“Hey Charlie, hold up!”
I pause on my way back to the waiting room and look over. There is my neurologist down the hallway, waving me down. I loiter and watch as she juggles several files in her hands, putting down this, picking up that.
“I’m ready for you” she says as she walks towards me. It isn’t until hours later that I appreciate the deliberate care necessary to call me Charlie, when the last time we met I was still Kim. That thoughtfulness is indicative of the care I receive at this hospital.
As she passes me at a brisk pace, I follow and quickly catch up with her. As we walk along there is time to chat, to say hello, for small talk, but I’m tired from my drive. I prod my brain, but nothing comes to me. I say nothing. She says nothing. Soon enough, we arrive at the appropriate exam room and sit in our respective places.
After we’re both settled, she asks me “So, how have you been doing?”
I knew she’d ask that. How else would she start our meeting? I planned ahead and made notes about what I would say, loosely. With a briefly-lived sense of triumph, I whip out my mini notebook and look at what I have written down.
Damn. I didn’t organize my notes; I didn’t put them in the order of a normal conversation. I just listed thoughts as they came to me. Not very helpful now. What goes first? What will answer her question? I look down my list and try to get my tired brain to jump on command, to find the right response. My mind only manages a heavily sedated shuffle, so I decide to start with politeness.
“Good, I’ve been good.” That’s a safe, polite response. “Some things have gotten better since that last time I saw you.” True, without being overly effusive.
Now what? Ah, here we go. “My PCP increased my thyroid dose last year, and since then I’ve had more energy. It’s really made a difference in the quality of my life, things are much more pleasant. I mean, it hasn’t fixed everything or made me ready to work or anything, but the little things. It’s helpful.”
I quickly balance that with the greater truth. The truth I try not to notice very often because it would drive me crazy, but the truth every doctor and decision-maker in my life needs to know. “I am still very limited. I have fatigue every day, every single day, that interferes with my ability to function. All my other symptoms are still around, too.”
I fear saying anything too positive from habit. Overly positive things, words denying or ignoring my limitations, are dangerous. This medical professional only sees me for 30 minutes or an hour once or twice a year. I present well – I know I do. The caffeine helps. Since I don’t looked screwed up, I have to use my words to paint a picture of my life and my daily challenges. My default, my tendency is to gloss over problems and focus on the positives. I know that. So I make a deliberate effort to tell the whole truth, both good and bad.
Our conversation flows naturally and easily. I’ve been seeing her for several years now. We chat back and forth, and I refer to my notes often to make sure I say what I have to say, and ask what I have decided to ask.
“I’m investing my extra energy into making friends, to developing friendships.” This is something that is very important to me. Making and growing my friendships now will create the stable and secure foundation I need to be healthy.
“Since upping my thyroid, I have started being able to read more complex writing. I joined a writer’s group, and most of the time I’m able to read through writer’s work and participate during the meeting… most of the time. Sometimes it’s too much, but usually I can do it.” I still struggle with reviewing 40 pages of other peoples’ writing twice a month. It’s gotten easier with repetition, but it is still hard and takes hours of my time and energy.
Overall, my neurologist seems pleased that I’ve had marked improvement. I definitely am pleased. She offers some advice on supplements. I request her analysis of several alternative therapies I haven’t tried yet. I ask her to make sure to put detailed notes in her office visit report, specifying my limitations. She kindly adds several diagnoses to my chart. Another good meeting.
As I climb into my car for my return trip, I assess my energy. Low. I’m exhausted. I woke at 3:30 am this morning and couldn’t get back to sleep. I already drove 2 hours to get here and I have 2 more hours of driving to get home. Out comes the caffeine I expected to need for the return journey. After some rest, some food, some time for the caffeine to hit, I’m on my way.
In another ten months or so, I’ll make the trip again. Not because anything particularly earth-shattering is happening at these meetings. No, I’m not going to be cured here. Rather, it’s all about documentation. Documentation, documentation, documentation. In order to continue to have the space and time and money I need to heal, I have to document and prove my disability on command. So I do.