Team Scibienski

When Pete was first diagnosed, our son's girlfriend (now wife) suggested that we register for an MS walk together. She said, "We'll have our own Team Scibienski." The sentiment was loving and she intended to find a way to come closer to me in my grief but all I heard was that we needed a "Team Scibienski." And at the time, I couldn't imagine needing that much help. Will our life really need a team of help? After I thought about her idea for a couple days, I told her that I wasn't ready for "Team Scibienski." She lovingly gave me grace to be me and she found other ways to relate to me in my grief.

A lot of people do exactly what she suggested - rushing into the cause or jumping into friendship with people who share their particular chronic illness. We couldn't do it. Quite frankly, we didn't want to be with people who had MS. We had plenty of MS ourselves. I know others feel like we do. In fact the leader of the first MS support group we attended blurted out, "I hate being with people with MS." He was the leader for crying out loud!

We couldn't do it. It's actually not until recently that either Pete or myself has been able to research without tears overwhelming us. At some point our youngest son even said to his father, "Why aren't you reading everything you can get your hands on? That's what you taught us to do. We have a question; we look it up." My only answer: Denial and Fear are two of the most powerful forces in our world.

I wasn't ready to need an entire team of people to take care of my husband. I didn't really have a handle on what our needs were: his or my needs. So Team Scibienski was out of the question.

As time went by, we did begin to form a team of folks who care for us. It began with our primary care doc (an internist); she was the first to share MS with us. A neurologist was needed to confirm and when we finally settled on the third neurologist, she would manage our team.) We needed a cardiologist to distinguish some confusion on the MRI. And when other symptoms emerge, we add players to our team. Right now there are seven physicians who play regularly.

We've been hanging out with our team lately. Anyone who cares for someone with a chronic illness can attest that there are seasons in our life that are spent in the doctor's office. One visit often leads to another visit and then potentially to another. They work together and the best advice we ever got was "always give them a list of other doctors with whom you would like them to copy their office notes." It's easy and they understand that working together is essential on Team Scibienski.

In addition to the physician players on our team, there's me. Sometimes I feel like the coach, sometimes the over-used pitcher and sometimes I'm running all over the field. It's in those times though... the times when I'm clearly playing too many positions that I remember the initial offer for Team Scibienski. And then I realize I'm not alone. Our immediate family remains suited up, just like me. And our larger family probably keeps their uniform underneath their work clothes like Clark Kent. Our community of faith is one phone call away and they're ready to pitch, field flies, or sell t-shirts.

Our youngest son youngest son wants to push dad in an MS walk this fall. I'm still not sure about joining them. But I'm wondering - with so many people on our team already - maybe I should at least make t-shirts.

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.