Sunday, May 30, 2010


Originally uploaded by .never have i ever.

Last night I was watching the film "A Beautiful Mind." I'm sure you are all familiar with the story. Russell Crowe plays an gifted mathematician who suffers from schizophrenia. The film illustrates how a person's life can be so tragically altered by this mental illness. It also shows how equally difficult it is to be the spouse of the afflicted as well.

The film does a great job in the telling of the story, allowing us at first to only see what Russell's character can see. Only later in the film are we given the opportunity to step back, and to see what the world, and people, around this character do not see. It also walks us through a marriage, one with a loving partnership, that becomes tattered and torn by this illness.

The story had me in it's grip from the beginning. Although we are all aware of such debilitating illnesses, and their symptomatology, none of us go about life expecting them to land on our front door. The person we love may begin acting in a new way that can easily be attributed to fatigue, depression, apathy, or selfishness. They may begin to verbalize complaints that don't merit any significant concern, and our frustration level with the person might be building, not knowing, of course, that 'something evil this way comes.'

When Michael began suffering from his brain tumor we had no clue. There were no significant symptoms. He was not passing out, or having any seizures where he fell to the ground, or losing control of his nervous system. It began with him not waking up easily in the morning. It was the beginning of the summer, and who wants to get out of bed to go to work on such nice days. He began to complain about headaches when I would encourage him to get out of bed and start preparing for work. He would respond with complaints of having no energy, or feeling sickly, when I said that he can't stay in bed all day. It would be months before these mounting symptoms would lead the doctors to conclude that he had a brain tumor. It almost became a daily joke, that kind that intensified in time, that he might have something serious, like a brain tumor. He wasn't experiencing anything too strong, or painful, so our humor is what got us through these frustrating mornings.

I often thought that life was too cruel to Michael in choosing this particular affliction. He was a very bright individual, he had an MBA, and worked as a budget analyst. The majority of his self-esteem was tied up with his intellect. It would be another year and a half until the serious symptoms would take control of his mind and body. When I had to start reminding him of how to do things, or gently break it to him that he wasn't remembering what had just happened less than an hour prior, is when he began to feel the devastating fall out. I remember sitting in bed after a evening of his having to struggle to feed himself, that he started talking about not wanting to live like this. He shared with me that death didn't scare him as much as losing his mind did. He prided himself on all things cerebral. As a way to keep his brain stimulated he spent hours doing crossword puzzles and Sudoku.

As his spouse, it broke my heart. I knew that I had to be there every step of the way, and in time, every minute of the day. I could see the humiliation in his eyes. I would explain everything that we needed to accomplish, and always told him we could do it together. All of this of course was meant to soften the daily blow to his ego, but deep down I knew it was of little success. In the end he was so confused at times, sometimes child like, other times clearly himself. It was the most cruel way I could imagine for Michael to have to be taken from this life.

What was most difficult to watch in "A Beautiful Mind," was how the husband and wife worked side by side so that he could continue to feel, and be, successful. Toward the end of the film they are both quite old, yet they are still quite the same. At the end you have this couple standing side by side, and one of them reaches out to the other in a very familiar, and soothing way. They then walk away, hand in hand, to continue their journey together.

This is when I felt a familiar stab in the heart. I find any reference to growing old together to be cruel, and I feel it quite personal. I hear it on so many television shows, in so many films, and in so many books. It is what we expect, and it is the sign of a life well lived, and a life well loved. I feel so denied this natural process. This is where I get stuck the most. I get angry. I feel hatred. I am filled with jealousy. It is also something I hear all around me. It's one of those phrases you don't really give much thought to when you are in a loving relationship. It is something you take for granted. Of course "we will probably grow old together." And everyone around is doing just that. They don't have to be old by anybodies standards. The process of Michael and I growing old together stopped on September 13, 2009. For everyone else I see, they have had the luxury of growing 8 months older together already. It doesn't matter how many years they had before September 13, 2009. I count every one's good fortune from that day forward.

I feel like my life was derailed. To be honest, it was derailed two years prior to September 13, 2009. We were told that Michael would die from this. We were told what the odds were for one year survival, for two year's survival, and so forth. We knew that for Michael to reach two years survival, he would have to be in the 5% that found themselves to be so fortunate. So I knew. Michael knew. We knew that we didn't have the time to grow old together. Our plans for the future fell to the floor on October 17th 2007. When they fell, there was a loud sounding crash. Splinters from it's prior solid pieces were quickly fragmented, and several pierce my heart.

Sometime I tell myself, "what did you expect?" "You choose to keep growing in your love in spite of knowing that it would quickly end." It's my own damn fault for loving him so much, that it hurts so much today. Why should I be angry at anyone else? Why should I begrudge anyone the expectation of a future, when it was what I expected as well. How do we put that expectation aside? Being told my partner at the time was going to die didn't derail my love for him. Exchanging the vow of matrimony one year later didn't take away my expectations for a future. I knew we didn't have a far off future, but I did expect some kind of a future, and certainly one that was longer than only eleven months after marriage.

I pray each night that I won't grow to become a bitter old man. Yet in some ways that is what I have become. I feel old beyond my years. When we think about the day we might lose our spouse, we most certainly picture ourselves as quite old. So in this way, I have arrived. And, bitter, yes I am. I can either pretend that I am not bitter, or just feel comfortable with my bitterness. It has found a solid place in my heart, and outside of a bitter-ectomy, I will have to wait until it works itself out.


  1. Dan, as you can understand this post has me in tears. And lots of them. Your description of the look in Michael's eyes when he knew he wasn't remembering or figuring things out . . . .

    Elias would try and joke with me that now I had three kids to look after - but I know how much he hated it. Really hated it. As did I. As did Michael. As did you I'm sure.


  2. How well I know this bitterness. As I have tried to regain my life in the wake of Don's illness and death, it is the anger, and a feeling that we were ripped off... cheated out of the years we had worked so hard to earn. Our goal had been to retire early so that we could spend those extra years *together* as it was the thing we both loved so much. Don had always had long work hours - the company just wanted more and more out of him over time - so we consoled ourselves with the knowledge that we would soon be together all day long, every day. Soon we would be in a position to chuck it all and run away to hike and canoe and garden happily ever after here in Nova Scotia. Don was diagnosed with cancer just 6 months before the date we had chosen for him to retire.
    As in Michael's case, Don's illness was definitely "there" long before we realized. It started with being so tired that he could barely get up in the morning - and being unable to lie on his left side - the side that was facing me in bed - because it felt oddly uncomfortable. Several months before he was diagnosed, I remember looking at Don from the side while he was sleeping and thinking that he really looked like his dad... but his dad when he was close eighty and dying from kidney cancer. It was such a chilling premonition and I can still remember it to this day.
    Anyhow, yes, for Don, a person who had such a quick mind and able body - he moved like a man half his age and could work rings around anyone else at his workplace... it was so evil to have him become sick and increasingly incapacitated. His cancer was severely metastasized, so it spread all over early in the disease. We discovered why his hips had begun to hurt when we went hiking the previous season - not from arthritis, but from the cancer eating away the hip joints. All of those things and more - still make me furious inside. Furious that this happened to him - such a kind and gentle person who wouldn't harm the tiniest creature. Scientists occasionally asked me to collect insects for their research work, but Don was so uncomfortable with that idea, that I had to refuse those requests. That's how kind he was - he didn't even want me to put a spider into a vial in the name of science.
    How to go on when there is this rage and bitterness toward a disease? How do I not feel hurt and angry when I look around at all of the couples who are still together? How do I go on, knowing that there is no one to take care of me if anything happens - I get sick or injured - as I am so alone now? This is all intensely painful stuff for us to deal with. It's not the future we put in all of those years working overtime, or in my case, taking on tons of contract work, in order to get to.
    I'm not sure that we ever get over some of the anger and bitterness. Of all the feelings I struggle with, that and the sadness over what Don suffered through, are the hardest for me to get past. However, at twenty months, I'm not quite so bitter as I was at eight. I guess this is one of those situations where we slowly grow over the bitterness. I equate it a bit to how a tree gradually grows over a scar, or even an embedded object like a nail or a stone. Some day, when this tree grows old and falls, someone will be surprised to find a spike in its heartwood and wonder how on earth it ever got there.

  3. it is a somber chorus that i have my own voice and version to add. i love this movie and watched it with my Dragon. it was one couple's story of how love can overcome such terrible things.

    i know the heartache you feel and the dreams that died. growing old alone is not for the faint of heart. i hope you can draw on the love you have for Michael. keeping that fire burning softly can keep you warm.

    my Dragon and i always wanted to go out like Bicentennial Man. holding hands laying side-by-side. very old. ready for the next adventure together. i can only hope there is a nice bench with a view of an infinite ocean for him to look at while he sits and waits for me. since time means nothing in Heaven, whether i live another 30 years or simply 30 more minutes, it will not be long for him.

    i wish for you peace, Dan.

  4. matt told me he would live to 102, and when I said I thought I'd check out at 92, maybe 93, he said "but what will I do without you?" I asked him what he could offer me - maybe I'd stick around. He said he was going to sail around the world, and he would like me to come. I agreed, if he would also agree to paint the deck of the ship a good shade of pink. He is supposed to be here, still 63 years off from his projected date of departure. I am the one who has to live here without him. We were ONE DAY - one day! from his son turning 18, from the celebration of our time together as just us, three months from our projected date to move south and be our Team, together. He had waited 18 years to celebrate this time for himself, and we, together, had worked so hard to be where we were. He wanted to hike the AT, take off into the salmon river watershed, disappearing for 6 months, hiking his way out to meet me on the other side. He wanted to build our house, with its ever evolving designs. We were so incredibly Right, as us. Robbed and cheated, bitter and envious - I know these things too. Ready to smack those people I see not enjoying or honoring what they have, too broken and jealous to watch the people who do enjoy and honor. Not proud of it. but it is dishonest to pretend I am not all these things, along with so so so grateful for all that we had, all that we created and celebrated together before he drowned. My best hope is that this IS old age for me, that 39 is my 95, or my 101.

    Spike in the heartwood.

  5. Bitterness goes hand in hand with grief and loss. It's not fair. And it's ok to feel damn angry and bitter. I find if I stay there too long, it makes the now too dark, which is ok for me but not ok for my sons. So I try to balance it, let myself go there when it won't affect them and really try to live in the now. I must confess I'm rarely good at it, but I try every day to get better at it. I think I would be a very different widow if I wasn't also a Mom of two young boys. Though I'm still dealing with a short more thing to work on.

  6. I like what Suddenwidow said. Bitterness and anger are part of grief, and we can't deny that... but I can't stay there too long, so I try to find small things in the moment to enjoy, to help me remember that there is still some good in life. But I couldn't even begin to count the times that I've said, "This isn't FAIR. It wasn't supposed to be like this."

  7. As much as I miss him, and rather resent that there is part of my family-of-three still alive out there but not with me, I think it is likely a small blessing that my step-son moved back to his mother's about a month after matt drowned. He is all of 18, and deals with things by pretending nothing happened. I am too painful for him, I think; at his mother's, there are no external reminders that life has changed. There is no one here with me but the dog (and thank goodness for him) - and he doesn't mind my sobbing. Silent fuming rage, however, makes him leave the room.

  8. Dan, I meant to mention something earlier. I don't think you're in any danger of becoming "a bitter old man." We will all get beyond this some day. If anything, we'll probably end up at least a couple of notches higher than average on the compassion and empathy scale.

  9. Thanks to everyone for weighing in on this perhaps less attractive side of grief. At least I am trying to keep it in check. And yes, I do trust that it will change, or lessen with time.