Surviving and keep going! – Ataxia

Surviving and keep going!

Surviving and keep going!

Martha has struggled with ataxia for over 30 years, here she tells us about her past careers.

I’m Martha and I am the fourth generation with hereditary ataxia in my family. I have struggled with ataxia for over 30 years. Since I was a child I’ve always aspired to sing on Broadway (1956 – understudy for Gretel in Sound of Music), I trained in classical vocal studies at Harry College of Music and privately in NYC (1968-1974). I went to Europe to gain experience as an opera singer in Germany, Austria and Switzerland, while simultaneously learning German and its culture.

The first opera contracts came in the cities of Ulm, Klagenfurt, Salzburg, Munich, Pforzheim, Cologne and others. All the while, ataxia was living and growing inside of me. In 1988, after extensive balance and speech problems, a neurologist in Bonn diagnosed me with ataxia. The doctors said: “In your best interest for a productive future, you should leave singing and performances and give up all of your coming contracts.” I was still young enough to train on a disability government grant. But what that new profession should be? The doctors could not say.

I learned cultural management in the theatre of Euskirchen (1989-1992) and became the administrative and public relations manager of a Ballet School in Kall, Germany from 1992-1997. As the progression of ataxia continued, the necessity to leave the cold weather of Germany and move to the warmer climate of Spain with my partner and caretaker, Barbara, was becoming evident. The move to Spain halted the progressive, onward movement of the ataxia. But the need for mobility aids to help me balance and walking stability were now necessary.

In 2003 the disability progressed to a mobility level of 2. This required a walker and an electric scooter to get around. Barbara’s caretaking level was increased as well. To make this time productive, I created a Hospice Charity from 2004-2008. The Sweet Charity Hospice Fund provided home care Hospice services to terminal patients of southern Costa Blanca, Spain.

Finally, after a breast cancer mastectomy in 2007, and more health problems, I was forced to give up work on the Hospice Charity in 2008. My caretaker level and the disability rose to level 3/4 care from 2015 to the present.

But now at 69 years old, I survive and “keep going”!

Image of Martha Harlem
The start of Martha’s European career at 26 years old.

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