Finding the new edges

I used to think ‘What can’t I do?’ Now I think ‘What can I do?’.

Living with impaired movement and a sensitised central nervous system means that the shape of my daily life has changed. No longer being able to count on my body being reliable, I am having to learn what signals my body gives me before I go wobbly/ shaky/jerky.

I’m learning a little more each day about where the edges are as I nudge them.

So far I’ve recognised that:

  • my eyes flicker before I lose control of movement, a clear warning to observant companions
  • uncontrollable shaking tells me to stop and rest or at least sit down if I can get to a chair, that I’m overloaded
  • a feeling of silver sprinkles running up my spine tells me that I’m about to lose motor control of my legs when I’m out walking
  • if I start walking like a rusty tin man, that my central nervous system is agitated and it’s time to back off
  • long social interactions especially discussing difficult subjects cause me to twitch (myoclonic jerks of my trunk) quickly, so to keep these conversations short and sweet
  • getting the feeling that I need to lie down NOW….like I need to ‘go to ground’ is a sure sign that I need to get as close as I can to the floor as I’m near the edge of losing control of movement
  • my voice changing to dysarthric  speech, sounding like I’m an expressionless computer-generated recording warns me of disturbance

As frustrating as it can be to live in a world of decisive boundaries, I am in the slow process of learning to respect the edges before I hit them.

My own stubbornness usually pushes me on the achieve my goal. Like any good Type-A personality, I have learned over time to ignore the press of the boundary against my flesh and my mind. I used to enjoy the feeling of pushing my body into new realms. It felt good to know I was strengthening my body as I pushed past the edge. My mind also loved the feeling of challenge, imagining a new matrix of neural networks forming as I discovered new things and integrated them into my understanding of the world.

Now it seems I must find a less intense, a decidedly smaller way of being, of living safely within the boundaries and healing.

I hope one day I will understand the meaning of this part of my journey and delight in the things I have learned. For now I grieve the loss of ‘the thrill of the stretch’ and the chase to be more, learn more and contribute more.


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