Closer to Fine, an ode to Doctors and the Indigo Girls

Pete has six doctors on his team and yesterday we found out we need to add another... And I will pause this very moment to put this on my todo list or I may just forget.... OK, I'm back.

Our team consists of a primary who is an internist, two cardiologists, a therapist, a chiropractor and neurologist who keeps track of the team activity. And what I love most about this team. They know that we absolutely not ok. We are not fine nor are we closer to fine. Pete has a chronic, progressive, degenerative illness. Our team knows this better than I do. And they somehow know which part to talk about or to treat when. They have priorities that I don't understand but they also listen to us, mostly me, talk about our priorities. 

OnBeing with Krista Tippett has a wonderful interview with the Indigo Girls...
AMY RAY AND EMILY SALIERS 
Music and Finding God
in Church and Smoky Bars
"They see music as a continuum of human existence, intertwined with spiritual life in a way that can’t be pinned down."
Click HERE for the Interview. 

An excerpt from my memoir Breathing and Grieving, 

Most people go to the doctor once a year. For those dealing with chronic illnesses, doctors are practically part of our families. Our doctors know our weekly activities; they remember our kids’ names. Take for example, our chiropractors, Dr. Mike and Dr. Heidi.

I had gone to the chiropractor my whole life. Not Pete. In the second year of his diagnosis, he gave it a try. The night after his first adjustment, he slept through the night. He couldn't remember the last time that happened. Sleeping for the chronically ill is like currency. We assume with MS that his neurons fire multiple times in order to accomplish simple tasks, like moving his right leg. This means his body is actually working harder than my body. His body gets tired quicker. Sleep was his friend. Sleep generated more energy. Sleep helped his system reboot. So, Pete started going to the chiropractor every week, and I went every other week.

Sometimes I wondered whether this was necessary for me. I experience stress for sure but do I need my back adjusted because of it? Yes. Why? This was one of the only times during my week where someone else cared for me.
Every week, they looked me in the eye and ask how was I doing. They touched me, lovingly as physicians and companions on life's journey. These two physicians knew a portion of my life better than anyone else. They saw me every week. They saw my ups and downs. They listened to my story and they held it in trust...

Pete' We still see Dr. Mike weekly. It's been eight years for me. I go more often than Pete these days. Mike cares deeply for me. He watches the changes in me, not just my back but my attitude and my energy and whether or not I'm laughing. He's developed a genuine relationship with me. 

This has begun to happen I think with Pete's cardiologists. He has two - a plumber and an electrician. In the past four months, we've been to their office at least twelve times. Pete's heart health has not been fine. And amidst us not being fine, they are respectful (they call him Mr. Scibienski) but they speak in friendly, loving tones. Pete banters back and forth with all of the staff, particularly the phlebotomist. (If we've been twelve times, he's had blood drawn at least six of those times.)  

The Cardiologist's office has a salt water fish tank. I took these pictures yesterday. 

We found out yesterday that the electrician/ cardiologist is going to have a baby. She told us as she was answering Pete's concern about a car accident they had over their vacation this past summer. He asked if they had working cars and how they were doing since the accident. She leaned back on the counter as she told us about totaling one car but not the other. She said she was getting a Subaru and then she went on to explain that she was going to have a baby and they needed to upgrade their car space. We told them about our family getting a Subaru for the same reason. All the while, none of us were itching to end the conversation and move on with our day. 

I found myself saying little prayers for her afterwards, for her health and her marriage. I found myself excited for her and so happy to know her. And a full day later, I thought about her taking some leave and I worried a little bit. But only a little bit because she has her partner the plumber and the whole office knows us and cares about us. And it'll be fine. But this small amount of worry reminds me how important doctors are to the chronically ill. It's not just the expertise and the medication, it's the relationship and feeling safe while everything in life is so unpredictable and vulnerable. 

In a healthcare climate where physicians are asked to see patients faster, where most patients often want a refill on their prescription rather than a relationship with their physician, where healthcare is expensive (particularly for those who are healthy because they are paying for those who are not), I'd like to say thanks for our team of doctors. Amidst the climate of healthcare, they also know the climate of our lives. They see the stress on my face and they see the stresses on Pete's body. In a world where the answer to "how are you?" is "fine," our team of doctors know we are anything but fine.