This week’s blog is written by Martha Harlam, founder of Ataxia Awareness – Information – Hope. Ataxia has defined most of her life since she was first diagnosed in 1988 at 38 years old. This is her story!
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 4 generations.
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 someoneby 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.
Ataxia is what you call a creepy crawly disease. You don’t necessarily die directly from the situation, but you can die from its medical complications. The slow progressive nature of this neurological disorder impairs your ability to function normally and in a dignified manner. 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
Who is there to judge you ? Can we control fate? Do we have the power to forgive ? Forgive what ? Ourselves? Being born ? I have the responsibility to learn, educate myself and have enough information to make an informed decision. All this helps me and others. Before I was old enough to make these choices, I was put on to the path of true positivity. Listening to and truly feeling Music is my way of maintaining this disease and turning it all into a positive situation.
I understand and live by a Judo-Christian ideology, the 10 commandments , judicial law and the joy of feeling what music gives to us. I am not a perfect person but I do strive for perfection and try to avoid egotistical ways.