Hello… where to begin this story with essential tremor. Let me start by giving a short bio. My birth name was Sarah Brock, and then changed in July 2009 to Anna (Enya) Brocein. Born on the Gulf Coast of Texas in a small coastal town in 1962. I had three much older siblings. My mother was a homemaker and my father worked as an engineer at Dow Chemical. Life was an interesting adventure.
Theories are rife as to when the tremors first began. Writing and any fine motor skills activity was a frustrating nightmare for me. Especially as a child and sporadically through my 20’s and 30’s. Then, getting progressively worse in my late 50’s. Apparently, there were some other factors, too, such as Functional Neurological Disorder, Neurocardiogenic Syncope, CPTSD, and CKD, among others.
The first tremors actually occurred after a horse accident in Big Bend National Park in Texas. I had ridden horses before and wasn’t too concerned. But on the way back to the stable, the saddle seemed loose and not tight on the horse. I was going to slow the horse, step down, fix the issue, get back on and continue down to the stable. But the ranch hand had other ideas. He slapped the horse on the rump, as I had just gotten my right leg over and the left foot was out of the stirrup. My right foot goes into the left stirrup and the horse grabs the bit and takes off for home. I’m bouncing along by the right foot. After a few minutes that seemed like a lot longer, the foot finally came free. I ended out with a severely dislocated left elbow and a “Whoa Nellie! What a ride!” kind of head rush. I didn’t know about concussions at 15 years of age, but I do now. I definitely had at least one and a damaged spinal column. But I was young. The doctors put a cast on me and removed a twig out from under the skin on top of my left shoulder blade. It was a year after this that the tremors started physically showing. Whether or not there was a predisposition for them, that is a theory only.
There have been other accidents, blackouts with falls, calcium disks, medications imbalances, holistic abuse and trauma. I guess you could say that I haven’t exactly taken very good care of this body I have been given. But I am not the only one to be accountable, others have impacted the journey, too, by their actions. So, I try to just keep to the present moment, knowing the shadow work is there.
What does this dysfunction looks like for me? Hmmm… I think it is best to say that the usual suspects are there. A sense of lack of strength, and overactive extremities, i.e. hands, mostly, but sometimes the whole upper body becomes sympathetic and at the worst, the entire body joins the fun. It depends. The FND, the NCS, along with the ET, definitely are the bane of the existence. Typing on a keyboard is a no go. Typing one finger style on the iPad or phone is better, but sometimes the brain wants to type something totally different than the fingers. Holding a book, a lightweight letter, music sheet, eating utensils, or a glass without a lid…yikes! They might as well take flight as birds.
The specialist physician who manages my case, has flat out told me, “I don’t see this as a disability.” He only recognizes medications and DBM. The body is hypersensitive to medications and the kidneys and liver have taken a beating from the medications that I take already. DBM is out of the question. I have been seeing on LinkedIn, some non-invasive adaptive technologies and innovations for those with movement disorders and tremors. But the specialist won’t listen. OMG and What The Blue Blazes!!! Obviously, he hasn’t had to live with this for the past 40 plus years or tried to describe it to lab techs while involuntarily shaking off the table! Also, I’ve experienced trying to explain it to employers and then getting so frustrated that I just don’t apply for positions.
I have a bachelor’s degree in education, non-certification, a master’s degree in management with a healthcare specialty, post baccalaureate work in occupational education/workforce and leadership studies, a diploma in travel and hospitality, and a past accreditation in medical administration billing and coding. I can’t do what I have been trained to do. Professionally, I have 15 years of administrative experience, especially in accounts receivable and data entry. My passion is in the creative arts, spirituality, integrated healthcare, student engagement and mentoring in student affairs at a university, advocacy. I just don’t know where I fit and am so scared about filling out an application. But Social Security Disability Benefits doesn’t cover all the expenses. I’m considering relocating so I could find a better way of living.
Being holistically challenged in the abilities arena is not easy. At times, I want to scream. But this arena has been a blessing, too in a strange sort of way. It has helped me to get to know me. The soul within all the human stuff. Spirituality, chanting, meditation, journaling on social media, reading, and listening have all been avenues to healing . . . to lessons and blessings. Listening to the chanting of Krishna Das and Nina Rao and Shyama Chapin, to hearing discussions by Ram Dass and Jack Kornfield, among others, have been life changing experiences.
I don’t know what is going to happen in the next moments. It gets scary. There isn’t biological familial connection or support. The support is from the spiritual community and the healthcare team. And sometimes it just doesn’t work. Sometimes it would be nice to have a strong shoulder to lean on, a hand to hold, an ear to listen, a loving heart and voice to sing with. The journey is so multidimensional and multilayered.
Hope this gives a bit of a glimpse into the journey that I’m walking.