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.

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.