My Ode To Raising Awareness About MS
Last updated: December 2023
It's important to raise awareness about MS, not just in Awareness Month in March, but beyond. It helps share what MS is and its effects on the person with the disease, as well as on loved ones and caregivers. I want to contribute my voice, as I have lived with MS going on 16 years. This is about me.. my ode to raising awareness about MS.
From my early days to my MS diagnosis
In 1977, I was a seven-year-old 2nd grader. Very 'little girl' happy with not too many cares in my 'little girl happy' world.
I turned 17 in 1987. Concerns centered around the joy of driving, hanging out with friends, the anticipation of graduating the following year, and heading off to college. Life was good with the exception of the tape coming out of my favorite cassette or the consequences of an occasional missed curfew or incomplete chore.
By 1997, I was the proud mother of a rather precocious five-year-old little boy! My focus rested firmly on working, caring for my little family and our home, and living my 'grown-up' life.
It's cliche, but what a difference ten years can make. In 2007, I was 37 years old with a 14 going on 15-year-old son - and a three going on four-year-old little girl. And a spanking brand new diagnosis of MS! *Mic drop*
Watching my independence decline
By 2017, I was medically retired, no longer driving much, and watching my independence decline as my progression grew. My children were partial caregivers in addition to my 'babies,' and I wasn't happy with the unexpected turn of my life's trajectory. But somewhere along the way, I made the decision to overcomeand not succumb. So at present, I am just doing what I can while I can and taking it day-by-day.
One of the things I can and love to do is write, so allow me to share a poem that I wrote about raising MS awareness:
Rhyming about MS
It begins: A random savage attack of the body within disturbs its peace.
Scientifically stated, an abnormal immune system response brings inflammation in the central nervous system, damaging the myelin sheath.
Subsequently, the process of injury and inflammation damages nerve fibers in the brain and spine, leaving multiple scars, prompting symptoms, such as the below, to present.
Coping with symptoms
Numbness, tingling, dizziness, impaired gait and mobility, blurred vision, bladder and bowel disturbances, temperature sensitivity, fatigue, muscle weakness – all of which are unpleasant.
A neurologist will order an MRI, perhaps a spinal tap, and after seeing lesions and evaluating the fluid surrounding the brain and spine, he/she may deduce multiple sclerosis (MS) as the culprit.
At this juncture, the new normal of living with a chronic degenerative disease begins. And it's important to begin treatment and identify coping skills because this is not an easy diagnosis.
The symptoms are vast, there are several stages, and MS doesn't affect everyone the same, which is why it is referred to as the snowflake disease.
Finding ways to endure
Yet, it's advantageous for us to be connected to support one another, have a safe space to share experiences; all that we're able to do within our MS communities.
When will it end: MS doesn't go away, in fact there is no cure.
There are medications to treat symptoms, DMT's intended to slow progression, but unfortunately for now the disease must be endured.
There is always hope
However, to conclude on a much more optimistic note..
Over the years with ongoing research there've been several scientific and technological breakthroughs and, in that, there is always hope.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: