The Fallacy of the MS Vacation

Denial happens to be one of my favorite defenses. Intellectualization and rationalization also top the list, as this trio seems to facilitate a great "pretend" or ones that could be far more pleasant than what reality bears. They're probably no better than any of the others in the defensive spectrum, given that all are meant to protect, keep us from knowing, facing, accepting those things that are painful, have been painful or are anticipatorily painful.  One of the most important issues that I try to impress upon my patients (those with MS or not) is to be mindful of oneself. What do I mean by that? The notion of mindfulness has many implications. 

According to Bhante Gunaratana (in Salzberg, 1999), a Buddhist monk, mindfulness is "non-judgmental observation. It is the ability of the mind to observe without criticism." He goes further to say that, in order to fully observe something, we have to fully accept its existence. The next point is perhaps as, if not more important than the prior: "Mindfulness is impartial watchfulness. It does not take sides. It does not get hung up in what it perceives. It just perceives."  Not an easy process to achieve. And it IS a ongoing, conscious, highly important way of truly coming to know yourself...ALL of you.

Returning to the initial topic of denial, I find that, as with any trauma, loss or major stressor, descriptors that all seem to fit with getting a diagnosis of MS, it is common to experience some stage of disbelief that this is really happening to you. You might have a symptom here and there, maybe even serious, noticeable, debilitating symptoms AND your doctor may have shown you an MRI that has lesions corresponding to the symptoms you are experiencing, but it can still remain almost impossible to believe. While I find that many patients respond to their diagnosis by diving into learning everything they possibly can about their MS, just as many (more?) want to know nothing more than what their physician has told them, preferring to act as if they accept having it, but choosing to remain naive to its full meaning and impact on their lives. Many say that to think about it at all makes it worse, makes them upset, so why think about it? Others say, "it is what it is, there's no cure, so what's the point in spending time thinking about it at all? When I do, I can only imagine it will progress so badly that I will be in a wheelchair one day, which will make me a burden to everybody, and I just can't think about that." In fact, most of the MS diagnosed people I work with don't want to spend any time thinking about, talking about or knowing about having MS.

Ergo, interesting situation for treatment when a) many who see me for therapy see me at an MS Care Center, and, b) many who see me at this center have their therapy sessions in the very room in which they were either diagnosed or have their medical check-ups ABOUT their MS with their treating neurologist. At least when there, it's kinda hard to escape. it. Even on days when you feel really good. I.e., when your fatigue seems to have disappeared and you feel even spritely, when your pain and numbness is barely, if at all noticeable, when your spasticity has miraculously evolved into flexibility and elasticity...the MS is still there. Typically I hear about these days after the fact, and boy, do they sound wonderful. I am regaled of long walks taken, massive amounts of errands ran, going out partying, even dancing. And these events are described with joy and excitement and relief that it could be done, after time fearing that MS had taken away and would continue to take away the ability to be active and lively. This is usually accompanied by "for a day, I didn't have MS." Like a disease-free holiday. And my experience is that the day is truly experienced that way. Hello denial. Either active or unconscious dissociation of awareness that, despite what their respective experiential state might be conveying to them, demyelination of nerves remains part of their physiologically internal world. Mindfulness? Out the window...and seen more as an intruder and joy-kill than as an important aspect of self care. And then I ask how he/she felt the day after? Invariably, I hear some version of "I crashed. I couldn't move."And when I try to explore their respective awareness of how having over done it directly caused the crash, I usually hear little regret in response. More like "I'd do it again in a heartbeat."

At these moments, I try to bring them back to the idea of being mindful, of trying to be well acquainted with their bodies, with their MS and how they can actually take charge of some parts of their functioning via this awareness and mindfulness. I emphasize how vital it is to find ways to feel in feel empowered over their bodies ESPECIALLY when MS is so good at making its victim feel utterly disempowered. I suggest that, on feel-good days to not go full do what they want but maybe at half the speed they might have the energy for, so that they won't crash the next day (s). I know they don't like crashing and the subsequent effects it has on them and the people immediately around them. I typically get nods of agreement, but looks as if to say I'm the biggest joy-kill to them. Why can't I let them have their fun? Why must I ruin it?

What does it mean to simply know you have MS? Without judgment. Without criticism. Just letting yourself know it. Some would argue it’s impossible, since it’s rare (at least in my experience) to find someone with MS who doesn’t have some accompanying anger or sadness or fear the moment their awareness of their MS comes to mind. No, those aren’t judgments or criticisms, but these feelings without a doubt color the awareness in one direction or the other. So can looking at MS be a neutral endeavor? And if not, does it mean that it can’t be thought of as complex AND something necessary to have some constant awareness of in a way that doesn’t have to intrude on, impede or distort one’s experience of oneself? 

My intent at imploring mindfulness is not to negate the possibility of pleasure; it's to help MS patients have more opportunities and more days of feeling in charge of their bodies with a disease that does not take a vacation...even if we'd want it to do so. 

Gunaratana,B. (1999). “Mindfulness.” In S. Salzberg (Ed.) Voices of Insight.
(pp. 133-142). Boston, MA. Shambhala Publications, Inc.