What She Said

I keep reading posts from other bloggers that take the words right out of my mouth. 

My fellow widow Supa Dupa Fresh posted a couple of weeks ago on when she got rid of what of her late husband's belongings. I have to say, at this point, almost two years out, I retain little of John's stuff. I have some items of clothing (his wedding suit, a favorite leather jacket, his cashmere top coat) that I save thinking that Riley might wear them someday. Or not. I don't want to pressure him, but I keep them just in case. I have John's comic book collection—he was a semi-serious collector with some pieces that are rather valuable. A friend was kind enough to catalog all the books for me, and I figure someday Maddie or Riley might want to add to the collection or just learn about collecting things as a hobby. I have some of John's books. Of course, I have his wedding ring and a few other personal effects. Most other stuff, though, is long gone. 

The one rather strange thing I keep holding on to is his toothbrush. John and I actually shared a toothbrush, a fact I'm sure many people will find totally disgusting and even more will find to simply be TMI. We had a Sonicare and we both just used the same head on it, out of sheer laziness and the fact that neither of us found that disgusting. We also each had a non-electric toothbrush for times when two minutes of Sonic cleaning seemed like too much of an investment. It's that manual toothbrush of his that I've kept for close to two years now. It's just a standard-issue, post-dental cleaning toothbrush, magenta and white. I don't use it as it was already seriously worn when John died. At the condo, I kept John's toothbrush, my toothbrush, and the kids' toothbrushes in a toothbrush holder designed for a family of four. I would often think about throwing John's out, then decide against it. Then I moved it to CV's. At her house, though, while the cup is still in use, it made more sense to put the three kids' brushes plus mine in the cup since it's the four of us sharing the bathroom. And still I did not throw John's toothbrush away. I just moved it to the medicine cabinet. I'm not sure what my attachment to it is, but it's not harming anything by sitting in the medicine cabinet, so I just leave it there. Maybe next time we move, I'll be ready to let it go.

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The process of stumbling upon a new blog is usually untraceable for me. I click through from here, there, and everywhere and am usually unable to figure out how I got from A to B to C. It's through one of those mysterious voyages through cyberspace that I ended up at Dr. Smak's blog.

She lost a son, not a husband. A four-year-old son, to brain cancer. Recently. Just a month ago. Her writing is unbelievably honest and true, and she takes emotions I wasn't even aware I  had and expresses them with crystal clarity.

Of the many, many things that spoke to me on her blog (which I read beginning to end, without pause, when I should have been working yesterday), there were two that stood out. First, this, on grieving her son's loss, taken from the post A Gathering Storm:

I also found that as a parent, I had a huge sense of relief. I no longer was the parent of a child with cancer. I no longer had to walk the minefield of that life, scanning the horizon for infections, cancer, learning disabilities, emotional scarring. Next time a kid in my house pukes, that's all it will be: puke. Not cancer.

Sub wife for parent, and I feel the same. I've written about my sense of relief at John's death before. It's a feeling mostly unacknowledged in public in regards to the death of someone who has suffered a long illness. Dr. Smak makes me feel less alone, less of an ogre, for having the feeling and talking about it, and I thank her for that.

Her post also talks of a sense of relief at her son's relapse, a relapse that meant his diagnosis was terminal. She writes, "My anxiety level regarding if, when, how he would relapse had been so great, so constant, so unrelenting that to not have to worry about the relapse anymore was liberating. I could just focus on him, on what was next to come, without wondering. [. . .] I no longer had to worry [i]f I would make a bad decision, or one that I would regret."

In my experience, knowing anything is better than not knowing. There are a couple of (comparatively minor) fronts on which I've been in limbo in my life over the past few weeks, and the stress it creates is overwhelming. I become irritable and cranky. I can't sleep. It's awful.

A terminal diagnosis is awful, too. John's diagnosis was terminal from the get-go, but it was a diagnosis. After the waiting around with the testing and the "maybe it's this, no, maybe it's that"-ing, a diagnosis, even an awful, incomprehensible one, brought it's own strange relief. It represented knowledge, a starting point from which to build a plan and to get ready—as if anyone really can—for what was to come.

I don't think John's parents ever accepted his diagnosis as terminal and I think that's one of the reasons they struggled so much with his treatment. They constantly wanted second, third, fourth opinions and talked of flying here and there to see this person and that person. They wanted John to take herbs, eat special food, maybe even get coffee enemas. John did much of that, although not the jet-setting or the enemas. 

Having some kind of acceptance around the finality of the hand John had been dealt, he and I had a somewhat different approach. We wanted to balance an aggressive treatment with a normal life. We trusted John's oncologist and we had done our own research; none of the superstars at other hospitals would have been able to offer anything other than what John got at our local (world-class) medical facility, and by staying where we were, treatment came at the cost of $5.00 copays per visit. Beyond the traditional chemo/radiation routes? John was open to all kinds of "alternative" therapies, but not if they interfered with his daily life and routine. I think many of the alternative treatments he did helped him. But I also think accepting the diagnosis gave me, and John, too, a bizarre sense of peace with not feeling like we had to do everything. We knew there was ultimately nothing we could do to prevent his death. We never had to worry that we hadn't tried hard enough, that we hadn't seen the right doctor, that we hadn't found the right treatment. That freedom from responsibility brought relief, too, and is one of the things that allowed us to go forward with life on our terms.

I don't think we fought any less hard or gave up, although perhaps it sounds that way. It's difficult to express, the feelings of relief and peace and acceptance that surround a terminal diagnosis. There's some strange gift of being given time to say goodbye, time to start the grieving process, time to put the proverbial affairs in order. It's a gift I hope to never receive again, a gift I cannot and would not give. But that is how I chose to take that knowledge and finality, as a wretched, stingy, cheap and tawdry gift, at face value.

I've rambled on too long to cover the other point that hit home for me in Dr. Smak's blog, the idea of living through an ordeal like this as a push towards activism. Next time.