Monday, October 25, 2010

The Many Variations of MS from the Person Living With It! ~~VOAT~~ Variation On A Theme!

Please join me on Monday, October 25th at 7pm for the next episode of MSLOL-Radio! We are so excited about a brand new series that will start with this show. (Hey, It’s the second episode – gotta keep things fresh!) ;) It’s called VOAT: “jane doe”.  Each of us has our own unique version of MS and this makes us a Variation On A Theme. While we have some common ground, many of us never experience what others do. 

This ongoing series will highlight one unique thread that is part of the tapestry that is MS.  I’m hoping that in getting to know each other, we can expand our understanding of this disease. We will hear about our guest’s version of MS, her (his) day-to-day experience and those tried and true coping mechanisms.* I have little doubt that no matter what version of MS you are living with, there will be some part of these stories that you will relate to.

This riveting interview will take place after my introduction, a “food for thought” moment and a progress report of MS SoftServe- the first site that will be customized for our unique needs. And that’s not all! (For $19.99 you will also get...) ;) We will then “Speak to the Peeps!” So call in and share your thoughts; to “represent” your version of this insidious disease!

*If you are newly diagnosed or just working to avoid overwhelming information that may having nothing to do with your course, it’s understood. I plan to introduce the rough detail of what is to be discussed before the segment starts. That way you can opt out at any point.

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Sunday, October 24, 2010

Dependence Day

For the past 20 years, the 4th of July has been all about dependence for me. While the nation celebrates its independence in the stifling heat of July, I’m inside. Like so many who live with Multiple Sclerosis– heat is my dictator, my oppressor, my King of England. And while the summer holds many days that are challenging, the irony of summer’s opening holiday leaving me reliant is a wound that never quite heals. I know that whatever the invitation is, chances are good that it won’t be an option for me. So I sit in my air-conditioned room searching for alternatives on this day of independence, working hard to accept the parameters of my dependence on the arm or the stick that supports me through life.
For the past few years I have found the emotional fortitude to watch my daughter in the town parade. Sitting on the chairs set up by my back-door neighbor, I try not to be envious as I look at the ease of movement seen in everyone around me. Distracted by the parade, I wait patiently for Madeline and Keith to pass by as part of the group they are walking with. In spite of the fact that I’m sitting as one of many who have come to watch the parade, I feel useless. I can’t help but to imagine being there with Madeline as Keith has in recent years.

These can’t-do events were easy to avoid when Keith and I were “single” in our marriage. We made plans to fit with in the parameters of our (my) needs as a preference rather than a limitation. Two adults can make these choices and not be questioned. Sitting in a dark movie theater as opposed to the outside activities in July is not unreasonable when desired by two. But all that changed when Madeline came into our lives. What began as fear of how I would care for my infant grew into not playing in the backyard on the hottest days of the summer and not going on the treks through the local reservation to pick raspberries.
As invitations came that were beyond my abilities, I either “wallflowered” or bowed out and allowed Keith to represent. But as Madeline has grown into the precocious almost-8-year-old she is, my absence stings on new levels. Now she assumes I won’t be joining in and for me, that realization is a bitter pill. So now I search for circumstances that defy her assumption while also honoring my reality.
Who would have thought that my first effort would be on the 4th of July. The day that repeatedly blacklisted me from engagement. Maybe it was an affirmation from the powers that be that it only reached 79 degrees this year on that day or that the delivery came just in time to seal my participation. Arriving on July 3rd at 5pm fully charged and ready to escort me in Montclair’s Independence Day parade- I had no way out. I told myself, that if it came prior to the 4th, I would do it. I made a public verbal commitment, knowing I would not have the option to find excuses. I sometimes have to trap myself that way… my rational brain forcing my emotional brain out into the fray, like a kindergarten-er on her first day of school. By parading myself past the entire town while struggling to accept this variation of me, I am forced to do exactly that. I will be playing the role of someone who is at ease, in spite of the real character behind the continuous smiles and waves of a parade. It’s all or nothing… that’s how I roll – so to say :) .
Despite my efforts to evade this inconvenient truth, I finally forced myself through the red-tape that helped me to avoid this acquisition for years. Forging ahead in spite of an intense internal resistance… I am now allowing myself to use that which I can barely utter for the scenarios that were beyond my reach, my step. Showing my daughter that I can be there representing with a cool ride and a big smile. Pretending its okay…even before it is… I know I’ll get there. And while my forced physical presence could only happen by making and losing/winning bets with myself, I will continue to find ways to accept the me who needs a device for mobility… to be a participant and not a sideliner. And Madeline will get the message, without even knowing it.

Multiple Sclerosis Life of Learning

Multiple Sclerosis Life of Learning