Saturday, March 13, 2010

Be aware! Be very aware!!!

This past week has been MS Awareness Week.  I am pleased that the well-run and most helpful National Multiple Sclerosis Society (NMSS) conducts this week each year in an attempt to spread the word about this dreadful disease.

(BTW - there are several MS organizations out there but only the NMSS is legitimate.  The others are poorly run and spend little of the money that is raised on research or client assistance.  The NMSS is consistently rated as an excellent charity.  So give generously but be sure you give to NMSS)

Multiple Sclerosis is the most common degenerative neurological disease in the US and Western Europe.  MS primarily strikes people between the ages of 15 and 55 - the so-called prime of life and after 10 years with the disease, half of all victims are severely disabled.  I was diagnosed in 1983 at the age of  29 although now that I understand the symptoms I know I was sick in high school. 

After cheering at a football game, my feet would feel like they were on fire.  Mom would rub and rub trying to relieve the discomfort.  Once, during a game I just spaced out completely.  I didn’t have the energy to jump up and down, couldn’t remember the words to the cheers and couldn’t concentrate enough to even know what was going on in the game.  I just stood there sort of staring into space.  I didn’t even realize anything was wrong.  The following week the Pep Club gave me hell, all but calling for the forfeit of my varsity cheerleading letter because I wasn’t ‘engaged” in the game.  On an intellectual level I know it is silly but I still harbor an intense level of anger about that incident that  eats at me.  I want to go up to the major critics and yell, “ I have MS and you were a jerk! Apologize, dammit!’

Multiple Sclerosis means “many scars”.  Perhaps this is one of them.

Actually, the disease is characterized by multiple lesions on the brain, spinal cord or nerves.  The lesions heal and are replaced by scar tissue, hence the name, and the affected nerve function is severely impaired or stops completely.  Symptoms range from numbness and tingling to complete loss of use of limbs, loss of bladder control, vision impairment or even loss, loss of cognitive function, fatigue - a loss of energy so severe that it has to be experienced to be understood.  Loss, loss, loss.  It is all about loss.

For me it has involved loss of my ability to run outside and play with my boys when they were little, loss of vision (once completely in my left eye), loss of bladder control, loss of the joy of sitting in the hot sun (heat causes an increase in symptoms which for me means it gets really really hard to walk) loss of  the strength required to get the milk jug out of the frig, loss of the ability to process multiple stimuli which severely limits my ability to drive, loss of a job I loved, loss of the ability to concentrate, loss of the ability to be a 10 in bed, loss of cognitive function that was once good enough to get me classified, along with a bunch of wonderful NC friends, as “gifted and/or talented” and to get me admitted to MENSA, loss of access to the rolodex of names and words that used to be easily available in my brain, loss of energy to the extent that I can plan only one event a day and then hope that I will not be too fatigued to do it, loss of emotional control and EXTREME LOSS OF PATIENCE WITH THIS RIDICULOUS UNPREDICTABLE DISEASE.


  1. Cindy - I didn't even know you had MS until way after we "met." You always come across as composed, intelligent, vibrant, fun-loving and unafraid and I have never been aware of your losses until you have chosen to share them so bravely.

  2. I so know what you mean. I have had fibromyalgia through school with RA now. I can barely play with my 3 yr old and it really hurts on the inside...