Boys Meet Doctor, part one

We had our bi-annual visit with the neurologist last week. This is our third neurologist. It makes us sound fickle but it isn't like that. A physician friend counseled me when we were going through the diagnosis stage of the game. She said, "you need to keep going to a different physician until you find one that you believe." She was right. I didn't believe her at first though.

The first physician diagnosed Pete quickly. Announcing abruptly, "I'm sorry to say that you have multiple sclerosis. I began to cry immediately and he looked at me a bit confused as if he was thinking, "Hmm, I didn't expect that response." We stuck with him for almost half a year.

The next doctor had great bedside manner. He was so loving and affirming of us both. And yet we would leave his office feeling as though he didn't realize that Pete was sick. And after two years with him, we realized that he was a gifted neurologist who saw a range of patients. And while Pete may have been doing better than an ALS patient he saw earlier in the day, he wasn't doing that well.

Doctor #3 is an MS specialist. Admitting that it took us three years to go to an MS center or find the best doctor available to us is a bit embarrassing. I hear people all the time go right to the best doctor they can find, "they're not foolin' around." We weren't foolin' around either. We learned a lot of things those first three years. We lived with changes in Pete's body and tried to find words to explain it. We vacillated between believing his diagnosis and not believing his diagnosis. We prayed and cried and yelled a lot those three years.

It had taken 30 years for Pete to be diagnosed with MS. In the scheme of things, what's three years to find a doctor you believe?

Here's how I knew she was the one for us. At the end of our first visit, she asked if we had any additional questions. In fact, I did. I had a list of them in my journal. I began going through my list:

What if this is really a back problem? After all, he primarily has symptoms in his right leg.

What if this could be the effect of the Asiatic flu that he had when he was a child?

Am I wrong to understand that some people have non-specific white matter in their brain and on their spinal cord and yet they do not have MS?

And finally, I have a friend who would like me to ask if it couldn't be Lymes... and then she cut me off.

"Let me begin by saying, it is most definitely not Lyme's disease." And then her answer got a bit louder and more rapid ending with, "while you see primary symptoms in his leg, I see them in his hands and in his posture and with his left side as well as right side...." And then I think she looked up at me and I must've had a stunned look on my face. She took a deep breath and lowered his voice and slowly said once again, "You have multiple sclerosis."

And then she kept looking at me. And then I finally said, through a few tears, "Thank you."

I learned that day a very important lesson about myself. I learned that each of us have our areas of expertise. And when I'm in the room with Pete and a physician, I want my expertise to be as his partner. And I want the doctor to take control of everything else. I need a physician with a strong, firm grasp of the situation at hand. It makes me feel safe.

The boys got to meet her last week. And I watched as she did the same to them. She answered all their questions with rapid fire answers. She poked fun at them, and they poked fun back. She encouraged their questions and when she helped them ask the smartest question (as if she knew they were smarter than they were first letting on), she would say, "now that's a good question, let's talk about it."

Thank God for doctors with strong, firm grasp of the situation.

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.

Steps

Lao Tzu said, "A journey of a thousand miles begins with one single step."

People with chronic illnesses think about every single step.

Generally speaking, handicap accessible doesn't mean handicap convenient. I often think that if my husband was unable to walk, he'd have a better time getting into places than his current state of partial-disability.

Our favorite conundrum is when his choice is to either climb 5-6 steps OR walk a 50 foot ramp. Pete can walk but he gets tired easily. He uses a rollator with a seat. He can walk about 25 feet and then he takes a quick 60 second rest so that he can keep going. Given the option of steps or a ramp, he often opts for the steps.

I'm afraid of steps. Our house is littered with them. The kitchen is two steps lower than the living room. The bedroom is on the second floor. But in reality, he has not fallen down the steps and there was only one time in five years that getting up the steps was too much to do. (It was after a long day of travel, two flight with only a hot dog for sustenance.)

Bu I'm still afraid of steps.

We play this game as a family... it's a mixture of pictionary and telephone. We call it the paper game. We write a phrase and then the person next to us tries to draw the phrase, then the next interprets the phrase into words, then the next draws the interpretation. You get the idea.

One time when we were playing this game, I interpreted someone's drawing as "Dad fell down the steps." After I said it, silence fell over the room and I realized that the paper game had just acted like a Rorschach test and my subconscious was dancing around for everyone else to see.

Yesterday we took a step of sorts. We braved visiting my brother's house. (They usually come to our house.) There are two ways to get into his house: 6 steps into the back door or 50 feet into the front door where there is only one step. They have three girls and so there are toys that may need to be moved out of the way. And their bathroom is on the second floor.

This seems so mundane a topic... but it's my life. I have to think about steps in a world filled with obstacles. But yesterday was a success because we took a step. We had a great dinner with lots of giggling from my nieces and we played games as a family... not the paper game this time. My subconscious was happy to not have been on display.

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.