Missing The Mark

I have this image of myself as being transparent [not in the Netflix movie “Trans-parent” definition]. This disease is helping me find out that I am much more hidden than I would like.

When I had Lyme disease it was a specific diagnosis with a specific, though terrible, therapy. After 30 years of suffering with Lyme, it was finally properly diagnosed and treated. It left me with many lingering problems some of which maybe created my current disease.

The “maybe” is my problem. We know I have some current severe disease, but the doctors can’t agree, yet, on a diagnosis. This creates a situation where I don’t even know how to talk about this with myself. So I don’t talk about it with others.

This makes me significantly less than transparent talking about one of the major factors in my current life. When friends and family ask me how I’m doing, I answer vaguely. Typical responses from me are “Moderate,” or if I’m doing slightly better “Okay” or “So-so.”

My self-image says that I should be letting people in on how difficult this disease is for me, in a way that doesn’t ask for sympathy, just understanding. I don’t know how to do this, my only idea so far has been this blog (actually it was my wife’s idea).

She and I have developed a system that helps communicate what’s going on with me. There are three scales:

  1. Nausea – “None,” “moderate,” and “I can’t even think about food.”
  2. Pain – On a scale of 0 to 10, zero being no pain and 10 is passing out from pain.
  3. Life force – On a scale from 0 to 10, zero being “I’m dying now,” to 10 “I’m strong and vital.”

This allows me to share with her some how I’m doing without my having to be fully involved with the ills of my body. The issue of being fully involved  in my body is that a) it takes a lot of time to inventory my various parts, and  b) that fully noticing the pain, nausea, lack of air, etc. is really not fun.

Most of my time I spend slightly removed from my body. I know many reasons why this adaptation is not ideal, but it allows me to keep going while still really enjoying life.

I hope this post helps you understand how I’m doing, and in the bigger context helps you empathize more with yourself and others who are suffering.

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2 thoughts on “Missing The Mark”

  1. Rob, my heart goes out to you.

    I can certainly understand the “floating”, the need to be separate from your body which appears to be under constant attack. Blame you? Who can blame you for hiding from the pain? Not the person who bit her doctor for the audacity of wanting to give her a shot!

    I close my eyes and find myself within a chamber deep within a cave. Gaia wraps her arms around the cave and keeps me warm and protected. Water drips from the ceiling and down the sides of the cave, collecting in a dark pool in the center of the room. The cave echoes with the sound of dripping water, of life suspended and energy collected. The walls glow gently with bio-luminescence and the ceiling glimmers like stars. Within that cave, within that pool, I stand collecting that which is mine, that which has been granted to me as my portion; the energy of the universe, the energy of life. I cup my hands and take a sip of the water in which I stand, then reach out to offer it to you.

    Rob, may that which you have taught to me help you with healing. I share my bounty with you.

  2. Thank you for inviting me to witness your journey here–I agree with Carolyn that this is a valuable way to keep people in the loop, as they choose.

    I think the three-factor scale is an excellent idea. Though for obvious reasons a diagnosis would be valuable, the reality is that you have to live with whatever is going on…and managing the day-to-day of that exists whether you have a diagnosis or not. You’ve found a good tool to inform, without having to engage more than you want to. Those types of scales can work really well for emotional/psychological states, too–I used something similar when I was in the hardest part of learning to manage complex PTSD (though my scales were more along the lines of 1= I never want to talk to anyone again, 10=I can have coffee with you for an hour).