Foggy Days

Days like today are traumatic.

Most of us who are over 40 have times when it’s difficult to remember or think clearly. But this is different.

Today, I am lost within my foggy mind. Today words get lost in the fog. Words like “refrigerator,” “door,” and “broom” just won’t appear when needed.

I’m also lost in space. In our little, temporary, home (all of 225 ft.²) I can’t seem to find where the door is or the refrigerator. There’s no panic like being lost in the woods. It’s just that nothing seems familiar, neither this cabin we’ve been living in for a year and half or my mind trying to find words in this brain I’ve been using (on and off) for the past 65 years.

This is the first time in the last six months or so that I’ve been lost in the fog. I don’t know what brings this on, nor what will make it go away.

I’d like to be able to say that writing this post is a stream of consciousness effort, but it’s not really. I really don’t have a stream of consciousness. That is, that there is no flow from one thought or one paragraph to another thought or paragraph.

Writing in any intelligible form is an immense effort to maintain a deep writing meditation. I imagine this will require a lot of editing, but I feel that it’s important to share what it’s like to have aphasia along with some other stuff. [“Aphasia is a condition that robs you of the ability to communicate. It can affect your ability to speak, write and understand language, both verbal and written.” Mayo Clinic]

On these foggy days it’s difficult, and sometimes impossible, to think things through:

When the peanut butter, jelly, and bread are on the table with a butter knife in my hand, what do I do next and where’s the butter knife?

With my wife asking me how were going to pay for snow tires for car, how do I add $400 and $500, and what’s a “snow tire,” and I know she was asking me a question but what was it?

My wife says “Hey Hon, there’s more carrots in the refrigerator that’s in your office.” [Yes, I share my office with a refrigerator, a pantry, a water heater, a washer and dryer, and the freezer.] But my mind freezes when she says the word “refrigerator.” I hear the word but I don’t know what it means and I can’t ask her because I can’t say the word, no matter how hard I try.

These are just three of the myriad of things that happened to me today in this foggy world.

I used to get very disturbed by losing my way in the world and in my thoughts. But that didn’t lead me anywhere near joy. So I searched, and thought, and prayed, and I found the blessing.

I’m a brilliant guy with a good heart. But viewing the world from this honored place is not where the majority of people live. Living in this fog has helped me realize how very special that other place is and how much I want to use those abilities, to be of service to others.

I guess I’m done because my mind is going into a deeper fog. I need to go lay down and take care of myself.

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.