Personal limits

Not a lot phases me and I generally don’t care how people judge me, my clothing, my cane, and many other things … But a few things, I’ve discovered I am very sensitive about. Some I have been lucky enough to avoid (such as using a wheelchair — I decided not to get one, but exploring that issue led me to my invaluable flipstick cane). Others are harder to escape, such as cognitive impairments (and perhaps, though it’s hard to know given how fresh it is, the idea of having a relapse).

Last Sunday, I gave a talk on my lyme work in a (friendly) audience of about 140 people who care about health and wellness informatics. The talk went well, and the questions too, up until a long-winded, two part question. I planned my answer as the speaker spoke. He finished, I responded: “In our experience… [here I realized I had forgotten his question and my answer… so I stalled for time] … we found that… [now I know it’s not coming back easily] … give me a second please.” I pause, flustered and unsure what to do. My mind races. I don’t think this has ever happened to me before, I should have brought pen and paper, my brain hurts as I try to breach the fog, this is not me, and … I hear an audience member quietly repeat the missing part of the question. Too quietly, given my hearing issues, for me to understand it. “Can you repeat that please?” and she does, and I answer, and even remember the second half, and it is over.

The remaining questions go smoothly, and I sit down on stage among the other speakers as the next person takes the podium. I am relieved and overwhelmed by what just happened, by my fears of relapse, perhaps by the very topic of my talk, and realize that I am blinking tears back. I blink hard, repeatedly, hoping to stem them, but I have friends in the audience, who know something is wrong. I see this because they are moving around in the corner of my eyesight like fireflies, trying to figure out what to do as I turn to look away from the audience over my shoulder at the next speaker in an attempt at privacy. It is impossible to believe, yet I am not the center of attention. The audience cares only about the next speaker, and if I am careful I can keep it that way. As the speakers switch I swiftly exit, and I find myself in an empty hallway full of chairs.

Now I give in to the tidal wave of emotions. It takes an eternity, or perhaps just a few seconds, before my friends and husband find their way to me, and hold me. They move forward into a perfectly irrelevant conversation as I shake like a leaf and try to follow their voices back to normalcy. Even so, when all but my husband have left, I must give the emotions and tears room inside me once again, and again later that day after my attempt to rejoin the crowd with my blue/pink eyes leads to an hour of conversations I am simply not interested in.

What a reaction! To something that happens to speakers often enough that it is barely noticed. Of course, there was more underneath it, and the next day, when I attempted to attend a talk on support networks for cancer patients (and how and why they fail) I had to leave partway through because it cut too close to home. There are many explanations for why my reaction to both things was so strong, and certainly the reality of dizziness, cane, headaches, weakness, and so on after 6 wonderful months of being myself again was part of this.

At the same time, I think the cognitive symptoms, in particular, deserve special attention. Perhaps in part because of my position as a teacher and scholar, the possibility of losing clarity is the most fearsome of all my symptoms. Many of us carry a prejudice that cognitive impairments somehow imply the loss of personality or intelligence. However, the absurdity of this is clear to me when the impairment is my own. Does the occasional presence of memory loss, word substitutions, or brain fog mean that I am not me? Certainly not. Similarly, not a memory lapse does not change my my overall capabilities, and an episode of fog or a bad headache does not mean I am less of a scholar.

Many coping mechanisms exist. Writing things down, doing focused work when the fog lifts (whenever that may be) writing more things down, being prepared, these are strategies that any busy person should know. I counsel my students to find the time of day they work best and protect it, to take notes, to stay organized. When cognitive symptoms arise, these habits become far more crucial. Luckily, they are habits we are sure to benefit from cultivating even when the symptoms fade. In the end, it is how we work within the constraints posed by the occasional (or ongoing) problems we face that determines our overall success, not the mere presence of cognitive difficulties. And if mine are to come back, I need to face and accept them, and to cope with them effectively.

Better yet, perhaps I can use them: There is a ongoing conversation in some academic fields about the need to give the subject matter of the field a voice (e.g., disability studies and people with disabilities). What little I saw of other health talks in my field this week suggests that patients don’t have enough of a voice in the dialog about healthcare technologies. Patients face complex problems in managing their lives while sick, problems that play out over time and are not easily solved by the simple application of technology.  In addition to managing life, however, patient expertise is an important part of managing treatment, and there is a fuzzy line between people and doctors when it comes to medical decisions. In settings where doctors are unavailable (such as some developing countries, or in a contested illness), this becomes especially obvious. Perhaps the doctor as (sole) expert needs to be expanded into the doctor as consultant or partner. But I am starting to get the feeling that I have strayed off topic (and into a new research project, perhaps), so I will pick this thread up some other time.