Gordon helped hand me things in the tub...soap, shampoo...undid the drain so I wouldn't have to bend forward reaching for things. He held my hands as I stood up, promised not to let go as I stepped over the side and found the floor one foot...the other. He guided me to the stool where I sit to dry off. I sat there, my head shaking and shifting from side to side, words difficult to form with my mouth and tongue flowed easily in my mind...and somehow a few tumbled out with my tears. A lot of "I'm sorry's" And "this is so unfair to you and the girls". "I just want you to love me the same...I just want you to know I'm still me"...and I don't know why I even question, for a 100th of a second his love for me or devotion to our sacred marriage...but sometimes I get so scared...maybe I'm really talking to myself....Maybe I need to know that I'm still me....Maybe I need to know that I'll love me no matter what...maybe.
I am at the bottom of the mountain looking up again. Every time new symptoms arrive, there is a process of grieving, of realizing that I survived the last onset of changes in my body, got used to them...they became "normal"...and now things are different yet again...maybe the new symptoms will become my new "normal"...maybe they won't go away...Maybe I really am the lady in the wheelchair with the shaking head, twitching limbs, speech that no one can understand because it is so slurred/slow/stuttered/nasal (lets not forget the foreign accent too!)...Maybe I'm that lady that little kids point at in the mall and ask their mommas "what's wrong with her?" and their mommas hush them and whisk them away whispering "don't point...don't stare...I don't know..." The lady in the chair people look at with pity in their eyes and talk to in overly kind high pitched slow loud slightly condescending voices...assuming that the lady in the chair doesn't understand what they are saying...not because they are being cruel, but because they are being kind...they are acting from a compassionate place.
I wonder, do they truly see that the lady in the wheelchair twitching is an adult person? (even though she appears small looking down from a standing position) Do they recognize that they too are the lady in the chair? or could be? She is a whole, complete, intelligent person, albeit broken, no maybes about it ... today the lady quaking in the chair is Me. Broken and whole.
This brings me to a passage in Toni Bernhard's book How To Be Sick in which she discusses Ajahn Chah's broken glass teaching:
"...Whenever you use this glass you should reflect that it's already broken. Whenever its time is up, it will break. Use the glass, look after it, until the day when it slips out of your hand and shatters. No problem. Why not? Because you saw it's brokenness before it broke!"
***please read Toni's book to learn how she has taken this teaching and crafted a healing practice through it!!! She's amazing...you have to get to know her, learn from her...I cannot recommend her book enough!!!
I could get better in a few days...back to my last "normal". I hope so, I pray that it will be so...but I might not. My experience has been that each time a new set of symptoms appear, there is some kind of lasting residual. And yes that makes me sad. And I also know deep down that the sadness will shift to acceptance and that there is room for sadness along with joy and anger and love and confusion, frustration, disappointment, satisfaction...room for all of it in my broken-body, broken-myelin, broken-heart. And this is the way of all living things, in our own time, we break.
This is where I am today. This is what I am living through in this moment. It's important for me to look at this fear...scared and sacred are comprised of the same letters...the fear is holy, it is a dark place I must enter from time to time...pass through so that I can continue to grow, accept, love my body as it is today...not yesterday, not tomorrow, today. For today...this is my "normal".
This is raw-writing...no editing ...catharsis.