I Know Me

Wordy. Verbose. My, you have lots of language. These were often the types of comments my high school teachers, and then my college professors, noted on the papers I wrote as a young woman. All true. After enough chiding, I’ve gotten to be a decent editor. I know that less is more. I’m good at one-line zingers and often can find just one word that says it all.

But not so much in regard to explaining where I’m at about Michael. Then again, I suspect I am pretty good at explaining how I feel. I just can’t make people hear me. Not really. If I was perfectly clear, then perhaps I wouldn’t constantly be reminded by people that I don’t know what can happen in the future. That I should “never say never.” That I should be feeling ready to “get back out there.” I’m so done with these old saws.

Given the expectations of our culture and relative to his own genetics, Michael shouldn’t be dead. But he is. The long life he and I expected isn’t ever going to happen. There are no magic wands to wave. And I understand it. I also understand that I’m not going to have another partner. I don’t want one. I don’t care how long I live. That part of my life is over. I want it to be over. You don’t need a partner in order to lead a satisfying life. I believe that. I also know that I believe it is impossible to replicate what I already had. That anything less than that would be a waste of my time for me. I’d rather read or travel or think. Volunteer. Garden. Enjoy my other hobbies. I’m good at entertaining myself. I don’t need a dinner companion who is male. I have friends. I have family. What’s the problem, people?

Maybe I can figure out how to be more clear. I’ve spent a lot of time on internal exploration. I know myself very well. And because I’ve spent a lifetime writing, I can go back and find the roots of my thought processes. I recently read a journal entry that I wrote on October 20th, 1971. I’d known Michael for a little over 2 months. We were both involved in romantic relationships. Mine was killing me but I kept hoping I could turn it around. Michael’s was less serious, but present, nonetheless. We consoled each other. We empathized with each other. We spent a lot of time together talking and building our friendship. I don’t recall specifically, but I think might have been taking a class in British poetry at the time, taught by the brilliant Edward Brandabur. I interject this because in my verbose, wordy style that leaked into my journal writing, I found a reference to William Wordsworth’s Lines Composed a Few Miles above Tintern Abbey, written in 1798. I’ve always remembered the lines critical to me. “And I have felt a presence that disturbs me with the joy of elevated thoughts; a sense sublime of something far more deeply interfused, whose dwelling is the light of setting suns, and the round ocean and the living air and the blue sky…” Wordsworth was taking about nature. I was talking about Michael.

Here are the dramatic journal excerpts from a 20 year old kid who had enough tough life experiences to feel old:

“The euphoria I have so long ached for and almost gave up on is here, upon me. I’ve seen a plain face – at first sight, the same as anyone’s on the street. And a body like others I’ve known. A glance of acknowledgement, an awareness of an existence, nothing more. A face and a body which now are beautiful, exceptional and so meaningful,  that my once casual glance now sees a soul, fully written in eyes and expression, in a slouch, a hand petting a dog. A soul so close to mine, it feels my internal knowledge, lingering in my direction but an instant to bask momentarily in an emotional freedom. We are not lovers except in our minds. I don’t know if we’ll ever share ourselves in that lovely physical passion, but how irrelevant, suddenly. For there, I know him too, his gentleness and tender heart reaching innocently, despite his anxious perceptions, to that pure, clear place in love. His pain, the onslaughts on him, hurts me as equally as it does him, and within myself, I arm for battle, for fighting those foolish, blind people who injure him. I love you, Michael.”

Pretty saccharine. Yeah. We both felt that way almost instantly. An incredible depth of understanding and emotional intimacy. By January of 1972, I had taken the leap and confessed that I was in love with him, just as I was leaving the country for a few months. By April, after my return, we were living together. We were never separated after that. Like most couples, we had some issues to iron out. Those took a few years. We were so young. But we never moved apart. And that cosmic, instantaneous friendship was the bedrock of our life. We retreated to it during the hardest times. We rode it, clinging to it over life’s waves. I found another journal entry from 2007 the other day. I’m using all these snippets as I work on writing my book about dealing with his orphan cancer, and what it did to our lives. I didn’t know these journals would all become my primary sources. I was just writing, unloading my thoughts and feelings. My catharsis. Anyway, in that one, I was fretting about my son and some of his problems. But at the end of that note, I’d written that absent worrying about my kid, I was a very happy woman. I had big love that endured. Big love that kept growing.

I stayed that happy woman, all the way up until Michael’s diagnosis. Then our world was turned on its head. We spent the next five years coping with that shocking reality.

I know that the reason I feel so certain about not wanting to be in another relationship is because of those five years we spent dealing with his unusual cancer. Unless you’ve actually lived through the experience of your person being given a deadly diagnosis, and clawing your way through it, you can’t really understand what would make someone like me be so definitive about whatever time is left ahead of me. Once the initial shock and terror of having to absorb all the words tossed at you by the doctor wear off, things can go in different directions. Some people find that their relationships are too fragile to withstand the daily pressure of treatments and uncertainties, of relapses and hopeful moments. In our case, that go-to friendship and the strength of it retained resilience and power. I wouldn’t have thought it possible that we could become more of a team but we did. I found it terrifying. I knew that one day, Michael would be gone. I would lose what had been that constant support that I’d leaned on my entire adult life. But that knowledge drove us closer. As threatened as we always felt, we pulled more tightly together. Michael used to say that if we got any closer we’d be coming out each other’s backs. We chose to pare down our world and spend as much time as possible with each other. I went to all of Michael’s scans, infusions and radiation treatments. I wanted to squeeze every possible second we could get out of life. My no regret policy. A lot of what happened was hard to watch.

Trying to live the best possible version of your life, one day at a time, is so much harder than you can imagine. The terror of waiting for scan results and blood tests. In Michael’s case, he had visible tumor tissue. Trying to keep a steady hand while making a photographic record of each growth with a tape measure for accuracy. Watching helplessly on the bad days when the radiation has burned the skin so badly that it’s discolored, peeling and painful. Having to shove Boosts and Ensures at someone who isn’t hungry and watching it be forced down in a desperate effort to keep being alive. Knowing that you don’t think you could stand any of it yourself,  while you wheedle, encourage and support the person you love most. Feeling like you might explode any second. Wanting release but being unable to let go for one second. Having your child look you in the face and say, “Mom, you can’t cure this cancer.”

Writing and calling oncologists all over the country, pushing for ideas, trying to get into clinical trials, stretching your emotional and intellectual boundaries beyond your wildest imagination. The journey changes you forever. The arrow on my internal gauge was on empty for a long time. And finally, the inexorable endpoint came. Michael died. And I was still alive.

A lot of people say you have no idea what may happen to you. No one knows that better than me. I’ve received the dreadful life-changing phone calls regarding my husband and my parents. I have children and grandchildren, a sister, cousins, nieces and a nephew and all their kids. I’m wholly aware of the fearful things that can show up out of nowhere. And the world is out there with its daily tragedies. And there’s me. I’ve just navigated my first significant surgery and I did ok. But one day, unless i inconveniently fall asleep and never wake up, or I’m felled by one of the biological killers like a massive stroke or coronary, I’ll have to face my own death. I’ve pondered that a lot. Will I be able to maintain the level of executive function I had for Michael and my parents when it comes down to me? Who knows? What I do know is that taking on another partner and possibly having to do all that caregiving again is not on my to-do list. I spent myself on the love of my life. I was glad to do it. I am regret-free. But I never want to do it again. And I am absolutely certain that being able to share a meal or hold a hand is no enticement to me. I’m quite content with my good memories of my very good life. What I built with Michael remains a very much alive part of me and it’s still helping me live my life in the best way I can. I watched my husband fight for every day. Each day he said, “I woke up this morning so it’s a good day.” He maintained that view until his last days. I want to feel that way and to do my best to squeeze the beauty and the gratitude for each morning that he did. I don’t want to lie on the couch with the vapors and be miserable. I feel like I would dishonor Michael if I did that.

Michael and I discussed his death frequently. He asked me what I would do when he was gone. I told him I had no clue. Sometimes he thought we should check out of this life together. Mostly he would say that I needed to stick around and take care of our family. I thought that was nervy. More caregiving for me. He did tell me that he wanted me to be happy and essentially gave me his blessing for any future relationship I might choose. But in truth, we both knew I was done. He will forever hold the parts of my heart that were in his care for so many years.

So please, readers, especially those of you who know me personally and who see me: believe what I say. I’m only lonely for Michael. The rest of my time is full up. I’m not pitiful. I wish I’d never wound up as an early widow.  Certainly countless others have it worse than me. I consider myself lucky. Too many people will never know the magic that was big love in my life. And I feel for them. I’m doing fine. Please recognize that everyone doesn’t need a partner to have a good life. And stop telling me what I don’t know about myself. If a miracle happens and I change my mind, you can mock me then. Right now I’m all good.