Doctors

Most people go to the doctor once a year. Not true for those of us dealing with chronic illness. Doctors are practically part of our family. Some of our doctors know our weekly activities and they remember our kid's names.

Take for example, our chiropractors... Dr. Mike and Dr. Heidi.

I've gone to a chiropractor my whole life. This was new for Pete. Around the 2nd year of diagnosis, he thought he'd try it. Because of his difficulty walking, he often twists and strains his back, moving his hips out of alignment. After his first adjustment, he was able to balance better and... he slept through the night. He could not remember sleeping through the night. Sleep for the chronically ill is like currency. He spends so much more energy doing daily activities than the rest of us. (His nervous system does work properly so even for his brain to tell his lg to move, it requires more energy.) Sleep is his friend.

He was sold.

For him, a weekly adjustment helps his overall quality of life. But Dr. Mike and Dr. Heidi like to see me every other week.

Without question, I hold most of my stress in my back and as a primary caregiver, there is some stress in my life. But you might be asking, "every other week? You really need to go to the chiropractor every other week?" Between you and me, I'm not so sure about that either. But here is what I am sure of... it's one time in my week where someone else cares for me.

They look me in the eye and ask me how I'm doing. They touch me, lovingly as a physician and companion on life's journey. They know a portion of my life better than anyone else. And they hold that knowledge in trust.

One week, Pete was having a particularly bad go of walking. And he stumbled as he entered the waiting room. Dr. Mike took over caregiving, offered assistance and got him started with treatment. When he came out, he motioned for me to come back and he led me into their coffee room. He shut the door and looked me in the eyes and asked (fully expecting an honest answer), "How are you?"

I started to say that this type of thing happens. Pete get tired and this is a bad week. And he interrupted me and said, "Yes, but how are you with all of this?" He told me about his dad who also suffers with a chronic illness and he wanted me to know that he understood the frustrations of being a caregiver. He understood the phrase, "I wish that he would just..."

I don't know about other caregivers but I always fight wondering whether if we just did this one thing differently, life would be easier. And since I can't control my spouse, he often doesn't do things the way that I would do them. And it's easy for me to think that if I were him, I would do things differently and things would be better because of it.

I know that is not necessarily true but it feel true. (And we'll never know because who am I kidding... he's never going to do it my way.)

Dr. Mike asked if I was taking care of myself. I told him that I exercise, I go to yoga, I read, I write, I cook, I have friends and truth be told - I come to the chiropractor. And he smiled and said, "Well, let's get at it then."

With a couple tears in my eyes, he led me to my own room where he massaged some of the knots out of my back and straightened me out again, lovingly offering me his hands to lift me back into my life as a caregiver.

I said, "thanks." He said, "you're welcome." And right before I opened the door, he told me about a new wine that he found. We always talk wine - after all, he's practically family.

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.