Sometimes a choice arises that is totally unanticipated.
I’ve been very fortunate. Although I’ve had CFS/ME (Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis) for thirty-one years, I’ve never had the non-epileptic seizures that are often part of this neurological disease. Until about a year ago. At that point the regular night-onset exploding headaches started to occasionally be accompanied by blinding flashes of light and bed-side-lamp-busting thrashing about. (And yes, after more than three decades I have tried the full range of bodywork, inner work, spiritual practices, energetic healing modalities, functional medicine, food plans, supplements etc. etc. etc.- often with positive results on many levels.)
Two months ago a dear friend with a different kind of nerve/neurologically caused pain tried a new medication and stopped having the daily headaches that had plagued her for decades.
Intrigued, I spoke to my doctor. I’d been resisting meds but, as my doctor’d pointed out, the trouble with seizures is, even if you’re willing to ride out the pain, they may damage the brain (and with two parents with Alzheimer’s I’m particularly keen to protect all the brain cells I can.)
And so the experiment began.
Over the next six weeks there was good news and bad news. The medication (at the smallest dosage I could get, which was less than one tenth of the daily recommended amount) stopped the night-time inner lightning show and the ensuing pain that had often left me struggling and recovering for three to four days a week. Yay!
There was, however, a down side: My never-too-great-energy plummeted. Despite being reassured that my body would “adjust” in a week or two, the decline was continuous. Twice I had to talk well-meaning strangers out of calling 911 when I had to lay down on the floor- once at the post office, and once in the laundry room of my apartment building. (It sounds dramatic I know, but it did seem that laying down and resting until I could move on was preferable and considerably less dramatic than falling down.) By the end of the six weeks it was regularly taking me at least an hour (sometimes two) to muster the energy needed to get out of bed and take the four steps to the bathroom after waking.
Needless to say, not much writing was happening. Or reading. Not much of anything was happening. I was pain-free but unable to walk around the block.So there was the choice: deal with pain or be pain-free but unable to do anything. To my surprise, my preference was clear. Pain is not fun. Pain takes a lot of energy to manage. But, with good practices and lots of grace, it can be managed at least some of the time so I can participate in some of what I love- so I can write a page, read a chapter, walk in the park, do a little yoga, visit with a friend or my sons. . .
So, I stopped taking the medication. This was my choice for now, with this particular med. If the pain was more or the dulling of my senses with the med less, I might have made a different choice. And, I am no purist- I do at times use meds to help me manage the pain.
Having chosen, I felt oddly elated. It felt like a confirmation of my love of life, an affirmation of my choice to be here even when “here” involves pain. The medication encased me in a pain-free fog of deep exhaustion, made me feel like I was sitting (or laying down) outside of life.
It strikes me that this is often a choice we have to make because life includes discomfort in a myriad of forms: grief, loss, uncertainty, anxiety, physical pain, trauma, etc. But it also includes laughter, joy, love, caring, creativity, ecstasy, belonging and all that good stuff. And if we want to be awake enough to feel the latter, we will encounter- and feel- at least some of the former. Don’t get me wrong- I am not glorifying pain. I continue to explore ways to have less pain and more energy. But a solution that eliminates pain while taking away the sense of participating in life is not, for me, any solution at all
There were a lot of things I could not do in the last six weeks, but I could pray. Some days, I felt like I prayed continuously (when I wasn’t asleep.) Oh it wasn’t all enlightened gratitude-and-love-filled murmurings. I prayed in desperation and confusion, seeking understanding, expressing frustration and letting the tears flow. I prayed for the strength to get up off the floor. I prayed for calm when panic seemed more reasonable. I prayed for patience and wisdom.And I prayed for the world, for the earth, for the creatures of the land and the water and the air, for the human family and for those were suffering close by or far away, In particular, I prayed for those who were ill or in pain who did not have a warm cozy nest of an apartment in which to rest or good health care, clean water, and nourishing food. (Prayer is sneaky that way- if I sincerely start from where I am it opens my heart to myself and then, inevitably, to others and the world.)
And. . . having made the choice that was mine to make at this time, I prayed in deep gratitude for the Sacred Presence that is always with me, that holds me and helps me and gives me life. It’s like a little miracle really, how connected we are to life- how we are life- even when life is not easy. What we are made of is stacked in favour of choosing life, and I am truly grateful for this, for being here, for the ability to feel what is in this moment.
Oriah (c) 2014