This article follows on from,
and explores how building "aliveness" has gone hand in hand with my own progressive symptom reduction.
While I have come very far in the last two years, I am still reliant on a drug for Parkinson's Disease (Madopar) in order to move freely. Without the drug, or as each dose wears off, I still fade into what is called the "off" state in the parlance of PD. This is a state which I have now identified with a Death Feigning fear response which my nervous system has gotten permanently stuck in - a state of "Emptiness". The medication allows me to temporarily switch back "on" for a couple of hours. More precisely I now feel, the drugs allow me to expand in to a state of "Aliveness" by activating my "Life Force", and through it, access to movement.
This cycle still occurs a few times each day for me currently. However, the contrast to two years ago is quite stark. Back then I was literally near-Death and dying fast. Then, in my Death Feigning or "off" state, I would be in a much deeper Freeze, with more "rigor mortis" (rigidity). I was literally a zombie. Now I am much more functional - half-alive instead of near-dead - while symptomatic, unless having a really bad day. Even when the drugs switched me on, back then, it was not into full Aliveness, but into another half-dead, unfeeling, empty state - that of permanent Fight-Flight which I had pre-existed all in my life. Moreover, I was taking so many drugs that my movement (and emotions) were uncontrolled, I would go over to a state of dyskinesia which could be worse than the symptoms. Some of the drugs (ropenirole) I was on then actually made my Fight-Flight much, much worse than before.
Things are much better now, and when the drugs are working in my system, I feel more Alive, more free, more mobile, more at peace, more in charge, more feeling, more engaged, than I ever did in my whole life, by a very long way. Yet, I can't just lie back and wait for the drugs to work anymore, quite literally can not, because I have been habitualized on them for too many years for them to be reliably effective anymore. So while I still need their outside help with my Aliveness, it is not enough, and switching my Life Force back on requires me to help myself, to find the spark within, and to fan the flame.
While I am getting much better at relaxing through meditative and visualization practices, and increasing my ability to free myself from physical pain and mental anguish, this alone is not enough for me to be able to move again. Movement requires movement. So now, I rest a while, completely immobile. Then, I try to move. I begin to struggle.
Still lying down, I may turn my head completely to one side on my pillow, rest a while, then turn my head 180 degrees the other way (literally turning the other cheek). I may put my hands under my feet, becoming aware of the pulse through my compressed finger tips. I may try to become aware, without judgement or forcing, of my own breath too. I may need to consciously lick my lips, and adjust my tongue position in my mouth in order to quieten my own inner voice enough for me to be able hear my heart or exhales. I may try to express my inner feelings and emotions as fully as possible on my face, even if those feelings are anger, pain or sadness. I may swear. I may cry.
I may then take a different view - looking left as far as possible, then right, or taking diagonally opposite perspectives. I may try to see the bigger picture by engaging and expanding my peripheral vision.
I may self-touch, self-hold, self-sooth, by moving my hands to my head, my face, my heart, my belly, and squeeze or pulse my fingers the best I can, or wrap my arms around myself.
I may need help to put myself in these positions or access soothing touch, may need to ask a family for assistance, freely, without guilt or shame, and gratefully receive.
I may alternately curl myself into a tight ball, that most self-protective position, and then stretch legs out and arms up over my head, hands intertwined, the vulnerablist of positions, feeling the differences.
And then I rise. I try to walk and stand tall. I try reach up as far as I can. I try twist this way and that, turn around, spin, spiral, ever expanding my range of movement, seeking new configurations I haven't yet managed to reach before. I try to break my body's line of symmetry. I try to play, with sensory stimuli. I try to look into the eyes of a loved one, or just exchange a few words, or look myself in the mirror, stick out my tongue good naturedly and try to widen my eyes as much as possible, try to see the life still in me.
It doesn't always work. Often I just have to go back to lying down and resting, completely immobile, sinking back into the Emptiness. Then I begin my struggles all over again. It may take several rounds, over one or two (or more) hours, for the combination of external help of the drugs and this internal struggle for connection to my life force, to switch me back into Aliveness. Sometimes I do something, make a manoeuvre which makes things worse, triggering me, sending me plummeting back into the depths of Death Feigning and rigor mortis.
But I learn as I go from all these mindful expansions and contractions. I hone in those moves which increase my Aliveness, and learn to avoid the ones which pull me back to Emptiness. Slowly, but surely, I continue to get better. From near death, I move towards Life. My stamina for moving and range of motion continues to increase.