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. Ouryoung daughter, along with all the children, was invited up to the altar totalk about Bhristmas. Long story made short the kids were asked about Christmaslights. When Megan offered purple, the minister corrected her pointing out thereis no such thing as purple Christmas tree lights.

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

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

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

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

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

Caregivingly Yours, Patrick Leer