NeuroTalk Support Groups - Appreciation of those who have gone before

Now that I'm older, I think a lot about those who have left the world, especially those who struggled with illness bravely, continued to work as long as they could, sometimes were not diagnosed, and generally were good people in spite of their handicaps.

My chief MS go-before is my aunt Wilhelmina. She changed her name to Lucile in the WWI, as a child, because it was unpopular to have a German name. She was dx'd with MS and it was so bad that she was blind, motionless, and in a nursing home by age 50. She had been a talented teacher, a math instructor at Lincoln High in Portland, and an organist at the church her father and uncles founded in Portland. She was a graduate of Reed College and the U. of Oregon.
I wish I had known that I should go to see her more. I did make some trips to see her, even when I myself was not well. I have her needlepoint framed on my wall. She lived within blocks of Dr. Swank's office in Portland, but probably never heard of him even though he had a long career at Oregon Health Sciences University--maybe he could have helped her. Yes, her apartment was literally within a few blocks of Dr. Swank; I have seen both.

My father, her brother, struggled all his life without a dx. He probably had Porphyria. His situation differed a great deal from Wilhelmina's. He had abdominal pain which never let up. He worked hard as an art editor at a newspaper, and taught graphic arts at the U.W. so I could go to Stanford, and I had an awful time at Stanford because it was my first big "attack" of "whatever", and no one knew what it was. I must have disappointed him, and that is a great disappointment to me. But I did get a Master's from Stanford and went on to teach in college!

My grandmother, my father's mother, probably had Porphyria. She had 14 abdominal operations to try to find the source of her pain, unsuccessful. She was a patient loving mother, and I wish I had been able to see her more when I was growing up. But we lived far apart. I have her beloved china displayed on a bookcase, in memory of her, one of the few things which survived many house moves in which movers stole things or lost or broke them.

My father's cousin Adrian, died of MS, drowned. He left a wife and a daughter. I too nearly drowned when I was teaching in Chico, in a deep creek, where I became mostly paralyzed while swimming in 110 degree heat. I was saved by a rubber swan floating by, which I was able to put my arm over, as no one noticed my condition. I never knew Adrian except when he came to see my father after he got MS. I was a very small child and yet I do remember him.

I went to see my father's cousins at a funeral for the last one, Mark Delsman, who was the baby of a family of nine. I found that no one except Adrian, to their knowledge, had had one of these diseases. They were healthy and fine looking people. Mark Delsman, in a picture, looked just like my dad. I wish I had known these people. There was animosity among the families over a religious disagreement, and thus I didn't get to know my father's cousins or their children in their lifetimes, even though I lived in the same city as they did. I have almost no family, and would have liked to have known these cousins better. What a tragedy that people part over things which are not even central to their common faith. I am much alone now, except for one son.

Pax, family, I wish it had not been such a battle, but I'm proud of you for the fight you put up.

Mariel