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 headed…it’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.

SO…..

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

In health and hope,
Jessica

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