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Testimonies: Living with MS

I am unique and for that reason my relationship with MS is equally unique. Shortly before my 38th birthday MS came knocking on my door. There were sporadic instances of giddiness, listlessness, clumsiness and sometimes dizziness. But due to their frequency and brevity I paid no attention to these warnings. That was until I couldn't get out of bed one morning.

Until that morning I was totally unaware of any health problem, and immediately concluded that I was suffering from a stroke. This logic seemed to be in order because I had been under a lot of pressure. I was a Black American expat living in Germany who was trying to raise an average family on a below average salary. Looking back I realize now that I really hated my job but was compelled to keep it. In other words I as stuck in mid-life crisis alley with now way out.

My first encounter was marked with semi paralysis and panic. Nothing on my right side would work, and the left side was only slightly better. My wife reacted immediately and I was a brand new neurological hospital in Schweinfurt. 6 months, 4 doctors, 2 hospitals, 2 spinal taps, 2 MRIs and 1 CAT scan later I was given the final diagnosis of chronic MS.

With the help of medication and rehabilitation I slowly regained some motor controls and speech skills. Despite these encouraging episodes of recovery the German government saw fit to formally label as "Schewbehindert" with a fixed level of 75% disability. Consistent with German law I was then granted certain disability benefits and protections. Despite these proactive actions I lost my job and my self worth along with it. I couldn't provide for my family.

My life after diagnosis had become "terra incognita." For the first time in my life I was unemployed. To make matters worse, I was now a handicapped black man in Germany trying to compete with healthy young people in a country of double digit unemployment. Sure I had extended unemployment benefits, but my family was in tatters. My wife went to work and I found myself at home with a rambunctious pre-schooler who was just as confused as I was about our future.

The only thing certain in my life was the uncertainty of my prognosis. I never knew if things would improve or at least stabilize. So we prepared for the worse, hoped for the best and tried to hang onto what little there was left. Once I had shaken the fear of the future, I began to feel like a victim. I began to blame MS for everything bad thing in my


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Testimonies: Living with MS

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    by Tony Jones

    I am unique and for that reason my relationship with MS is equally unique. Shortly before my 38th birthday MS came k... read more

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Testimonies: Living with MS

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