Grief and Disentangling

My wife Sharon passed away July 31st, and I would like to describe some of the thought process I’ve been going through for the last month. My wife’s death wasn’t sudden. She was diagnosed with ALS two years ago, and she’s been through a progressive loss of muscle control over various parts of her body. First she had difficulty walking, then she started to slur her speech and she gradually lost the ability to speak altogether. She had trouble swallowing and ended up getting a feeding tube through the stomach. Soon she needed a wheelchair, and then she couldn’t hold her head up. And toward the end she lost the ability to use her arms and hands, and eventually the ability to breathe.

But this article isn’t about Sharon — at least not in that way. It’s about the way that we tend to tangle our lives up with the lives of others, until we find that we sometimes have a hard time figuring out what our lives are like as individuals.

Sharon

Sharon and I had been married for seventeen years when she began to show symptoms of ALS. We started our marriage as individuals, but as two people live together and love each other you find that sometimes it’s hard to tell where one person stops and the other one starts. You make plans based on a combined set of goals. Sometimes you remember whose goals are whose but often you deal with an amalgamation, a blending of goals and desires that develops organically through the process of living together. You unconsciously divide tasks between the two of you based on ability, interest and desire: one person mows the lawn, one person vacuums the house, one person makes decisions about those seemingly trivial home decorations that turn a house into a home. It gets to the point where you don’t think about it. Things just happen, whether out of habit or repetition or unspoken mutual agreement.

As Sharon’s health declined, more and more responsibilities shifted to me, until I was doing all of the day-to-day stuff plus taking care of her. The time commitment caused me to cut myself off from many of my outside activities. I cut back on working, I resigned my positions in various community and non-profit organizations. I focused all of my time on caring for Sharon and in trying to keep ahead of her progressive decline by looking for tools and techniques to make her life better and easier.

Before the diagnosis, my life was already pretty much intertwined with Sharon’s. But after the diagnosis, Sharon’s declining health forced me to dedicate virtually every waking hour to making Sharon’s last few years on earth more enjoyable and loving. I think I succeeded, although even now I can look back and see things I could have done better — I guess that will always be the case.

So why am I writing about this on a business blog? For a couple of reasons. First, because in trying to deal with the grief of my wife’s death, I’ve learned things that I think are applicable to other situations — I’ll get to some of those things in a moment. And second, because I now recognize that there’s a lot more to grief than just getting control of your emotions, and I think my readers could benefit from some of my thoughts along those lines.

Grief

In reading and thinking about grief, I’ve found that:

1. Everyone grieves differently because the relationship between the griever and the lost loved one varies greatly from situation to situation. Yet in spite of this, you’ll undoubtedly have 100 people tell you, “I know how you feel,” even though they don’t, and you know that they don’t.

2. Grief happens at different levels simultaneously. There’s the emotional grief of never seeing a loved one again — the loss of future love and enjoyment. There’s the grief of guilt — wishing that you could have done things differently. There’s life disruption grief — all of a sudden your world is turned upside down and you have to do things differently. And there’s the grief of lost goals and objectives — your perspective has suddenly changed and now you have to reevaluate your life goals to figure out what you want to do with the rest of your life. There may even be PTSD — post-traumatic stress disorder — due to the intense stress of the circumstances just prior to the death of the loved one.

3. We commonly use the word “grief” for situations relating to a death, but the term applies equally well to other non-death situations that are traumatic in nature and which result from a sudden break from one reality to another. We can grieve, for example, after a divorce (essentially the death of a marriage) or even after a job loss (the death of our relationship with our employer). All of the same symptoms of grief may apply in these situations, and indeed in many cases the grief may be just as severe as it is for the loss of a loved one.

Entanglement

In thinking about these different aspects of grief, I realized that in many ways grief is about sudden, forced disentangling. We’ve spent years wrapping our lives around others, whether it’s life as a married couple or life as a member of a work team. The longer we live or work in one place, the more our lives get connected to others. That’s a good thing — not something to be avoided. We’re a social species, and connections make us happy and give us joy on a day-to-day basis.

Often our relationships change over time, but usually the change is slow and easy to accept. We get promoted and our job relationships change. We move from one location to another and our neighbors change. Some friendships fade, other friendships blossom. Change is constant, but usually it’s not abrupt. We still stay in touch with our old neighbors. We maintain loose connections with old friends on Facebook. All the change is gradual.

But then, once in a while, the change is startlingly abrupt. We’re laid off. Our company goes bankrupt. Our child dies. Our spouse dies.

This is harder to accept. Too much is changing all at once. The mind boggles at all of the disconnections and sudden changes in our lives. All of our mindless day-to-day activities which we have performed on autopilot now have to be revisited and reassessed. Our world turns upside down. We’re strangled by our entanglements. All of a sudden we’re grieving.

Grieving

This is where I am right now. It’s a weird place to be. I’m perfectly functional and lucid — most of the time. I can do mundane things like buying groceries and doing laundry. I can even write articles like this one.

But I get flashes of emotion, sudden floods of thoughts or images or feelings that take me back to the days before Sharon’s death. Some of them are “woulda, coulda, shoulda” thoughts: things that I wish I could have done differently, words I wish I’d said or that I wish I hadn’t said. I guess I would classify these as guilt, maybe deserved and maybe undeserved. Guilt is a funny thing — you feel it whether or not you should, because you tend to measure yourself in hindsight against perfection. And not just any perfection, but the perfection that comes from knowing all you know now, even though you didn’t have that knowledge at the time you made those past decisions. You think, “If only I had seen that coming and done this other thing instead.” But you can’t keep beating yourself up over this. What’s past is past, and the only thing you can do is to file your knowledge away in case the situation ever arises in the future.

Other flashes of emotion are empathy pains. I keep imagining what it must have been like to be Sharon, slowly losing all control over her body, as if she were being sealed inside a tomb while still awake, her brain still functioning perfectly but her body not responding to her brain’s commands. I keep thinking of the actual moment of Sharon’s death, when she died in my arms. But somehow I’ve got to train myself to stop thinking this way. It’s like being in a car wreck and remembering the events of the wreck itself over and over. It does you no good; it’s just torture. I’ve got to instead focus on remembering the good times that Sharon and I had together, and let those happy memories drive out the thoughts of Sharon in distress.

Disentangling

Perhaps the hardest thing to do in grieving, whether you’ve lost a loved one or a job, is to rebuild your sense of self. It’s a disentangling process, but it’s focused on the future — not the past. You don’t have to disentangle the past. The things you did together — the experiences and pleasurable moments — will always be a part of you, and you don’t have to forget them. But now it’s time to separate out your goals and dreams from the goals and dreams you shared with your loved one or your employer. Maybe those goals you held together will take on less importance now that it’s just you again, or maybe not. The key is to recognize what you really want for yourself. Not things you think you want because other people told you they’re important, but the things you truly want and would want even if no one else cared one way or the other.

The disentangling process can be a shock. In my case I’ve been focused on Sharon’s needs for so long that I’m having trouble figuring out what I want to do now. Sometimes it’s difficult to hear your inner voice when all you’ve been hearing is the voices of others. And you’ll probably have no shortage of people telling you what you ought to do now. Listen to them if you wish, but listen to your heart more. Do what makes you happy — not what other people tell you to do.

Conclusion?

There is no end to this process so there’s no conclusion I can draw. I’m not done with my grief, but I hope and expect that I’ll get better and better at dealing with it. And maybe I’ll also get better and better at handling those sudden flashes of emotion. I hope I’ll eventually recognize them as gentle reminders of a wonderful woman whose life I shared for twenty years, a woman whose love continues on inside of me and inside all the people who knew her.

Sharon, I love you, always and forever. And maybe someday I can put all of this into a better perspective. But for now, I’m still disentangling.