Those of us who live with multiple sclerosis, day in and day out, know that our abilities may dramatically change at any time. That’s the reality of living with a faulty electrical system. If there’s a "short in the cord," the electrical message isn’t going to get through.
Don’t you just sometimes wish that we lived in one of those sci-fi movies, like The Terminator, where a liquid metal body is capable of repairing itself. How cool would that be?
Imagine this scenario involving a minor failure in the central nervous system -
"Houston, we have a problem. Minor breach in the myelin sheath at level C5 right side of the spinal column." Houston: _"Fear not, CNS control. We’ll send in the liquid myelin repair team. You’ll be patched up and ready to roll in ten."
"Hey, I see them comin’ towards the spinal cord, now. Thanks so much, Houston."_
Besides the issue of whether our nerves are going to hold up, there’s the uncertainty of being a reliable source of whatever it is that gives you a sense of accomplishment or helps you to be a contributing member of society.
Fortunately, many people living with MS continue to be gainfully employed and manage to have a fulfilling family and social life. There’s nothing in the MS Manual that says you must immediately give up these activities and goals upon diagnosis.
Now, of course, that faulty electrical system may put up some barriers to the work you were previously doing. For instance, a friend of mine was a dental hygienist but MS took away the feeling and fine motor control in her hands. She lost her job and her health insurance after exhausting her short-term disability. Fortunately for her, she still has access to health coverage through a spouse.
Then there are those of us who are the freelancers, the independent contractors, the self-employed persons who, when MS rears it’s ugly head, do not have short-term disability from an employer. We do not have paid sick leave nor paid vacation time. However, we still have normal living expenses on top of the more expensive health-related costs of living with a chronic illness. Folks who live with MS are an expensive bunch.
Consider everything mentioned above and we have every right to feel insecure and frightened. Afraid of what tomorrow will bring -
Will I be able to see, walk, talk, think, or even lift a fork?
Will I still have my job and the salary and benefits it brings?
Will I choose to use my limited energies wisely?
Will I make it… after it?
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.