Summoning the strength

Be the Captain of your ship--as much as you can

When you get a diagnosis of a terminal illness, the gut wrenching feeling is overwhelming as anyone can imagine. May 24, 2016, 46 months ago, I learned that my time on earth was going to be much shorter than I’d anticipated. Most ALS patients die within 3-5 years after learning the awful news. I’ve been living with this threat, which sometimes overwhelms and other times can be ignored.

The Buddhist religion holds that when we are born we begin our journey towards death—it's the natural way of things. Nothing is permanent. We’re on earth for a short time and its best to make the most of this time doing good works. No one can expect an easy time of it. Pain is part of life.

Who doesn't love a flower and a bee?

Since May 2016, I’ve lost many friends and colleagues to cancer, stroke, heart disease, old age, and despair. Hell, I was the one who was supposed to go—not them. Their shortened lives remind me every day to live my life as full as I can make it and find the importance in relationships and people. I’ve gotten through this period of time with a surprising response from folks that I would have not expected to step up and bond with my family. For example, just before the state of California shut down, we’d spent a great week with my daughter in law’s parents, Jim and Faith, at our house in Riverside. It was an innocent week with Rum-Cokes, good wine, stories of our college days, working on getting my new medical supplies working, and a lot of laughing. That week seems distant, even faraway.

The University of California Riverside is on general lockdown. My final projects are on full hold—or cancelled. Research has slowed to a crawl, instruments are idled, unknowns remain unknown. Sure, these are small things to the general scheme of things, but they constitute my Purpose in Life—the stuff that keeps me (and many others) going. All of us go through life with a purpose—hopefully we understand what our purpose is and are able to fulfill it. With the COVID-19, that’s all come to a grinding halt.

My son’s clinical nursing training has come to a screeching halt. My daughter’s teaching has hit a wall—she’ll soon be furloughed. My daughter in law is working in a hospital with barely enough PPE for her to keep safe. My mother’s future in Independent Living is nearing a necessary end, but how will my sister in law and brother get her into a more secure living situation without compromising their health? Chris is stuck trying to hold the home front together while taking a breather for himself. Meanwhile, we have billionaires and politicians telling us we should go back to business as usual.

Isn't he beautiful?

One Texas elected official thought that “grandparents” should take care of themselves and let the rest of the people go back to work. I’d like nothing better than to have all the young people in my life resume their active lives. But sacrificing older folks isn’t a solution to this complex problem.

I’ve thought carefully through the stories in Italy where decisions about who would get ventilator support if not enough systems were available to treat incoming patients. I’ve decided that if I do get the coronavirus, I’m going to remain at home, rest, drink chicken soup, and let things play out as they will. I’ll see if I can get some marijuana sent in; morphine if need be. It will be OK for me. We’re all dying of something, aren’t we?

We're all dying of something—a phrase I’d never thought I’d hear, but since I’ve had to reveal my medical situation to people, I’ve heard it more times than I’ve been comfortable with. I even wrote to Dear Amy, an advice columnist in the LA Times newspaper about this startling statement. She answered that while this was an extremely rude thing to say, it probably comes from a person’s discomfort on learning distressing information.

The stained glass at Chartes cathedral--beautiful

This “grandparent” isn’t going lightly. I’m going to do what I can to be strong, take care of myself, keep going, and should any viruses come into my sphere, I’ll focus the strength I’ve used thus far to keep ALS under control, to help deal with a rogue virus.

Meanwhile, those billionaires could be paying the wages of all the people who’ve lost their jobs—and pay for their health insurance that they will lose-- rather than whining about how their wealth has taken a hit. And politicians who don’t respect scientific reason and data have, in my opinion, no place in our society. They need to go off on their own and not determine the path of my life or yours.

As a writer, I’m blessed with the ability to express myself, get things off my chest. For those of you who aren’t into this outlet, take care. Write to me your thoughts and feelings if you’d like. (marilyn.fogel@ucr.edu)

Chicken for the soul--apparently it works as good as anything

To lighten the blog, keep reading. Some women in my sphere have been circulating quotes of encouragement this week. Below are some of them.

“The biggest crisis is also the greatest opportunity.”

“Let It Be a Dance (Ric Masten, abridged)

Let it be a dance we do.

May I have this dance with you?

Through the good times and the bad times, too,

Let it be a dance.

Learn to follow, learn to lead,

Feel the rhythm, fill the need.

To reap the harvest, plant the seed.

And let it be a dance.

Let the sun shine, let it rain,

Share the laughter, bare the pain,

And round and round we go again.

Let it be a dance.”

“I’ve gone to look for myself. If I should return before I get back, keep me here.”

“Meditation on Beauty by J. Estanislao Lopez

There are days I think beauty has been exhausted but then I read about the New York subway cars that,

dumped into the ocean, have become synthetic reefs.


Coral gilds the stanchions, feathered with dim Atlantic light.

Fish glisten, darting from a window into the sea grass


that bends around them like green flames—



this is human-enabled grace. So maybe there’s room


in the margin of error for us to save ourselves


from the trends of self-destruction.


Or maybe such beauty is just another distraction,



stuffing our hearts with its currency, paraded for applause.


Here, in the South, you can hear applause


coming from the ground: even the buried are divided.


At the bottom of the Gulf, dark with Mississippi silt,



rests the broken derrick of an oil rig—and isn’t oil


also beautiful? Ancient and opaque, like an allegory



that suggests we sacrifice our most beloved. Likely


ourselves. In one photograph, a sea turtle skims its belly



across a hull, unimpressed with what’s restored,
barely aware of the ocean around it growing warm.”

“Human beings are members of one another,

since in their creation they are of one essence.

When the conditions of the time brings a member (limb) to pain,

the other members (limbs) will suffer from discomfort.

You, who are indifferent to the misery of others,

it is not fitting that they should call you a human being”

                        by Saadi Shirazi- 13th century Persian Poet