People asked for the text of my memorial speech:

Thank you to everyone who came before me for your recollections. It’s hard to imagine Mom being silly and good to be reminded that there was a time when she was. It’s not quite as hard to imagine her taking a keen interest in someone’s bed-making achievements.

Progressive diseases are all terrible in their own way, and multiple sclerosis is no exception.

Our society is bad at thinking and talking about aging and death, but we all eventually get to a point where we more or less know what the process looks like on average.

I don’t think Mom would have wanted you to miss out on an important educational opportunity, so here’s MS biology in brief:

The immune system somehow starts to think the myelin sheath is a threat. The myelin sheath wraps around our neurons to provide electrical insulation so that the nerves can carry signals properly. Because the immune response is somewhat random, the exact symptoms can change from person to person, but generally speaking, the farther a nerve signal has to travel from your brain, the more likely it is to slow or stop. The longest nerve paths have the highest chance of being randomly impacted.

Mom was diagnosed in the mid 90’s and her disease progressed rapidly in the first few years. She was walking unaided when I left for college in ‘96 and needed a wheelchair at my graduation in 2000. That’s much faster than average for MS.

We expect that our bodies and brains will peak when we’re in our twenties and our wisdom at the end of life, with fairly smooth curves along the way. MS takes the body curve and bends it downward away from the brain curve, sometimes sharply and sometimes slowly, so that you end up with a body that can do less than you expect at a certain age.

I don’t think I ever heard mom complain about the disease itself. She was frustrated that MS medications don’t heal the damage. They only slow the progression, but not for everyone and with no real way to know at the time if it was helping her specifically. That’s a lot of ifs and maybes for some pretty unpleasant meds. What she did complain about was her caregivers. It was always frustrating when health aides or family didn’t, couldn’t or wouldn’t do the things she wanted.

Mom was determined to maintain the best quality of life possible and put much effort into planning trips for her and my dad and sometimes other friends and family. It required careful planning and communication with hotels and other stopping places to ensure that they worked for her needs. The Americans with Disabilities Act could only guarantee that there was a space that might work, not that there was one that would actually work. Every person with a disability has different needs and the cheapest possible interpretation of the ADA rarely meets those specific needs.

You’ve heard the word determined this afternoon and when I was searching for a single word to sum up my mother, that was the one that spoke to me.

It took determination to engage with life after the early death of her father.

It took a special level of determination to pursue a career in sciences as a woman in the 70’s. (Unfortunately, that doesn’t seem to have changed as much as one would hope.) She defended her dissertation a few months after I was born, which if you’ve ever defended a dissertation or had a baby you can appreciate. She found a way to parent the way she wanted and still conduct research by making a career outside the standard tenure track.

It took determination to pursue the best possible life as MS took things away from her.

It took determination to pursue that best possible life regardless of the cost to her caregivers and my dad bore the brunt of that cost. My advice to those experiencing physical decline, whether as part of the normal aging process or as a result of progressive illness, is to do your best to ensure you notice and appreciate what it is those around you are giving up to assist you.

My other advice to everyone is to have conversations about end of life decisions before it comes up, and since it can come up at any time, tomorrow is a great day to do it. Mom gave us more insight to work from than some, but it was still hard because there are so many gray areas in outcomes. A typical advanced directive says things like, “If I will be permanently in X situation, do Y.” What if you are intermittently in that situation? How much intervention do you want if it’s uncertain whether you might recover from X situation? Keep in mind that once you’ve recovered enough to know that you will be permanently in situation X, it’s legally and ethically difficult to stop an intervention.

An idea a friend passed on to me that helped during the last few days in the hospital was asking, “what is a good day for you?” Letting your loved ones answer the question of whether you’ll ever be able to have a good day again is a powerful decision making aid.

Ok, enough of that!

Here are some cool things I got to do because of mom that very few other kids get to do:

-Transfer DNA samples with a pipette from the liquid with the chopped up liver bits to the little chambers at the start of the column on an electrophoresis gel at age eight or something like that.

-Interpret DNA base pairs from X-ray film into a long column of letters and enter those letters into the computer one at a time.

-Learn early on that I did not want to be a laboratory scientist. 🙂

-Truly appreciate the magnitude of progress in DNA sequencing technology. Lena asked the other day how many seconds it would take a modern machine to sequence a single base pair that took maybe a minute on average in the early days. Looking at the specs for a high end modern machine just now, it looks like the appropriate question is how many millions of base pairs a machine can process per second.

-Visit every outdoor museum and a tenth of the art museums in Europe within an hour of our travel route. (There are a lot of art museums.)

-Fall in love with learning and noticing. I want to know a little bit about everything and notice everything which isn’t quite in line with the modern world’s desire for specialists, but I’m proud when Neil thinks I know everything. It’s nice to have that for a few years before he realizes that I don't actually know everything and then the few additional years before he becomes convinced “you don’t know anything, Dad!”

-Get a sense of what it takes to have a good day. Mom had a lot of good days long after the point where 16 year old me thought possible. I’m grateful that she did.

Peg was such an important and significant person in my life and Yuri’s… For being an academic guidance during our time in Berkeley, and mostly for being a mother figure to me, during my pregnancy, and helping me so much… Remembering how gentle she was, how she was able to understand and protect the less favorable. And offering help, whenever she could. I am really grateful to have knowing her, to be a person that deserved her attention and she will be always in my memory, as one of the most kind, amiable, generous and thoughtful person I had the pleasure and opportunity to be a friend...

She was such, such, such a wonderful person! I have such fond memories of her... How she helped us when we have just arrived in Berkeley. In the lab, at first, teaching us everything. I knew nothing about molecular work!!! Barely spoke English. And in a few years, after that, when she had to leave the MVZ, she supported me as the person to be the lab manager… But I mostly treasured her, because she was a mother figure to me, during my pregnancy and Sarah’s first months. I was there, pregnant, with no female guidance. Peg hold my hand and took me to do shopping! To find priceless places to buy baby clothes, apparel, etc. Seems foolish: go shopping? But it was not… When you are pregnant, in a foreign country, away from your family, with no much money, and can rely on such a sympathetic, caring and lovely person, that you trust and admire to help you, is everything… And I miss picking berries with Peg and Gary in Pleasanton…

Love you Peg. Thank you…

Leo

We first met Peg when we were 3 years old, when we moved into the Orchard Ridge neighborhood. We grew up together, playing in the neighborhood. Many times we’d go up to Peg’s house to play on a Saturday and her mother would tell us that she wasn’t awake yet because she had been reading late into the night.

We were girl scouts together in troop 510. We had many adventures with our troop, including canoing, camping, and backpacking on the Appalachian Trail.

When Peg broke her leg skiing at the Rewey’s hill, our Dad used his Boy Scout skills to help make a stretcher to carry her back up the hill to transportation, and we were put in charge of her safety on the stairs at Nakoma primary school when she was on crutches.

Throughout the years we kept in touch in various ways. An important one was Christmas, that brought us all back to Madison to visit family.

Later, after our children were grown, we took many wonderful driving trips with Peg and Gary over 13 years. Peg planned them carefully to include places to see birds and wildflowers and to enjoy special restaurants. And handicapped accessible rest stops. She alternated trips to the coast and inland.