27 March 2009

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.

19 comments:

Katherine said...

Wow. Well written and moving, and so true. My husband had pancreatic cancer and died three years ago this month. We were lucky in some ways--he lived for 4 years and most of the time was doing well, up until only one week before he died. It's not that I wasn't sad, heartbroken, grief-stricken, overwhelmed when he died. . .but there was, in addition to all those feelings, a sense of relief that it was DONE. The dreading of new symptoms, the fear of test results, the not knowing when this disease would finally win. . . that was all, at long last, over, and my kids and I could start the next phase of healing.

Karen said...

For a few years after my mom passed we kept her shower "koosh" (scrubbing thingy on a string) haning in the bathroom. Everytime the shower was cleaned, I just re-hung it on the hook - though I also thought about throwing it away. Eventuallly I got some tile woek done in the bathroom and someone (not sure who) threw away all 3 of the kooshes in the shower. I was sort of relieved tht it was gone because I am not sure when I would have gotten rid of it.

Glad you are having a similar thing.

Anonymous said...

I can't even imagine, and I hope I never will know what you know ... but the breathtaking clarity that is in your writing always brings me close to understanding. Thank you.

... leslie

P. Gardiner said...

It is so odd that you would write this today. My husband is currently away on business and when I went to brush my teeth this morning it hit me. I miss the toothbrush. I don't like the empty spot. I decided that when he goes I'll keep his toothbrush. The half empty bed didn't bother me, it was the toothbrush! I suppose the empty bed could just be him staying up late to work or something, whereas the toothbrush is a sign of permanence. I don't know what it means that I didn't think of the kids' toothbrushes being gone.

Watercolor said...

Maybe the toothbrush is the last intimate personal thing you have and it is just comforting to have on some level.

Emily said...

I'm currently trying to get a difinitive diagnosis for my dog's cancer. She is my child. To me your post is everything I want to have right now. I want to know what she and I are going to deal with. I feel lost not knowing and I'm certain that I will feel comfort in the finality of a diagnosis. Thank you for writing this today. I very much needed to read it.

Nikki said...

This post floods me with memories of my mother's death when I was a teenager. Substitute daughter for parent or spouse, but any way you experience it, a long illness that ends in death is heartwrenching. I remember laying on a hospital couch, crying, and asking God to just take her, if that was his plan. At the time I was just ready for her suffering to end. Looking back at it now, maybe it was for me that I needed an end to the suffering, when maybe she could have kept it up. Either way, she died that day, and the mixture of relief for an end to suffering, and guilt for feeling the way I did, still lingers, 12 years later. Maybe for some people the hurt goes away, but for me, I think I am better off accepting that it will always hurt. Maybe I am wrong, and will be happily surprised one day to find it not there. I can hope so at least. My heart goes out to you raising two little angels without their Daddy. And here I am feeling sorry for myself for not having more time with my mother. A little perspective does me good I suppose =) And knowing that grief is universal brings us all some comfort.

June said...

Stacey: This blog always brings thoughts of 'how I would handle' raising my 2 children alone, had their father passed away. I relate totally with Nikki regarding the death of her mother. My Mom suffered much pain before her death in 1991. Seeing her suffering, for such a long time, it was bitter sweet when she drew her last breath. Knowing she no longer suffers is quite comforting. I keep several articles of her clothing - now & then I have to bring them out & 'smell' her scent...strange, huh? But it brings peace & comfort to me in accepting her death. I have lost a brother & two sisters. In all circumstances, death was welcomed after witnessing their pain. You have enlightened me in many respects in accepting death as a part of life. FYI - Presently, I have another brother suffering -- ill since New Year's Eve. Witnessing his suffering is difficult, to say the least. Sometimes it just brings comfort knowing those who've passed away no longer suffer. Seeing this brother go thru horrible episodes makes me realize how grateful I should be each day I have being healthy. May the One who brings healing to us who have lost loved ones, be especially close to you.

Lizard said...

I love what you said. I read Dr Smak's blog a few weeks ago, and it was really beautiful and made me ache-- much like I felt when I first came across your blog. The way you describe how information makes you feel is much how I felt going through infertility treatments before we adopted. There were many places where just having the information, even if it wasn't what I would want to hear, was such an enormous relief.

It makes sense if you have ever been through it in any way at all. Infertility is nothing compared to the death of your spouse or the loss of a child, nothing, but the emotions are similar and the description you give is exactly how I felt at the time. thanks.

django's mommy said...

I know we're not supposed to compare death stories and/or grief, and I think I have probably said this before, but sometimes I am 'glad' that J died suddenly. I am sure I would have gotten through it if I had to watch him suffer, but... oh. I can't imagine it.

I still have a fair amount of his 'stuff'... too many clothes, his dopp kit, tons of books, music, his pottery, his canoe paddle... maybe someday I will pare down more. Maybe someday.

Terri said...

You nailed it, again. When my mom died last year, my dad wanted to get rid of her clothes pretty quickly. Most of it was easy to get rid of, even though there were some items that I couldn't bring myself to part with, even though they now just take up space in my own crowded closet. But her shampoo bottle is still in their bathroom, and countless other items like lotions and powders and make up. It's funny what we hold on to.

While I would never wish a terminal diagnosis on anyone, and hope that I never have to deal with another, it was a blessing in that we had 4 months to take stock, say the things that you never get around to saying, and Mom had the opportunity to tie up all her "loose ends." And I know that relief, as well. And the guilt that accompanies it. ;)

Thanks for sharing. As always, it seemed to be just what I needed to hear.

parodie said...

This is interesting, eye-opening, touching. Thank you for sharing.

Donn24g said...

Thank you for sharing, this was a beautiful post. For someone who has no relatable experience to relate to you. YOur honesty and sincerity touches my heart.

Jenny said...

It's funny what we keep and what we toss. I cleaned out my husband's visible stuff from the bathroom (toothbrush, shampoo, razor) quite soon after his (sudden, unexpected) death, and replaced them with a pretty vase and a decorated box that had contained a gift he gave me. But his drawers in the bathroom and dresser, and his closet, are still full of socks and underwear, t-shirts and button-downs, pants and shoes. I guess I didn't want constant reminders that he should be here but wasn't (an unused toothbrush in plain sight), but as of 11 months after his death, I can't let go of the thought (channeling Joan Didion) that he might return and need his shoes, tucked away out of sight in his closet.

Christine said...

Snick, you are one of the first blogs I look at in the morning, and I am always glad I stopped by. Your writing -- and you -- are both amazing. Keep it up. And if you ever want to have that cup of coffee, Boo and I are up for it.

OTRgirl said...

Well said, as usual. I like that you have a quirky sentimentality (to match your humor...).

For me, it's the items of clothing that my Mom made. I rarely wear them, but she rarely finished the projects she started and it seems wrong to get rid of anything she DID complete.

Now that I'm married to an oncologist, how I'd approach a cancer diagnosis feels really different than what I used to think. I suspect my thinking would be closer to what you and John did. Be realistic, enjoy what I can, but not pushing to create a 'miracle' if there isn't one.

Supa Dupa Fresh said...

Thanks for the shoutout! How can I take the words out of your mouth? You always take them out of mine.
X
Supa

Megan said...

So well written.

I was so glad yet so upset that my father was never diagnosed with anything terminal. There one day, gone the next. I am so thankful it was never a constant worry for my family of his passing, almost like a time-bomb situation, but so ungrateful for the fact that I never really knew it was coming and didn't get the chance to appreciate the life he had left.

Soon after my father passed, I met someone (who came to be one of my best friends) whose father had been diagnosed with cancer a few months back. He had months to say goodbye to his father, but every moment that passed I could see it weighing down on him.

Either situation is tragic, but such is death. Thank you, as always, for your perspective. You are an incredibly strong woman.

-Megan

Roads said...

Thanks very much for another thoughtful post.

Although you might feel alone in putting forward some of these ideas, including your sense of (contradictory) relief at reaching the end of John's journey, I hope I can assure you that you're absolutely not alone since many other (and possibly even all) carers must sometimes think that way.

I'm looking forward to you extending the discussion where you left off. Using this experience as a push towards activism. Now there's a topic for discussion.

I've probably written before how Kate Boydell once wrote that bereavement had changed, and finally enriched, her life.

I wouldn't go quite that far, but I share your embryonic view that it presents huge opportunities, all the same. They're not ones which you would have sought out, but once granted, they're simply not to be ignored.

So far I haven't been out there storming any barricades (although with G20 in London today there is plenty of scope to riot outside a bank or two just now) but the experience has changed my life view enormously, and principally for the better, I think.

Looking forward to reading more, Snick.