not going anywhere, not out of my head or my heart or my soul.

But that seems to be a point of contention in regard to how people are “supposed” to be after a death. Michael isn’t in my way in terms of daily life. I am. He doesn’t interfere with what I do. He didn’t when he was alive either. And that’s the way it is.  I thought to myself, this exchange is another case of more and less, the story of my life. I am always talking about the things which are “more” while many around me could do with a little “less.”

I certainly know more now about lots of things than I ever have  in my life. And that “knowing” is not yet close to its endpoint. I’m learning every day. I’ve always been learning. I’m motivated. As long as my brain is healthy I expect I’ll continue increasing my stash of both useful and useless facts and ideas. I retain volumes of it, stuffed in the corners of my mind. And I like to talk about it all. In traditional terms that seems ok. Certain areas of my conversation are acceptable. For example there are topics which are nice and neutral. There’s gardening. Sometimes there’s politics, although I can’t say I’m exactly neutral in that regard. But there’s  school.  This fall I’m taking three classes. One is about current affairs in the Horn of Africa about which I know very little. Another focuses on Persia and Rome and will feature readings from Herodotus. I’ve always wanted to read Herodotus, especially after watching the smolderingly sexy Ralph Fiennes carrying around a battered leather copy of his histories in the film The English Patient. The third is about early Scottish history. I know a little bit about that, but after watching the Outlander television series with the equally smoldering Sam Heughan, (who just happens to look like my husband when he was young,) I figured it couldn’t hurt to learn more. I’m a curious mixture of intellectual and pop culture knowledge – I can disappear into the classics world and pop back into current entertainment pretty seamlessly.

I was taking biology classes for a time during the past couple of years. Another socially acceptable conversation topic. But the science class offerings this fall weren’t that interesting to me this semester and frankly, I’ve got enough cancer stuff happening in real life without exploring more theory right now. Fucking cancer. I know several people who are actively engaged in their cancers, some of which are new and others which are old pals that lay dormant for a long time before reappearing in new places to create havoc. Now I’m moving into the “more” arena. This is where things get uncomfortable in my world. For example,  I think that the majority of people who live for a long while will get cancer. We actually have it every day, mutations that crop up at the genetic level but are squashed and eliminated by healthy immune systems. That is, until the mutations get tougher or the immune system gets weaker. After all my years of reading, that’s what I’ve concluded. Some treatments buy time. Others are still primitive. You don’t get to know whose body will react poorly or positively to what is attempted. Until there are wholly individual treatments that’s the way it’ll be. So where does that take me? I try to be a helper and do what I can for those I know.

I think about myself too. I have no idea when my turn might come. I think a lot about the advocacy I was able to provide for my family and most especially my husband. Will I be able to advocate well for myself if necessary? That’s one question I have no answers for at this point. I think about this stuff a lot and I try talking about it but my kids don’t like it and some friends are taken aback. They say what I know they intend to be nice, defusing comments that move rapidly away from the morbid topics. I guess that having thought about death for all the years during Michael’s illness, coupled with my longheld death anxiety from my childhood, as I watched my mom go in and out of hospitals, has locked me into what some think is the morbid side of life. To me it’s more practical than morbid. But it’s one of “those” topics that I tend to bring up that is off-putting to a lot of people. When I talk about it I’m not sad or scared or maudlin. I’m just wondering. Death is something that will happen to everyone and pondering it doesn’t stop me from living a reasonably positive daily life. But the death arena fits into the “too much” category.

The issue of my feeling Michael’s presence so often is another “more” topic. I guess it makes some people uncomfortable. Maybe they think I’m nuts. Maybe they think I’m not living a healthy life. I don’t view other people’s opinions as my problem. I’m open to sharing but am also aware that red flags pop up when I start waxing eloquent about my “ghost.” I can feel that it’s time to move on to something else, a subject more palatable for whomever is the listener.  It seems that I’ve always brought up issues that no one wants to talk about. Michael used to say that if I would only be quiet about certain topics life would be perfect. But I never believed anything was really perfect. Rather, I thought that if you kept working on problems or disturbing ideas like death, or basically anything that caused people psychological discomfort, that the process itself was almost more important than the end goal. I really enjoy thinking and discussing and sorting through virtually everything. I always thought that the more I knew about any issue, the better off I’d be. Michael, more reserved and less prone to the deep inward dives I do, loved me enough to go outside his comfort zone, sometimes kicking and screaming, into places he’d rather have ignored. In the end these explorations brought us incredibly close and gave us the stamina to go through our personal challenge that ended with his death. But what’s perfectly clear to me is that a lot of people prefer doing with less of these internal explorations into what I think are life’s and death’s fascinating mysteries. So when I bluntly bring up one of the off-limits topics, I’ll often feel the invisible hand up in my face and I know I’m supposed to be quiet. Despite the fact that I think we humans share a considerable amount of commonality in life’s essential business, talking about those things out loud just doesn’t happen enough for my taste.

There are all kinds of self-help books and advice websites about virtually everything. But say I decide to open up a sex conversation? Lots of people cut me off fast. I want to talk about how dreadful it feels for me to acknowledge that this most essential part of my life is over. I know that because I’m completely uninterested in being with anyone but Michael. But my drive isn’t dead. I’m going to miss intimacy and kissing and being touched in the way you build with bonds with another person for as long as I remain cognitive. But that’s a “less” conversation. I often wonder what other people feel and if they’re still sexually engaged but I rarely talk about this stuff because it feels like I’m crossing a social boundary line. Maybe I am.

I just think there’s comfort in sharing information and feelings that to me, must be widespread across our species. Am I outrageous? I guess some people might think that. But to me, I’m just myself. I’m still struggling with the separateness that I feel when shut down by the unwritten rules of social exchange. I just can’t stand all these implicit boundaries. Still, I have to live in the culture I occupy so I mostly abide them. More and less. Death and illness and sex are apparently for my private ruminations except for a very few people who accept me for who I am. With the others I guess I can talk about taxes and the weather. I’m glad I still feel Michael so strongly inside me. I can still talk to him about anything and he knows I’m living in real time. With a vengeance. Another thing he always told me was that he thought I was very polite to ask him his opinion on an issue when we both knew I would do exactly what I wanted to no matter what he thought. Still valid. Ultimately, I really don’t care what anyone thinks about my choices. But I’m pretty sure they’d like them if they gave me a chance to say more.

More and Less The other day I exchanged messages with a friend I’ve never seen. We met in an online Merkel Cell cancer support group.