Category Archives: wellville

Optimistic for a Game Change

I find myself stuck between hope and optimism. My need for either comes from a sense things can not continue indefinitely along my current path. Pain grows and periods of blindness increase in frequency. I know much of this is a by product of stress. Thankfully, I have some reasons for optimism and hope. When one can not win a game, and the playing of it gives only negative results, perhaps it is time to change the game. In my case, the potential changes give hope for short term betterment and optimism for long term changes.

For me, the difference in the two terms, hope and optimism, lays in one’s expectations. Optimism implies an expectation of a positive outcome or set of outcomes. Hope is the ability to conceive of and imagine a good outcome after we have set aside all of our expectations for good or ill.

Hope remains independent of our logic. At times, it may be buttressed by our optimism and logical expectations. Yet at other times, it may be the last defense standing alone in the path of the hurricane of our existence which seems to blow away all that upon which we have built our lives.

Some days, we must all hide behind our hope, taking shelter until the sun shines once more so that we may begin to build anew.

Hope for the short term:

MS certainly creates stress as my body shuts down at work and home. At work, I manage a team whose membership has changed suddenly. I have all new staff, and I have to hope they are as good and competent as they seem because our schedule remains unchanged. I have to hope I can move on from this job after I set it up to continue. I need to change this game because my ability to enjoy the process has left with the staff I picked and trained.

At home, I hope my oldest daughter learns to accept her limited diet and finds a way to thrive emotionally. Last week, she accused us of trying to kill her by not letting her eat (by mouth). I can only hope because right now, in the midst of it, I can not see a way out. Yet we will continue on as best we can, hoping for peace.

Optimism for the long term:

There was an article in Nature last week showing for the first time how the brain is connected to our immune system. It mapped out the blood brain barrier. While this is not in itself a cure for MS or Alzheimers, it does put the brain back in play as a normal vascular system where blockages can be seen and predicted. CCSVI was a procedure started by a vascular surgeon in Italy who believed his wife’s MS was a vascular problem. He put a stent in her brain to improve blood flow. Since then, thousands of MS patients have had the same procedure, despite not knowing if it solved a real problem in our brains. For some it helped, and other it did not. Studies seemed to show MS patients were no more likely to have a blockage than a healthy person. Now, with this study, we may better be able to look at the brain’s blood flow and understand the system. Suddenly, we may have changed the brain from a complex system to merely a complicated one. A procedure like CCSVI may be better targeted.
http://medicalxpress.com/news/2015-06-link-brain-immune.html

This discovery has the potential to be a game changer for our understanding of how the brain works.

On the home front, our game change is in name only. This week, we adopted K who has been with us for years. It may be in name only, but the feel good news comes at a most welcome time.

Our family officially grows to match what we have known and and lived for years.  We are now officially a nuclear family of 5.
Our family officially grows to match what we have known and and lived for years. We are now officially a nuclear family of 5.

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The Chasm Between Sickville and Wellville Bridged by Imperfect Language

I wonder what K makes of the blur of images as she swings from a tree swing at a Memorial Day pig roast.
I wonder what K makes of the blur of images as she swings from a tree swing at a Memorial Day pig roast.

We all think we understand and are speaking the same language, but I suspect words only loosely convey experience. What’s more, words seem less likely to maintain their conductivity of meaning when used to describe experiences that one or both sides have not experienced. I think this chasm of experience is part of what leads to the perceptions I see expressed on MS message boards between the lands of Wellville and the sometimes wasteland of Sickville. I encounter this gulf every time I try to explain the blindness I have experienced most often of late. We all think we know what “blind” means. Even at the disability conference at my work, they had an attempt to train people with sight what it is like to be blind. They blind folded us and walked us from the cafeteria down a hall and gave us a cane. We could use our ears and the cane to tell when hallway opened into the cafeteria. I have thought of this as traditional blindness ever since, but I think it misses other types of sensory interruptions which lead to effective blindness.

My first attempt to describe my sight interruption was years ago when I was trying to relate some of the humor that I find necessary to live with MS:

This is from my first Christmas with MS where I got together three presents to wrap, tape and paper.

First present: put present down, cut paper, fold paper, tape – tada! One down two to go.
Second present: put present down, cut paper, fold paper, ummmm where is the tape? I have not stood up. It must be within arms reach.

Why the heck can’t I remember where I put the tape or see it…a 5 min curse fest ensues until boredom with repeating the same curses allows me to realize there was more tape. So I go and grab another roll to finish. Tada! Two down.

Third present: put present down, cut paper, fold paper, ummmm where is the tape? Seriously? I cannot remember where the heck I put it. Thankfully, this time boredom hits faster so after only 2 minutes I remember there was more tape. Tada all done.

I saw the tape neatly stacked one on top of the other only the next morning, but for the night I just had a block. I could not see the tape.

http://thelifewelllived.net/2012/03/01/ms-humor/

This inability to recognize what my eyes saw as tape rendered me blind to it. I could still see colors and movement. I have little doubt I would have been able to read an eye chart as well as ever, but I could not “see” the tape. Sadly, this disturbance seems ever more common of late. My wife has pretty much given up on sending me to go find something that I know only by her description. “Go get the razor lubricant from under the bathroom sink” was the latest frustration. Looking under the sink, I saw the extra razors, shaving cream, cleaning supplies, etc. I could not find for what she sent me, and I suspect thirty minutes would not have helped. When I encounter these episodes, the only way I have found to work around them is systematic search involving physically moving everything until I am holding the object of my search. It is a method that works but takes a long time, especially if one counts cleanup time. The irony is I believe our youngest, K, has a brain doing the opposite of mine.

Where my mind takes in the stimuli but fails to interpret it properly, hers seems to do an exceptional job interpreting the limited stimuli her eyes receive. Where I cannot find something in a drawer, she can pick out classmates from photos, see the ground to navigate running, and even find toys amongst rubble of thrown objects in a basement. Her mind has adapted well to the point where people who do not know us cannot believe she has problems seeing. Her blindness is probably matched more closely by the cafeteria/hall demonstration at my work, but her ability to interpret limited sensory inputs gives her a huge edge over our bumbling with a cane.

Therefore, as we attempt to describe our symptoms, whether it is recognition issues, traditional blindness, headaches, spasticity, or any of a myriad of other MS symptoms we should realize the problems with the imprecise language we have at our disposal. Often what we think is obvious may miss the tiny bit of information which would convey truly our experiences, and others who have not gone through the same thing may find themselves with only an idea formed watching from afar, across the chasm between Sickville and Wellville.

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