In the past few days I have felt so much anger flaring, my temper has been on the cusp and overflowing onto everyone...I yell at the girls, am short with Gordon, I am muttering and crying to myself, fuming, frustrated...wondering...is this the medicine finally kicking in? I know mood swings are a possible side effect...well maybe that's it...or maybe this is simply the act/art of grieving for the loss of independence. I am home bound. I cannot drive my car right now. I am dependent on others to make meals, help with our laundry, even to get out of the bathtub lots of days. WE need more help in our home...I have to face myself in this mirror and see who I am right now. I am a person with disabilities that are immensely challenging. I am lonely. When friends do stop by I talk nonstop with whatever charming accent arises (or shifts through the conversation).
So Viv, my darling friend in an attempt to reframe the situation (with humor of course) suggested we change the phrase from "home bound" to "gnome mound"...I visualize mysef tucked away safe and secure in my gnome mound for the winter. And when visitors (social workers or homehealth aids) come...they will at first be strangers...but with my chattiness...that can't last too long...they will become my friends in a way, or at the very least they will be my little gnome assistants, and the assistance they offer will allow me a new kind of independence.
I can say this, I can reframe...but the feelings are even more intense than getting into my wheelchair in public for the first time...answering the phone and being questioned by a puzzled voice "is this the Hegfield's?", because I sound Belgian or Mexican or Chinese or Irish or like a toddler picking up before my Mommy can get to the phone.
On Thursday I will go to see my neurologist...we will go over my MRI's (remember the Rocky theme? and the 3.5 hours of MRI's?)...we'll talk about a lot of things I suppose...like how will I know the medicine is working? Somedays I feel a little more energy...other days I'm completely wiped out...somedays my gait is better...other days I feel like I'm walking so slow I'm going backwards...I had my voice for a few hours on two different occasions...but that was around Thanksgiving...somedays I have no problem accessing words (even though I pronounce them oddly)...otherdays they are out of reach-lost somewhere in the recesses of my mind. We will talk about possible social services our family is eligible for. Maybe someone can come evaluate ways to alter things in our home to make me feel safer (like in the bathroom)...maybe we can have someone do light houskeeping and grocery shopping so Gordon doesn't have to do everything and can show up at the office more often (fortunately so far they have been cool about him working from home).
My friend Noreen held up a mirror for me today too..reminding me of my holiness...that my life experiences have similarities to those of Rebbe Nachman (a true Tzadik)...and then reading in Jan Lundy's book Your Truest Self, I read it again...this truth I know, but sometimes hide from myself when I am feeling low...that I am holy...we are all holy...maybe especially when we feel lonely, frustrated and angry...because those feelings (at least for me) inevitabley give way to peace and ease once they move through me...and holy means WHOLEY...all of it...the good the bad the ugly.
And Sandy came today to my home to give me an acupuncture treatment as a gift. She told me about an incredibly holy woman she assisted at an ashram in India...a stiring story in which she; my friend, mentor, healer, Sandy had an active role in helping this fragile 93 year old nun regain her vitality...and again...big reality check for me! Holiness/wholeness is abundant...despite the emotional roller coaster inside my mind...my life is so, so good. This helped me regain some peace and clarity.
I read blogs about others who are in far worse situations than me and my family...and my heart aches and breaks for all of them...but still it aches and breaks for my kids, for my husband, for me too...this is also my reality...this week humor has been difficult to find...but in bits and pieces it arises. And I know I am blessed by so many friends, by my family, by Shekhinah (God's indwelling Presence)...so I'm holding it all...like a bouquet of wildflowers...some are thorny, some smell sweet, all are unique and part of the whole that is my life in this moment...I hold all of these colorful, textured flowers in my shakey hands...gently because wild flowers are hardy when rooted in soil...but fragile once they have been disloged from that mound of earth.
I do think they will bring freshness to my gnome mound...new perspective, new ideas and images to ponder...and I can harvest the seeds when they become brittle and dry and plant them in the spring to see what grows.