No Voice


This year so far has really been shaped by events that give cause to think about autonomy and communication.

2018 began with a sharp increase in the number of weird, seizure-like episodes, which have been happening on and off since the summer of 2015. They started 6 months after my legs first went wonky and my walking began to change. However instead of affecting my legs, these episodes affected the left side of my head, face and neck causing weird spasms, pain and reduced cognitive functioning and awareness.

I had about 18-20 days of weird episodes from 2015 – end of 2017, and they were mostly pretty mild; however in the first six months of this year I’ve had over 55 days when I’ve had these episodes, and they are quite intense.

They cause spasms in my face, and jaw, and can spread throughout my body. They always affect my speech, and sometimes my consciousness too. The speech part is one of the most challenging, as it can last for some time; from several minutes to a few hours or more, also they cause my face, neck and body to move and make strange smacking and sucking noises.

It’s hugely embarrassing and very stressful when it happens in public. It’s also dangerous, as I live alone, so most of the episodes happen unnoticed. It also makes it hard to use my mobility scooter or go anyway un-escorted, in case I have an episode.

Life is getting smaller and smaller and more and more limited. Like being in an invisible prison. These were the main reasons for applying for Assisted Living off island. These episodes are very unpredictable and can be very disabling and Ironically because my health is so unpredictable, my application for Assisted Living has been declined!

The Doctors tell me its not epilepsy causing the episodes which is a huge relief but they cant tell me exactly what they are or how to effectively treat them, so for now all I can do is learn to live with the fact that sometimes my body won’t walk or talk or move the way I want it to and manage as best I can.

So, what do you do when you lose the ability to talk, walk and control your body? How do you communicate when your primary means for doing so is disabled?

There have been too many times this year when this has happened, so naturally I’m interested in ways to manage this challenge. One of the obvious things is how much these episodes are affected by stress, and the impact is clear. As with many illnesses, and diseases, stress is often the catalyst. It surely is in my case!

What to do to manage stress better, and try to calm down an inflamed central nervous system? Effective natural remedies for me include medicinal cannabis which both relaxes me and calms my nerves; smoking isn’t ideal, so I use it topically and in edibles most of the time. Other calming herbs that work well for me include damiana, passion-flower, and mullein (which is good for the lungs too).

Meditation is also very helpful, although not always easy to practice, especially when the physical stresses and trauma gets in the way, invariably that is the time one needs it most.

I’m interested to know if others with Myalgic Encehalomyelitis/Chronic Fatigue Syndrome or Pineal Region lesions have similar episodes, and if so what works for you?