I’ve started painting again. I still have my downstairs studio, but I’ve moved an easel upstairs where the light is more true. I load my brush with reds and yellows and layer the canvas, creating ridges. There is some blending, some melding of hues, but it’s mostly edges, lines keeping the colors separate as if any bleeding, any joining would only invite chaos. This clarity stills me, quiets my heart, helps me believe in the possibility of suspension where something as fluid as paint can be stopped, held back. Relapse. Remission. Relapse. Remission. Hoping the ridges always hold.
I remember being energetic. I remember accomplishing many things daily and the subsequent feeling of satisfaction in a day’s work or in a day’s play. I remember thinking that ‘being tired’ meant being lazy or uninspired or bored or, worst of all, boring. That all a ‘tired’ person needed to do was pull up those bootstraps and see what a fine world was in front of them! These thoughts have marched alongside me these many years with MS. They became an entity on their own; a persistent voice that continually pushed, convincing me that attending to the fatigue would spell failure. Failure to ‘rise above’. Failure to beat something as simple and basic as fatigue.
I am now retired; my time is no longer mandated by work obligations. I eagerly anticipated an increase in energy once the workload decreased. This has not happened. So, at my last neurology appointment, feeling a profound sense of defeat, I asked my neurologist to explain — really explain — why my body is draped in this most weary part of MS. So here, paraphrased, is my Doc’s explanation:
‘When you see someone just finishing a marathon, do you expect them to be fatigued, exhausted, tired? Do you expect them to perhaps even collapse? Do you accept the fact that they have pushed their body tremendously and need to recoup? Of course you do. We would all expect that person to need some downtime before they had their energy back. Well, your brain is that athlete. Actually, it is a super-athlete. It is never at complete rest, some part of it is always working. It masterminds every other part of the body. And with MS the brain is always working overtime. When neural connections are diminished or compromised, or even completely malfunctioning, the brain has to work so much harder. When it bumps up against a faulty neural connection, it tries to construct a new working connection. And if that doesn’t work, it will take another route and try to set up another connection. The brain will go on and on, trying to make new pathways that will successfully function.’
He continued, ‘And even with all this effort, there is not always success. But the effort is exhausting. It is like running a marathon over and over again with no rest. And the energy that the brain needs to do all this extra work is taken away from other body functions. If the body is not allowed to rest and replenish, then the exhaustion just builds and builds until there is a consistent overload which results in utter exhaustion. The brain is no different than any other body part that is overworked or stressed. Rest your body (and, therefore, your brain) on a regular basis. Understand that you cannot do what you used to do. There is no point in working against your own brain. Manage your MS by understanding the parameters that fatigue places on your lifestyle. Be creative and work with the fatigue. Understand it. And each and every day, prioritize. You cannot do it all, so do what is most important to you. That is not failure. It is wisdom.’
This explanation stayed with me. After all these years, something clicked. I left that appointment with a perspective which I am trying to incorporate into my daily life. And it is surprisingly difficult, but I’m trying.
I have always been an overachiever in terms of effort. But never an athlete. I now visualize a marathon runner in my brain and feel quite smug. A little out of breath, but smug.
I have a friend who is a psychologist. She specializes in issues around loss and acceptance. As a friend, she has always advised me to make friends with my MS. She suggests that there will be a constant internal conflict if I see the disease only as an antagonist. I suggest that there will be conflict if I accept it as a friend.
As my disease moves from its pattern of stability toward one of progression, I often think back to my friend’s advice. I am aware of the relationship between stress and illness and understand the importance of inner peace; that the conversations between mind and soul need to find stasis, need to find a quiet meeting place. That in order to move forward, or even to move at all, we need to still any internal battles; need to negotiate some kind of settlement between opposing forces: friend or foe. Gift or unwanted visitor.
This MS is not new to me. It’s been with me exactly half my life. So, one would think that we had a strong bond by now, it and I; perhaps a mediated truce. If so, it has been decidedly one-sided. During the first 25 years of my disease, I was consistently grateful. Grateful that I healed after each exacerbation: grateful that my vision returned; grateful that my drop foot corrected; grateful that my flesh stopped burning; grateful that my chest spasms stopped ripping through my torso. So, yes, I did have a relationship with my MS. I saw us as a kind of partnership; kind of like ‘good cop, bad cop’. I understood the reality of housing this unwanted visitor, understood our roles. It ravaged and then repented, and my job was to be appreciative and grateful at the repentance.
And now, this visitor has taken taken over other rooms in my house, uninvited. Rearranged stuff and shifted things around. No discussion, no negotiation, nothing. A GPS gone awry. And I’m not feeling friendly. Not overtly rude or obnoxious, but definitely wary. Very wary.
I was driving with my niece and my great-niece today — the day was warm and full of summer color and I began thinking about the many things to look forward to. It has been a rough year and I am just now starting to see the possibility of light at the end of the tunnel. Driving through the cozy suburbs with a coffee in my hand, I was thinking how good life is — so much to learn; so much to do; so much to see. I love to write and I love to paint. I have family to tend to and animals to care for. I have a wonderful partner with whom I plan on growing old. But we arrive at our destination and as I struggled out of the car and stood unsteadily, leaning on my cane for support, I was struck with an ominous weight of longing. A longing for life to continue and for this disease to plateau; to at least not get any worse.
I was diagnosed with MS 27 years ago at the age of 27. After a couple of years it was evident that I had relapse remitting MS and not primary progressive. For the next 25 years I experienced many attacks but I was blessed with a body that excelled in healing and/or rewiring itself after each attack. And then two years ago things changed and slowly, bit by bit, I began to experience physical changes that were not going away; my body was not returning to its previous capabilities. And now, for the first time, I am confronted with the very possibility that I felt I had outrun; the possibility that this disease may, in this lovely middle part of my life, begin shutting me down.
I’m writing to distract and unravel. I’m writing to learn the ways of this shadow. ‘Keep your friends close and your enemies closer’… I’m writing to keep ahead of the enemy.