My Story

I am now affiliated with the National Foundation for Transplants. It's a great organization that helps transplant patients raise money for costs not covered by insurance. As part of the application process, they asked me to write a biography. I'll set up a link to NFT when I'm listed on their website.

About Me:
I was born the youngest child of an English mother and Canadian-American father. My parents met in England during WWII. They came to California for my father to pursue an engineering degree. They loved it, and they stayed. My mother remained "English" until the day she died and proudly hung a 50 foot Union Jack (the English flag) from our roof.

My relationships with others--giving love and being loved--are the most important thing to me. I live life by the Golden Rule: I try to treat others the way I want to be treated myself. One of my favorite things to do is take long walks with my dogs. If a friend is along too, I'm in heaven. I am rarely able to do this now because I have so little stamina--and I miss it. Spending time in my garden or just being outdoors heals my heart. I enjoy botanical gardens and old houses with interesting architecture. I'm interested in spiritual growth and have been doing Jungian dream analysis for many years. I started doing centering prayer 3 years ago. It brings me peace and calmness. I love dogs and used to volunteer for a rescue organization. I also belong to St. James' Episcopal Church. I sang in the choir until my health made that impossible. It broke my heart when my choir folder was reassigned to someone else. I hesitate to write about church because though it's important, I really dislike anything that smacks of proselytizing or religiosity. Faith has sustained me through the darkest days and I see God in the kindness of my friends and family. Music has always been a big part of my life: I play the piano and I love to sing (I sing to my dogs!). These activities have been greatly curtailed by my illness, but after the transplant I will be able to do them again. I have a strong creative drive that always seeks expression. That's taken the form of home decorating and garden projects when I was stronger, but now emerges in sewing. I am coping with how sad I feel by making hats and scarves to cover my post-transplant bald head. Losing my hair is going to be hard. I cry when I think about it. It will take 3 months after the transplant chemo before my hair even starts to grow. I've just finished sewing a red hat; I get impatient and want to hurry things along, but I took my time, and the finished hat looks mighty cute and cheers me up. I don't want to look ugly or be an object of pity.

About My Illness:
I developed an autoimmune disease when I was in my late twenties--myasthenia gravis. It is a neuromuscular disease: my body makes antibodies against my skeletal muscles. I was ambitious, hard-working, and newly-married when I got sick. I had trouble holding up my head and lifting my arms up; I stumbled and fell frequently; and I had trouble speaking clearly. It was almost 4 years before I was diagnosed, and those were very hard years. My husband--the person I trusted to love and help me-- couldn't handle my health problems. He left. I felt crushed by the disease and its repercussions. Who was I now that I could no longer work? Now that I was divorced and childless? Our culture defines people by the work we do. The first thing you are asked when meeting someone new, is "What do you do?" I struggled to define myself and believe I had intrinsic worth inspite of disability. I have always believed that although I have the disease, it doesn't have me. I am the same funny, quirky soul I always was...ill or well.
The story of my current illness begins with a dog—an adorable little rat terrier. (Do you detect a dog-theme in this biography?) I pulled him from death row at the animal shelter as part of my volunteer work with Rat Terrier Rescue. He had a nasty cough. It’s very rare that a virus will cross species and infect a human, but that’s what happened to me. I came down with severe flu symptoms, and was ill for two weeks. Then, instead of recovering, I got much worse. I spent a month in the hospital, much of it on life support. The infection triggered a form of necrotizing vasculitis—Polyarteritis Nodosa (PAN). The first episode of PAN is usually fatal: only 10% survive it. I did survive, and felt overwhelmed by having two autoimmune diseases. In both myasthenia gravis and PAN the body’s immune system attacks a component of muscle. PAN attacks the muscular lining of arteries (the insides of blood vessel walls).

PAN primarly affects middle-aged adults. I was 49 when I got it. The symptoms are fever, fatigue, weakness, weight loss and severe muscle and joint pain. Because I have it in my temporal arteries and my brain, I get head and face pain too. It can affect a wide variety of organs, but typically targets the skin, joints, gastrointestinal tract, kidney and heart. The 5-year survival rate with PAN is 50 to 60 percent. When more than three organs are involved, the 5-year survival rate is zero. I have it in my brain, skin, eyes, kidneys, and heart, so I will not live long without a stem cell transplant. It’s my great fortune that Northwestern Memorial Hospital in Chicago does experimental stem cell transplants for necrotizing vasculitis. The results are impressive: 3 of the 4 patients who have been transplanted are in remission. I have a very good chance of a cure. No one knows what will happen with the myasthenia gravis: it might go into remission or stay the same. The myasthenia is stable now: the PAN is life threatening.
What I'm looking forward to doing when I am in remission:
I'll take long walks with my dogs in the foothills--I love how it smells there in the morning (maybe it's sage I smell, I'm not sure), I'll do much more gardening-- I grow antique roses and cranesbills, and they have become neglected during my illness. My father built me a redwood teepee for growing veggies vertically, so I can have a little vegetable garden. Because repetitive motion of my hands has been so difficult, I had to give up many things I enjoyed. I'll be able to do them again! There will be a lot more cooking and piano-playing in my life. I acquired a "surprise" puppy last year: she needed a home urgently, and while I didn't have health to give, I had lots of love. Mellie Jo is a retired fly-ball dog and a big, goofy Giant Rat Terrier (30 pounds of muscle and energy). She was on a relay-race team of dogs. She didn't like it, though, so she took very early retirement from the sport and came to live with me and Sophie (my mini Rat Terrier). I'll be able to give her the training and attention she deserves. Heel! Sit! Stay! Come! No Jumping!

Even though I am intuitive and a relationship-oriented person, I am highly analytical, too. I have an MA in Human Development (Pacific Oaks 1986) and a PhD in Educational Psychology (USC 1990). I taught statistics and measurement theory at the graduate level. I also had a consulting business helping clients plan and interpret statistical analyses and evaluations. I particularly enjoyed seeing the practical implications of my work: I helped clients determine who would benefit from enrollment in a sheltered workshop and understand why students either continue playing a musical instrument or quit it. I'd like to combine my love of people with my statistics and testing skills to work as a school psychologist or educational psychologist.