Originally sent to friends and family as a letter, my friend Janet talked me into posting this. It summarizes the last 3 years of my life, especially last year (2004).
It is the end of the year and the anniversary of my stroke. I find myself contemplating what has transpired since that fateful evening and where I am headed. If you consider coming back to life as a birth, then I am now 3 years old. The aneurysm that exploded in my brain on December 30, 2001 apparently attempted to kill me a number of times over the next two weeks. I was awake some of that time, talked with friends and medical personnel, even gave my opinion on matters of treatment. Too bad I don’t remember it. I started developing the skill of mental recall about a week after brain surgery.
Today I look back on that time in my life and I marvel at the miracle of it all. I was lucky. I was with friends. I was rushed to a hospital where the attending physicians knew what they were doing. I got transferred to another hospital where the west coast expert on aneurysms and AVMs performed microsurgery inside my head to stop the bleeding and remove the cause of the stroke. Nearly anywhere else in the world and I’d have been a goner. Under less fortunate circumstances I would have been an angel here. I guess it just wasn’t meant to be.
So much has transpired in the past three years. I am way precocious for a 3 year old. I read, I drive, I vacuum the carpet (occasionally), I lead groups, I shop for groceries, I have long conversations with friends, I am a hospice volunteer, I use a computer. I am glad that I have been able to recover as much as I have. I am pissed that I have lost a lot. My balance continues to be precarious. I am learning to live with it. I almost always catch myself before I fall. Bruises here and there attest to the fact that my entire body gets in on the act of keeping me upright. There are times when I feel as though I can walk normally. Other times I am awkward and my arms rise up and out as if what I really need are wings.
The tremor that used to rattle my body into a nearly perpetual state of being sea sick has subsided sufficiently for me to use even my left hand. Yes, it still shakes, but I have adjusted to its constant motion and can use it for all sorts of tasks. Just in this past month, I have been able to teach my fingers how to touch type again. Poised over the keyboard my left hand wobbles up and down, side to side. As I begin to concentrate to type, the fingers move as directed by my brain. Well, most of the time. I am never going to be a fast or particularly accurate typist, but I do well enough to move my thoughts into letters, words and sentences. Despite a good deal of practice, I have not been as successful with handwriting. There is no tremor in my right hand, but after 15 or 20 minutes of writing I am exhausted and in pain. Not surprisingly, I am not very motivated to write by hand when I have the choice to use the computer instead.
2004 year at a glance
Jan…Back at school (Santa Rosa Junior College). President of ABIS (Acquired Brain Injured Students).
Feb…Joined the waiting list for Santa Rosa Creek Commons, an intentional co-housing community in town (average wait time is 7-9 years).
Mar…Chosen as Netkeeper (comparable to administrator or director) for 2005-2009 at annual Gathering of the Wilderness Guides Council. Began attending a weekly creative writing group for women.
Apr…As a designated batter, hit a single for the ABIS softball team. OK, it was a slow month.
May…Finalized an employment program through the California Department of Rehabilitation with goals to become a non-profit administrator and a vision quest guide.
Jun…Co-guide on women’s vision quest, Inyo Mountains.
Jul…Co-guide on coed vision quest, Inyo Mountains. Met with Advisory Council of WGC to develop Community Guidelines.
Aug…Participant in Ranger Renewal Fast vision quest for WGC members – West Clear Creek Canyon Wilderness, Arizona. This was my first VQ since the stroke. I needed and had lots of help.
Sep…Turned 54. As chairperson of the committee, prepared for ABIS annual event – Brain Injury Awareness Day.
Oct…Served as emcee at BIA Day. Traveled to South Africa for the 2nd International Wilderness Guides Conference and a scenic tour of the Kalahari Desert region.
Nov…1 year since I got a car and began driving again. Spent much of the month sick with a cold and exhausted from the trip.
Dec…Met with WGC Gathering Council to work on plans for next conference to be held in Anza Borrego State Park, Feb 05.
My writing skills are improving. It really helps to be in an instructed group with other talented writers. With the exception of our teacher, Susan Hagen, none of us are professional authors. What we share is a passion for delving deeply into our life experiences through writing. We are one of a number of StoryCircles that Susan leads. It was in this class one night last summer that I wrote “Desert Walk”, a story that was recently published.
With the help of my good friend, Janet Tokerud, I just created two new websites. Actually they are weblogs, more popularly know as blogs. My personal blog, entitled Becoming Sage, will be a place where I self-publish some of my writing, report on issues of interest to me, expound on politics, share stories, express opinions and write about whatever is up for me. It is organized chronologically with the most recent entry appearing first. I hope that you will visit and bookmark my weblog…
http://tomyris.typepad.com/scout/
Beginning on January 1, 2005 I will be the Netkeeper for the Wilderness Guides Council. The organization was originally established in 1988. I became a member in 1998 and have attended the annual Gathering (our version of a conference) since that year. Our membership is composed of people who lead vision quests, rites of passage, and similar ceremonies mostly in wilderness places. A few years ago we officially became a non-profit. Netkeeper is the title we bestow on the primary administrator, bookkeeper, executive director, president, communications coordinator and s/he who serves the needs of the WGC as needed. Our Netkeeper commits for 4 years and is paid a modest monthly stipend.
So, that’s my new part time job. This is my first foray into employment since the stroke. I have done a few things to earn a little extra money in the past couple of years, but mostly I have been working on recovery, going to school, volunteering and occasionally leading a vision quest. As an adjunct to serving the WGC and to supporting the vision quest community, I set up a second blog…
http://tomyris.typepad.com/netkeeper/
This past year I became the first person ever to have as part of their employment objective with the Dept of Rehab the goal of being a vision quest guide. I am already achieving that as an independent contractor. Now I am also becoming a non-profit administrator. In the next few years, I intend to supplement learning on the job with courses at the Resource Center for Non-Profits, SRJC and possibly SSU.
If my recovery stays on course, I could be on my own financially within the next few years. Frankly, the prospect is a bit frightening to me. I do not have anything close to the amount of energy or concentration I had before the stroke. Others with similar conditions to mine have reported recovery in 4 to 6 years. So I could be half way there. I could also never recover completely. It remains to be seen. In the meantime it feels as though I have been propelled into the body and mind of someone much older than me. I move slower, I’m weaker, I need more sleep, I tire easily, I forget things, I have this tremor, I weave when I walk, I have to hold on really tight when traversing stairs, I stumble, rarely, I fall.
One of my greatest loves in life continues to be hiking. I remember telling the physical therapists at the recovery hospital in Jan 02 that this was my goal. For the next month, and later as an outpatient, they worked on getting me out of a wheelchair and back on my feet on uneven ground. Months and years of baby steps have begun to pay off. I can now hike some unaided. Over rougher trails I need walking poles or at least a stick. Around obstacles, up and down steep hills and where the footing requires good balance, I need the helping hands of one or two companions. Given that, I seem to be able to hike in otherwise completely inaccessible places.
This August was a pinnacle of that experience for me. I traveled with friends to a remote wilderness in north central Arizona. There I was one of six participants on a vision quest with a 4-day solo. On a practical level, I could not do it – the terrain was too rugged, the walk-in basecamp too far, the challenge of fasting too demanding. If I had tried to do it alone and in the same way as someone who is not differently-abled, then it would have proved impossible. Instead I was the centerpiece of a 3-person caravan for the hikes down and back out. We were a sight to behold. Elizabeth led and her husband Jim walked behind me. They held each end of a stout but lightweight staff (an infamous Obi-Jim). I grasped the stick like a handrail on one side and clutched a hiking pole in the other hand. Slowly, very slowly, we switch-backed down a steep, rocky trail, resting often and debating our options with each new major obstacle. Once we made it to the canyon floor, we still had to traverse a quarter mile up the creek cross-country, wading in and out of the stream, crawling over boulders and across slippery rockbeds. It took us 1.5 hours to go a little over a mile!
With Elizabeth’s help, I found a shallow cave to call home for a few days. Others brought in my gear. I made arrangements to have someone check on me twice a day. I brought 2 oz energy bars, each one my daily meal with my morning medication. Sitting alone, deep in the narrow canyon, I thought about what life has brought me, what I have and what I am missing. I am blessed with so many good friends, kind and generous souls who help me, challenge and encourage me. I attribute much of my growth and recovery to their love and support. I felt my loneliness for a partner there very deeply. I have been single for a number of years now and I want to be part of a family, to have not only great friends, but also someone to love intimately and to accompany through life. I grieved for my losses while I was there and I marveled at my incredible good fortune to have come so close to death and then to have been able to return to life. It is in some profound ways quite different from my life pre-stroke, and in other ways I am the same person. There in the forest, surrounded by green lushness (it was monsoon season), I felt as though I had descended into the navel of Mother Earth. Once again I could clearly see that my path is now her path. I will not be Netkeeper alone, or ever be completely alone again – the grandmother spirits that enliven the earth are a part of me and I am one of them.
Returning to this more mundane world, I struggle to hold on to the insights and clarity of the quest. This I know to be another part of the experience. There are innumerable distractions that would lure me from my path. So, like the vulnerable human I am, I continue to find myself drawn this way and that. On long walks and with good friends I remember who I am.
Thank you for being a vital part of my life during these past three years. I would not be where I am or who I am today without such wonderful friends and family.
With much love and gratitude … Scout
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