voyeurism

I renewed my commitment to writing and that worked for three days. But I took the last four off. Why do I do that?

I'll tell you why... I told my family that I had starting writing again. And they're the reason that I'm afraid to write. Let me say more about that.

The reason that I wanted to write down my thoughts about grief was because I couldn't find a book that resonated with me. Don't get me wrong; there are shelves filled with books on grief. There are memoirs from caregivers that could keep me busy for a year. The book that I'm looking for would be: written by someone who is caring for his or her spouse and... whose spouse does not have Alzheimer's disease and... whose spouse is not fighting cancer.

Why the narrow search? The journey of someone caring for his or her parents is different than someone caring for a spouse. While Alzheimer's disease is horrible i is really different than multiple sclerosis. And people fighting cancer... well, that's just it - they're "fighting" cancer. I have yet to hear a neurologist say, "we're gonna beat this thing, Pete!" It's not that they don't want to find a cure for MS. Believe me, they do! It's that there isn't a cure for MS. And Pete's body is actually fighting itself so there is no punching allowed. So much of the caring for a person with MS is about accepting and loving and embracing and shrugging and sleeping and hoping that tomorrow will be better.

The image of fighting isn't one I'm looking for. I have spent hours, days, months and maybe even the whole first two years of his diagnosis questioning and wondering about a symptom of MS that has no rhyme or reason... it's just a symptom of MS. Say Hello to it. Cry a little. Have another cup of coffee.

All that to say... a memoir written by someone caring for a parent or someone fighting cancer or someone suffering through Alzheimer's disease does not share my journey. And I longed desperately for a book that I could point to and say, "Look, this person knows what I'm going through." His wife is sick. Or she gets angry. He's sad. She's depressed. He feels hopeless and alone sometimes. She faces mini-deaths every day.

I know why this book isn't written. And it is the very reason that keeps me from writing.

My spouse will read this book. He's not dying like a parent might be. My family and friends will read this book and while they know that I'm hurting do I really want them to see this much of me?

The problem with a book by a caregiver to her spouse who suffers from multiple sclerosis is that it's an incredibly vulnerable endeavor. And while I have desperately wanted to see into other people's lives so that I don't feel so vulnerable, I'm not sure that I'm comfortable with others seeing my vulnerability.

Starting Over

In yoga I learned that I can start over with every new breath. So, here I go - breathing in and breathing out.

Did you try it too?

I practice breathing... and starting over multiple times each day. It works most of the time on an emotional or intellectual level but in a reality, when I open my eyes or turn back to my life, things look the same.

My name is Beth and my husband has a chronic illness. He was diagnosed with MS almost five years ago. And here's the place where I like to tell folks about all the great stuff in our life because there is so many great things in our life. We have a fabulous family. Two grown boys, each maturing and interacting with the world in a way that any parent would be proud. We have a generous, loving daughter in law. Our lives are unimaginable without her. And this year we became grandparents to truly the most beautiful baby girl.

We live in a huge townhomn; I love to cook and we eat well. We belong to a farm and can enjoy local produce, appreciating the earth. To say we enjoy wine would be an understatement.

I have meaningful work - more on that later. We have amazing friends, that rare combination of people who know us and still enjoy the show.

So, my husband having MS is only a portion of my life and yet anyone dealing with a chronic illness would say that it interacts with every portion of our lives.

Our family worries and cares and watches more closely.
Assistive devices litter our home.
Our cuisine, or at least the amount of wine we drink is altered.
I must balance work more thoughtfully.
When we go out with friends, the where and when is determined by illness.

So amidst the vast amount of life running and giggling through our days, there are daily deaths that we face. And my grief button is pushed over and over again. I breathe in and breathe out, trying to start over again. But when I open my eyes, things look the same. Death is still in front of me.

It's not the "end all" death; it's a mini-death. Folks who live with chronic illness face mini-deaths every day. If you want to learn how to start over, ask them. They're experts.