Sunday, May 3, 2015

One Wild and Precious Life

"Tell me, what is it you plan to do
with your one wild and precious life?
" ~ Mary Oliver

Lately I have been thinking a lot (you know me well enough by now to know that this is both a blessing and a curse. Not only my cross to bear but also for all those around me who are subjected to my wandering thoughts and dreams and random ideas ad nauseum...)I have been thinking about genetic testing. Specifically genetic testing for early onset Alzheimer's disease (EOAD).

I was reading a hand-me-down issue of a highly intellectual weekly magazine (ahem.) and it featured a story about a woman who was taking care of her mom who had EOAD. The mom was in her late 50's and the care-taker was in her late 30's. She was getting tested for EOAD as it is highly genetic - more so than late onset. As you may know, my mom was only 55 when she was diagnosed with severe early onset dementia. Which means she had most likely been experiencing symptoms for a while before getting diagnosed. She had a particularly aggressive form of the disease and passed away at age 61.

I am 47.

Most likely the recent talk about the movie "Still Alice" and Julianne Moore's Oscar win and the subsequent attention shone on early-onset has crept into my sub-conscious. I haven't read the book nor seen the movie. Too close to home and I don't like to sob audibly in public if I can avoid it. Then, the magazine article and my annual review of my life and where I am's just a hot, bubbly existential stew.

The idea of genetic testing is super interesting to me. Not everyone is comfortable talking about it - or even thinking about it. But I am spending a lot of time thinking about it. Apparently if you have one parent with the gene then you have a 50% chance of developing the disease as well.

Now, I may not be able to get tested - there are several companies working on a simple blood test but it is not commercially available yet. In any event, I am doing some research and have reached out to research organizations at UCSF and UCDavis who both have top-notch Alzheimer's research programs. I may or may not be able to get tested in the near future, but I think I would, if I could.

This is my thinking: I am 47. My mom was diagnosed at 55, so that gives me (IF I carry the gene), what? seven years? And she died at 61, so that's 14 years?

The question is: would I live my life differently if I knew I only had 7 really good years left? My answer is yes.

Let me pause here. I know that I may not even have seven years left - I have had several friends my age who have been diagnosed with cancer (thankfully they are all survivors); I know people who have been killed in car accidents, I know shit happens. I understand not one day is promised to us. I get that.

While I understand nothing is promised, in general I - and most people I know - act as if they may live for many many years to come. And that is what I normally do too. I think about a long-term job, retirement and 401(k)s and college funds and long-term disability payments and savings and how can I make up for the lack of financial security of my past so that my future and that of my children is somewhat secure?

But if I knew that I would develop Alzheimer's by the age of 60 what would I do differently?

I would finally take action on my will, my living will, my life insurance.

I would worry less about my long-term savings and retirement planning and a) put more away for my kids and b) travel more.

My experience with my mom showed me that if you have ANY money at all - anything of value (even negligible) you do not qualify for any kind of help in terms of medical care, long-term care, etc. I mean it - you can't have anything - a house, a car that is worth more than $1500 savings, checking accounts, retirement ANYTHING. It all counts against you. And they audit your life and your accounts going back 5 years.

I don't want to bleed the financial life of my children dry to take care of me. I don't have family with money to rescue me or my kids.

I would move my money around and pay more into the travel fund than the retirement fund.

I wouldn't put off the experiences with my kids that I want to have. Instead of planning a big trip every three years I would travel every year.

I would make sure that my friends and family knew how much they meant to me and make as many memories with them as I could. I would make my wishes known about how to take care of me and what to do with me when I die.

And the flip side: what would I do if I found out I don't have the gene?

Breathe easier I suppose.

Give thanks that my children don't have the gene.

Stop worrying when I can't find the word for something.

Keep saving for retirement.

Keep looking for the better-paying job that maximizes my earning potential over the coming 10-20 years.


Live for today or save for tomorrow?
What do you think?

In health and hope,

Wednesday, February 25, 2015

Backward Engineering

Yesterday morning I posted this on Facebook:

I feel like I'm having a mid-life crisis. Time is flying by, my kids are growing up so fast, life changes in the blink of an eye. What is truly important in this life? How do I winnow the inessential? How do I make what remains count?

It was due, in part, to a country song called "You're Gonna Miss This," by Trace Adkins plus at least four friends my age being diagnosed with breast cancer in the last year; acquaintances losing family members to suicide recently; and a general sense of time passing by too quickly.

I only have my children 50% of the time and it doesn't feel like enough - they grow and change so fast. My daughter is enrolling in high school already. She is two short years away from driving and I am already second or third fiddle to her friends. It's natural and I knew it was coming and yet, I just want to tap the brakes from time to time.

A natural extension of this train of thought - for me at least - is to question, or at least evaluate, what I spend my time on - is it a good use of my time? Am I spending my precious, un-promised moments on things that a) matter and b) bring me joy?

I got a lot of good feedback on my post. One of the responses was from a dear friend who wrote: "Read beautifully written obituaries, and then decide what you want yours to say in 40 years..."

I have long been a fan of the inspiring obituary. Really. Probably not a surprise, since I am overly fond of looking outward for guidance. In any event I liked the idea and spent some time researching (natch...) and reading inspiring obituaries like this one, and this one.

And then I began to work on my own. And it goes a little something like this:

Jessica Johnson died peacefully in her sleep last week at the age of 80. The day she died was like any other; she woke at the crack of 8:00, made coffee, fed the cats, dogs, horses and other animals, and walked the two mile loop around the property she shared with her partner of 36 years, Scott Christie. An accomplished poet and novelist, Jessica spent most days at the large wooden desk Scott made for her reading and writing while he worked in his workshop nearby.

Jessica was born in 1967, the only child of the union of her mother, Nora Schewe and her father, William E. (Bill) Johnson, Jr. She was raised in Aptos and spent most of her life there until she and Scott moved to their Carmel Valley property in 2023 after an eight-year engagement and their wedding at Carmel City Hall.

Jessica was a third generation track athlete and enjoyed an distinguished athletic career. She was a three time All-American and was inducted into both her high school and college Halls of Fame for her accomplishments. She gave back to the sport through coaching and enjoyed watching Maya, Tosh and their children carry on the tradition. As Jessica liked to say; “Fast is the family business.”

Jessica’s greatest joys were her children, Maya and Tosh, her lifelong friends (Sally, Jodi, Charzet and Alannah), and her family - particularly her sister, Juniper, to whom she donated a kidney in 2013. She loved cooking and spending hours around the table eating and laughing with her "framily."

Jessica and Scott's children inspired her every day and her heart was full with pride at their accomplishments in life. Maya and Tosh remember their mom as goofy and beautiful and willing to talk about anything with an open mind. She supported them enthusiastically and wholeheartedly and encouraged them to follow their dreams, never be afraid of change and always be brave. Among their most treasured memories are the big trips Jessica loved to plan and take - London and Paris, Spain, The Summer in the Italian Villa, summers at Kennedy Meadows, and of course, the cross country RV trip! Early on she wanted to make sure the kids went to all the countries their ancestors were from so they went to England, Ireland, France,Germany,Croatia, Serbia, Norway and the Bahamas. She tried to balance fun with practicality and always had a Plan B.

A long-time student of Buddhism and meditation, Jessica led a life of curiosity and contemplation. She was nourished by silence, naps and foot rubs – which her husband, Scott, was always willing to provide. Together they enjoyed putting countless miles on the motorcycle, discovering new restaurants and spending quiet time side by side. They both felt extremely fortunate to have found each other later in life and liked to say, "the third time is the charm!"

Jessica loved to dance in kitchen (preferably to disco), bake Christmas cookies from her grandmother's recipes, listen to the birds in the morning and the smell of horses. She believed in the healing power of pink wine and belly laughs, manifesting your biggest dreams, and that if you have lived your life well you will live on in the hearts, minds and souls of those who knew you.

She did. And she will.

You will find her ashes under the red Japanese maple tree.