Boys Meet Doctor, part two

We were right outside of Philadelphia when a conversation ensued about the value of social media. Neither son is on Facebook; one signed up for twitter just to follow a guy called "shit my dad says." (If you haven't checked him out, please do so. If you don't think he's funny, try "Jesus never said.")

Anyway, while I was defending the merits of social media, I missed my exit to the hospital. Now I'm trying to follow the GPS as it tells me that it's
recalculating. After finding myself in downtown Philadelphia, I say rather loudly, "everyone stop talking so I can get us to the doctor's office.

Three more turns and we're on our way down a familiar stretch of road when Pete erupts the social media conversation with his "dad voice" to say, "OK, here's what's gonna happen. (silence) Beth's going to pull up to the valet. One of you is going to get my rollator, the other is going to get the door." After a brief moment to process, one of them says, "Ok Dad, when it's time - just yell 'Go team red." Pete informs them that he'll do no such thing. But just as he I pulled up to the valet and Pete yelled, "Go team red."

Everyone jumps out, one with the door, the other with the rollator, me handing over the keys and in minutes we're turning the corner to the neurology suite.

I resisted for a long time asking the boys for help. They're not boys; they're 34 and 29 years old. They're successful men. One with a family of his own. But I want them to be Pete's sons, not his caregiver. I want to shield them from that responsibility. That's my "mom" reason.

But there is another reason: I don't want them to have to care for me. I'm the caregiver not the care receiver. I'd only need their help if I lacked skills or resources. Perhaps I'd need their help if I got in over my head. Their father is clearly in over his head. He has a chronic illness. Their father needs help, not me.

Here's the thing... I haven't fooled them. They know that I need help and they've been trying to find ways to help me for years. (When Dan drops our granddaughter, Julia off on Friday, he takes the garbage out.) They know that we both need help. And they would love nothing more than to offer concrete, tangible help but I'd to be self-sufficient.

After one day of taking them to the doctor with me, I've learned my lesson.

They're funny and clever and strong and smart. I need them with me as much as they need me with them. I spent years feeling alone while all the while they were right there with me. I spent years feeling weak when two of the strongest men I know were a phone call away. I spent years trying to hold things together when together we are meant to hold one another.

I understand why they don't completely understand the merits of social media. They don't need a website to be connected to that which is important to them. We're all right here in the car... and all anyone has to say is "Go team red."

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.