Thankfullness and My Catatonic Life

Catatonia

An abnormal condition variously characterized by stupor, stereotypy, mania, and either rigidity or extreme flexibility of the limbs. It is most often associated with schizophrenia.


[New Latin, from German Katatonie, from Greek katatonos, ‌stretching tight‌, from katateinein, ‌to stretch tight‌ : kata-, ‌intensive pref.‌; see ‌ cata-‌ + teinein, ‌to stretch‌; see ten- in Indo-European roots.]


The American Heritage® Dictionary of the English Language, Fourth Edition

One of the more interesting effects of Adiposis Dolorosa on my body is that from time to time I become catatonic for short periods of time.

(It took me about 2 minutes to write that sentence because right after the word “I”, my body shut down for about a minute.)

Anyone who has used a computer knows that from time to time the computer becomes catatonic, unresponsive to keyboard or mouse commands. Sometimes, if you wait it recovers on its own, other times you reboot the computer.  My catatonia is similar to this. It can strike at any time whether I am standing, sitting or lying down. Sometimes I will close my eyes and my head will droop as if my neck muscles went limp.  Other times, my body will become rigid even flailing about as is common in seizures.  If I am off-balance when it occurs I have been known to fall to the floor. My autonomous nervous system is at least partially functional when it happens because mostly I do not fall as happens in people with Grand Mal seizures when they become unconscious.

According to Web M.D. my seizures may be best described as partial simple motor seizures, affecting only a small portion of the brain where awareness is retained. When they occur, it takes a few moments for me to realize what is happening. Inside my mind there is a dialogue going on but it is a dreamlike state.

 “What is happening… why am I? Oh it’s one of those seizures again… C’mon… wake up.  Just open your eyes and move.  I hope I don’t fall over. Wake up…”

(Then my mind drifts off into the twilight zone… as if I were in a dream.)

After a while (any where from a few seconds to as long as an hour) my eyes blink a few times and I’m back.

These catatonic states occur nearly every day. While writing this post I have had two of them. If you were with me when I had one of these you might not even notice it unless you tried to talk to me during the event. If I’m lying in my recliner watching TV you wouldn’t know, but I would come to wondering what happened during the last few minutes of the TV show.

There are other indications of brain injury from Adiposis Dolorosa. I developed double vision in January 2013 that has continued unabated to this day.  Later I discovered that I couldn’t follow TV shows without the closed captions on. When my hearing was checked they found that I had moderate to severe hearing loss. I get involuntary muscle movements, jerking or spasms, (known as Myoclonic seizures) and my hands often twist into claws.

hand

Some people have suggested that perhaps these symptoms are side-effects of the medications I take. This is certainly a possibility, but given the fact that these catatonic episodes and their frequency has remained constant over the last couple of years even though I have been on and off a number of different medications in that time, I suspect that medications are not the cause.

Once again, my current doctor has suggested that I be evaluated by a Neurologist, perhaps at Stanford University. I hesitate to do this because I have been evaluated a number of times and nothing has been discovered. This is not surprising because the effects of Adiposis Dolorosa on the brain and nervous system are so poorly understood.

In the meantime, I’ve learned to live with my condition. Nobody has demanded that I surrender my driver’s license but I suspect that it is only a matter of time. Presently, I have a caregiver who drives me most places and my daughter drives me as well. Losing my independence is a difficult thing, but there are good side-effects to it as I am rarely alone now which gives me time to enjoy the company of others.

Some people wonder, if I am so disabled, how can I write books, blog posts and work on a Masters program at the same time?  The answer is that I’ve learned to work in between the bouts of pain and catatonia. This gives me much time for reflection and study.

I’ve also learned that there is good in everything that happens to me if I am willing to find it. It is so easy to focus on the bad, the wrong, the painful, but scripture calls us to think about better things. To cultivate a life of thankfulness. Those who are not sick are busy and preoccupied with the mundane things of life so they may never learn to do this. Sickness has been my tutor, teaching me to reflect thoroughly and to search out the deep things of life and so I’ve learned that I can indeed be thankful in all things, even catatonia.

4 comments

  1. I leave a response when I especially enjoy a post on a site or I have something to contribute to the discussion. Usually it is caused by the sincerness communicated in the article I read.
    And on this post Thankfullness and My Catatonic Life
    | Chronicles of Ron. I was actually moved enough to write a thought 😉 I do
    have a couple of questions for you if it’s okay.
    Could it be only me or does it look like like a few of the responses appear like left by brain dead visitors?
    😛 And, if you are posting on other online social sites, I’d like to follow
    anything fresh you have to post. Could you list every one
    of all your social sites like your twitter feed, Facebook page or linkedin profile?

  2. Many of us take our health for granted, preoccupied with our hectic life… Thank you for pointing this out to me. I wish you strength especially during the tough situations. Keep faith!

  3. Hi Ron! I too have dercum’s.As a male i to have have episodes of this kind.Today at the movies watching American sniper my eyes went into the back of my head and almost like a pass out state.My wife shook me and i kinda looked at her with a far away look.When i write blogs i just blank.From my studies of dercum’s and being my own advocate dercum’s has to do with family genes and trama. I’ve been into 2 major car accidents where my head smashed the windshield.I have to say that might have something to do with it. I do understand that feeling and fight the medical community on a daily basis. I’ve spent every penny that i ever made finding out that i had Dercum’s and now i’m trying to just to have a little quality of life.Almost impossible in my situation.I never let it get my down and will always fight the fight to pay it forward to those who still have a chance.Without a cure i know my destiny but im ok with it.

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