“Some” Voices of Multiple Sclerosis

I read  a recent  edition of the New York Times blog column Well entitled Voices of Multiple Sclerosis.  My husband is my editor. He is the one who steers me past the articles that he know will torment me for days and to the ones that will intrigue and inspire. It’s easier now that we have made the “green” transition to e-reading. Instead of piles of folded papers cluttering our flat surfaces, emails accumulate in our virtual mailboxes with encouraging subjects such as “Keith thought you would be interested in this…”    Such was the case for Voices of MS. And while it sat in my “in” box for a bit, eventually I did read and in this case listen.
I was moved to write a letter to the columnist Tara Parker-Pope though I have yet to send it. So, I thought I would post it here and get some feedback from my readers.. especially those of you who have MS. (but not to out rule those who don’t!)
Ms. Parker-Pope,
Thank you for giving voice to some of the diverse individuals who live with Multiple Sclerosis. Watching and listening to their experiences brings out many reactions; personally and professionally.
As a person who has been living with MS for over two decades I connect with each of these stories, with an understanding that ranges from “I know what you mean” to “will this be me?”The latter of which is the approach/avoidance that I experience with everything I read or see about MS. I have met many people with MS over these 20+ years that echo this sentiment.
It’s hard to satisfy such a varied group of people. Any media outreach is obligated to represent. If the sampling doesn’t provide a person from each “walk” of life then someone is alienated. In doing so however, many people with MS who are fearful of their uncertain future are not interested in reading more. Though some want to know every possible outcome so that they can plan for what might happen, many don’t want to waste valuable energy worrying about something that may never occur. It’s counter productive on so many levels most significantly, managing each day do be the strongest one can be within their individual circumstances – emotionally and physically.
It is this reality that inspired me to become an educator that uses technology to create ideal learning environments for individuals who live with such an uncertain future. I have designed a web-learning approach that allows each person to customize what s/he wants to learn and how s/he wants to learn it.  Called MSSoftServe.com, it uses techniques supported by learning theory and preferences that can be set to reach each unique individual with MS.
This educational tool serves up information as the users want to absorb it – based on their own symptoms and concerns – without exposing them to information they are not looking for that replaces their desire to learn with fear and uncertainty. Or if your approach is more “rocky road” (“I want to know those worst case scenarios”), you can specify accordingly. Whatever the situation, this new way to learn about health on the web is self-directed and ultimately empowering.
(MS SoftServe is a non-profit organization currently seeking grants to fund its development…blah blah blah.)
I just left off there. I’ll obviously revisit this before I send it to her. Maybe a more refined ending! 🙂
In the mean time… I welcome your thoughts.

Pixel Bound

This has been an unusual couple of weeks. I have felt the need to blog so many times, and have been unable to get here. Some days I find myself crafting the opening phrases and titles of entries that never find their way to the pixel.  I’m starting to recognize them as a neurological archive of drafts. Will I ever get back to them or will they languish in word purgatory? I wonder. It also gets me thinking about my creative process. I’ve been learning a lot about how I create,  edit, and ponder my life experience. It has been quite profound. The power of my own words has surprised me as I use them to console, inspire, and comfort me.  I hadn’t realized when I began this blog in 2007 not only how healing it would be, but also its potential as  a creative vault that when opened has great impact on my today.  It amazes me in different ways continuously.

Yesterday I made a bad decision. Although I was hesitant to admit it, I have been relatively dizzy-free for 3 weeks. It happened gradually, with small set backs caused by certain movements. This past week however, I’ve been able to move in ways that had been previously off limits.  Most notably, I could look up without being left in an unstable place. I have even been increasingly comfortable telling people of these improvements,though it has taken me 15 days to feel truly confident about doing so.

I have to admit too, that I began to slide off the “MS Recovery” style diet a few months ago. While it continues to inform my eating decisions, the rigid requirements of doing without certain things – is no longer in play.  I quickly recognized that this wasn’t having  impact on my dizziness and though I know the change of eating is a long term investment for MS…  and overall health improvement.. however, the thing that kept me on it was the hope that it would impact my dizziness. Somehow when that didn’t pay off after 5 months I gave in to temptation.

This is disappointing to me on some levels. I like how I feel when I’m eating by those rules. I have less temptations and compulsions toward feel good food. (like chocolate!) But along with those compulsions comes food that feels happy… and while I know that in itself isn’t the best way to eat… I missed it.

Okay… back to my egregious error. I was very excited yesterday to actually do a load of laundry… take it out of the dryer.. immediate fold it and hang it up so it doesn’t all sit in a wrinkly mess only to be dried again… and again.  It’s those little things.  Anyway… I was unloading.. and folding and hanging on a rod in the basement over my head. With some repeats of this motion I found that I was feeling nausea. But… I pushed ahead figuring I would be done shortly. Nearing the end, I was able to hang the clothing up without actually looking up to make sure the hanger was properly placed. Ah those little skills we accumulate!  Unfortunately, as I completed the task I realized I went a bit too far.

And that dizziness still lingers 24 hours later. That is just wrong! I was just folding some laundry! If my husband didn’t already do 80% of the tasks our life requires, I would pass this off to him. But the reality is I get pleasure from the tasks that are small and satisfying. Ones that don’t require edits and rebooting, and analysis. Very succinct, a start middle end. Even unloading the dishwasher brings a certain amount of satisfaction in my day… balancing the complicated tasks with the quick and should be easy ones.   The good news is that I am fully capable of sitting at my computer, writing in my blog and submitting grant applications on behalf of MS SoftServe.

Last week I met a faculty member at NYU who has had MS for 35 years. He has his challenges, as we all do.. but he offered some words that help him carry on…  “At least I wasn’t born in Sarijevo”.  I guess that speaks to me as I try to keep everything in perspective.

At least I was born at a time that traverses the digital age.

So much to chew on there.