I was only about eight. Mom (Betty Harsch) had noticed dryness, chafing and tightness around the webs of her fingers. I remember her looking scared at my father when they discussed it. She saw our family doctor about it, and he, being a small town general practitioner had difficulty recognizing it for what it was. It was 6 months later that she was diagnosed with Scleroderma. She was told by one doctor she had 6 months to one year to live. She lived with it for fifteen years (longer than most) before it finally took her. She had a heart attack. The disease can be systemic and can affect the organs of the body as well, and I guess her heart was the first to go… though she had major problems in her other organs too.
Any disease as crippling as Scleroderma, of course, is horrible and really shouldn’t have to be endured by anyone. But, what some people don’t realize is what it does to families. My father and mother had come from hard working families and had worked hard during their lives, in order to give to their children a better future and to ensure for themselves a decent situation for their retirement years. One would probably consider them upper middle class. Dad was a timber faller specializing in falling trees in hard to get at places or in hazardous situations. Together they owned a retirement home and operated that for 20 years. They had done all the right things in the ways of insuring and protecting themselves with life insurance, home insurance and health insurance. Within 2-3 years, thinking they were well protected, her expensive health care needs would soon hit the cap of what the insurance would cover and that was it, just a letter in the mail. Thank you for 20 years of payments, but you’re on your own now. They would spend the next four years tapping savings, selling the business, selling the assets and finally our home. We ended up in an apartment and on a variety of social welfare programs to get by.
Her suffering and these events forever changed who I am. It has been fifteen years since she died, and I can honestly say there hasn’t been a day gone by I haven’t thought of the disease or the horrible sadness it brought us all.
In this photo you can see her hands, she had no ability to make a fist and could only get thumb and forefinger about an inch from touching, they were little more than useless paddles really. I recall walking in a clothing store with her one year and a woman approaching us stopped some 15-20 feet away, looked at her with her mouth opened and asked quite loudly “My God! What happened to your hands?” My mom replied rather hotly and with even more volume: “The pressure cooker blew up on me!” It would have been hilarious if only we could have forgotten the demon responsible for that interchange. A minute later we left, with her crying softly.
I’ve kept this recollection short and well haven’t divulged too much, you see there are memories for me that are too painful to share here… all I can say is that I wouldn’t wish something like Scleroderma on to my worst enemy. I pray that some day there will be a cure and that no one and no family will ever endure living with this crippling, slowly life draining disease again.
This year, my family and I will participate in the first annual “Stepping Out To Cure Scleroderma.” My four year old daughter and two year old son will walk with me in the 2K fun run. My wife, Lori will run in the 10K timed run. We are asking that our friends, family and contacts find it in their hearts to give as generously as they can by sponsoring us in the event (under my name: http://www.firstgiving.com/timharsch)
My children will never get to meet the spit fire that was their grandmother. But they will learn the spirit of giving by participating in events like these… and hopefully Mom will be with us on that day.
