My journey with Ataxia has been a life full of ups and downs. Ataxia has defined most of my life since it was first diagnosed in 1988. I was 38 years old and I am now 69. My mobility, balance, speech , swallowing and motor skills have been adversely affected by this hereditary disorder that has run through my family for four generations.
From 1951 – 1988, unknowingly I was carrying the Ataxia gene. For 37 years I was able to live a normal life and live out my ultimate dream of becoming a professional musician as a singer. In 1974, I went to Germany to begin my life as an opera singer. My contracts took me to Munich, Klagenfurt, Ulm, Bremen, Salzburg, Pforzheim, Koblenz, and Cologne as a professional opera singer. I was able to live out 22 years of singing, be self-sufficient, and make my lifelong dream come true.
Learning About My Diagnosis
In 1988, at the age of 37, my singing career and life as I knew and loved it, came to an abrupt stop. The diagnosis of Ataxia was discovered by neurologists, forcing doctors to tell me to stop all present singing contracts and to cancel all future contracts. They advised me to retrain and study for a disability grant from the German government. But there was no confidence that the Ataxia diagnosis would not disrupt my life.
From 1992 – 1998 my new life took me into a new profession using business and cultural management. All the while the Ataxia was on its progressive movement. This finally put an end to a career in theater management and ballet school public relations.
In 1999 – 2015 I was now needing level 1 and 2 care and mobility aids (home walker and an electric scooter) to manage my life as independently as possible.
As of 2015 to present, I am totally reliant on personal care. My disability has been assessed at level 3/4. My independence and self-sufficient lifestyle has been robbed by this relentless disease called Ataxia. My ability to care for myself requires constant monitoring 24/7. It includes from my caretaker, housekeeping, cooking, bathing, medication administration, feeding, and driving to doctor appointments and pharmacies.
Hopes for the Future
The greatest loss of all was having to give up my singing career in Europe as an aspiring opera singer. The greatest advantage to this miserable situation was letting my partner, enter my life. To have and live through something like Ataxia and the negative aspects of life this disease brings with it – is debilitating. You have to have someone by your side. You can’t go it alone.
By accepting my disability, I was able to move forward and make something of my life. Both Germany and Spain played a pivotal role in my ability to help myself. Germany gave me management and organizational skills and Spain allowed me to live out a dream for 4 years to supply the Costa Blanca with hospice care and palliative services.
The power of Positivity got me through it. Here are some suggestions to help others as well:
- Have a positive attitude about your disability.
- See white and not black in life situations.
- Invite some people into your sphere and isolate others.
- Find joy in life instead of looking for condemnation.
- “Do unto others as they would do unto you” – Do good!
- Live without guilt and have peace of mind – accept being disabled
ask for the aids and equipment you need to cope.