Saturday, December 17, 2011

dreaming of a purple Christ…MS

Decades ago, maybe even the last time Patti ‘walked’ into a church, we had a Christmas tree lit with all purple lights. Our young daughter, along with all the children, was invited up to the altar to talk about Christmas. Long story made short the kids were asked about Christmas lights. When Megan offered purple, the minister corrected her pointing out there is no such thing as purple Christmas tree lights.

A harbinger of what she would face in school when teachers would mis-teach Multiple Sclerosis either working from out of date textbooks or sharing mild MS as an example.

It would not be until her senior year of high school that Megan actually had a teacher who personally knew what growing up living with severe MS was about. She, like Megan, had spent her youth with a Mom in a wheelchair dependent on others.

Lack of awareness by others is part of living with MS as a family, affecting not only the mysterious diagnosis but equally significantly the daily life of all family members.

Holidays are a good time for common denominator examples. ‘Normals’ put a tree in a stand and admire, while living with MS you discover you need to secure the Christmas tree as stable as a grab bar. Patti has pulled more than one tree down on herself while trying to be involved. For years I secured our conventional tree stand to a square of 3/4” (19 mm) thick plywood. Several years ago I simplified and bought a 30 lb (13.6 kg) steel stand with a leg span of almost 3’ (.9 m) made by Bowling Enterprises of Bear Lake, MI.
Being no longer able to stand, legally blind, failing eye hand coordination, and down to use of only her right arm - were you to overhear our ‘assisted’ decorating you might be surprised at the laughter of involvement.   

Purple is not only Patti’s favorite color but a combination of contradictions, hot red and cool blue. Perhaps not traditional Christmas but then again living with MS as a family we jumped that traditional track long ago.

Caregivingly Yours, Patrick Leer 

1 comment:

  1. I like the purple lights on the trees, very unique! However the tree gets decorated (assuming it stays upright) it is all good for continuing to make memories in a family where all our loved! Keep making those memories Patrick and Patti and Megan!

    (taking a bit of a blog break, Patrick; wishing you all a joyous Christmas season and day!)



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