I decided to go to the grocery store one day last week while Kim was at work. For the first time in months it was cool enough that I really needed a jacket during the day. But I just couldn’t get the zipper started. My hands refused to cooperate. I had to wonder, did this mean I had operated my own zipper for the last time, or would things return to normal the next day and remain that way for the indefinite future?

Daylight, alright
I don’t know, I don’t know if it’s real
Been a long night and something ain’t right
You won’t show, you won’t show how you feel

This morning when I transferred from my wheelchair to my shower seat I noticed that it went slightly easier than normal. I wondered what that meant. Had I stopped getting worse? Was I getting better? Did the transfer really go well, or was it merely wishful thinking?

No time ever seems right
To talk about the reasons why you and I fight
It’s high time to draw the line
Put an end to this game before it’s too late

Head games – those of us with progressive diseases are particularly susceptible. The self-questioning can sometimes be controlled but never completely eliminated.

I have good days and bad days, but it’s not like people with relapsing remitting MS who have, well, relapses and remissions. The root causes of my good days and bad days, fairly normal biological cycles, are like everyone else’s. It’s just that when your health is marginal like mine, the result of a good day versus a bad day can be poles apart. These harmless, daily variations are tough to differentiate from long-term, more permanent changes. Hence, the internal head games.

I try to figure out if I’m getting stronger or weaker, better or worse. That’s one layer of head games. But there are several other layers that I employ too. For example, how much of my constant self-evaluation do I share with my spouse, caregiver, and love of my life (that’s all one person in case you didn’t know)? If I talk about it too often I am obsessing. If I never speak of it, I am in denial. If I share optimism with her too early in the game I’m guilty of falsely raising her hopes (this is an infrequent problem, given my steady progression over the years). If I share pessimism with her too liberally, it leads us both to a place where we might otherwise not need to go.

So near, so far away
We pass each other by ’cause we don’t know what to say
It’s so clear, I’m sorry to say
But if you wanna win you gotta learn how to play

I’m aware that this process works in both directions. Like me, Kim has to pick and choose when to speak up about her observations, or when to ask me questions that may clarify or confirm her observations. My disease progression is a roller coaster ride for both of us, but I’ve got a slightly better view than she does of what’s ahead on the track.

I daydream for hours it seems
I keep thinkin’ of you, yeah, thinkin’ of you
These daydreams, what do they mean?
They keep haunting me, are they warning me?

All these communications challenges exist, yet Kim and I have a wonderful relationship where openness and honesty are abundant. I can’t imagine how much more difficult this must be for couples who are not in such a good place. It tears marriages apart.

What about my doctors? They want to know how I’m doing – it’s their job after all. Sometimes I prepare a thoughtful response to this predictable question, often bringing notes with me. Other times I wing it. Nevertheless, I frequently leave the appointment unsatisfied with the conversation we had, not because of the doctor but because of me. Damn, I should’ve mentioned this, or crap, I meant to describe my situation this way. I am extremely witty and well spoken- in retrospect.

Why do I put myself through these compulsive self-evaluations? Haven’t I expounded here at length about how important it is to stay in the moment and enjoy each day for the gift that it is? When I’m not undergoing some experimental treatment (which is every treatment I’ve ever undergone because there is no approved treatment for PPMS), then I don’t obsess so much about my progression or lack thereof. There’s nothing I can do about it, so why worry?

But when I am evaluating a treatment, like now, it’s easy to fall prey to the head games. Those periods of time in the past eleven years when I have not been on any experimental treatment have, oddly, been some of the most stress-free stages of my disease progression. I’ve become skilled at acceptance. Fighting back, however, is hard work.

Next week I will have my fifth intrathecal methotrexate treatment. The doctor will ask me how I’m doing, so I guess I better think about a response. I can’t say that it’s definitely working, but I can’t say that it’s definitely not working either. I’m trying to figure it out, but the answer eludes me. So I’ll forge ahead and continue the treatment, while trying to stay grounded, objective, and hopeful all at the same time.

When I have dreams about suddenly being cured and standing up from my wheelchair, and I do have these dreams, I’m not only happy for myself, but also for Kim. Nothing in the world would mean more to me than removing the weight of my sickness from her shoulders. That’s why I keep searching for the positive every time I transfer from my wheelchair, every time I brush my hair, and every time I operate a zipper. Despite my better judgment, I keep the door of hope open, if only a crack.

Daylight turns into night
We try and find the answer but it’s nowhere in sight
It’s always the same and you know who’s to blame
You know what I’m sayin’, still we keep on playin’


Head games, that’s all I get from you
Head games, and I can’t take it anymore
Head games, don’t wanna play no…
Head games

Note: To see all of my intrathecal methotrexate posts, click here. They are listed in reverse chronological order.