Monday, January 27, 2020. A fairly mild weekend temperature-wise for the first month of winter in New York. Temps were in the high 40s and low 50s by day and down into the high 30s at night. On Saturday we got the rain forecast, midday, so torrential the cars on the streets and avenues had their headlights on…so drivers could see clearly. I know, I was out in it on my weekly voyage to Zabar’s. As soon as I found a parking spot on Broadway, the rain stopped and the Sun was peaking through the clouds off-and-on.
This was the Saturday afternoon when our friend Nina Griscom died. She was first diagnosed with ALS (“Lou Gehrig’s Diease”) a little more than two years ago. I last saw her about five months ago, one night at Sette Mezzo. She was walking with a cane but she was such a natural beauty it almost seemed like a fashion statement, and a good one. It was the same bright eyes and smiling face that I’ve known for years.
It was a rich, full life, the kind of New York life that John O’Hara wrote about in his stories for the New Yorker. I can’t recall when I first heard about it — more than a year ago — but Nina’s diagnosed condition was well known. She wasn’t one to keep a secret about reality. And she wore it seriously as if it were her responsibility, the way a mother looks after her child. Otherwise, the grim and serious aside, she still was ready for a good story or something to amuse her. While she was moving into the process of her horrible affliction: a death sentence for which there is evidently no cure or well known treatment.
About five or six weeks ago, she sent me a “speech” that she had written for a Project ALS event. (to learn about them, click here). When it came time to give the speech Nina’s own voice had become seriously impaired from the condition, and so her words were never heard.
What motivated Nina to write and give the speech was to help raise needed funds for research of this terrible disease. So today, we are running her own words about her condition, what people should know; the words she was no longer able to speak clearly because of it. In it you will see what I mean by how she wore her condition.
I WANT TO THANK ALL OF YOU, and my husband Leo Piraino, my daughter Lily Baker and my dear friends for coming this evening to support Project ALS and all the hard work they are doing in the name of finding a cure for this hideous disease. I wish I could be standing here reading this myself but the progression has badly affected my speech resulting in my sounding like the village idiot or the town drunk.
The intention of this speech is to shed my personal light on this hellacious illness without any attempt to Mary Poppinize it.
Two years ago — October 2017 — I noticed a weakness in my right leg. As I’ve always enjoyed great health I assumed it would go away and didn’t look into it. A few months later my right foot began to drop and I was advised to consult a neurologist.
He noticed an additional weakness in my right arm and sent me off to a colleague who specializes in neuromuscular problems. After several Inconclusive MRI’s of the brain, he ordered an EMG which tests the function of nerves and muscles. That is when the first red flag went up.
As you may know, ALS is diagnosed by a process of elimination. The following 3 months were spent doing 8 more brain MRIs, a two and a half hour very unpleasant EMR, 32 vials of blood taken at one sitting, and even a test to rule out breast cancer.
As we all know, life deals us a lot of unexpected tough cards, but in May 2018, the confirmed diagnosis of Sporadic ALS superseded my darkest nightmare.
Historically and currently ALS is a fatal disease with no cure and a life expectancy of 3 to 5 years. In reality that is a misleading statement as after the first year of diagnosis, life begins to become horrific with the decline of muscle function. You may stay alive for up to 5 years but in the most horrible way imaginable. Alive, but not living. Most people would not call the final stage of complete paralysis, a feeding tube and breathing machine living; unless the remaining ability to blink your eyes would provide you with great pleasure.
The first year allowed me a healthy dose of denial as I was able to live life normally except for a dropped foot. Gradually but steadily the weakness progressed to the entire leg, resulting in the use of a cane. During this stage I experienced multiple falls ranging from crashing backwards into a row of bushes to breaking 3 ribs.
Some of the lovely ALS hallmarks began to present. Fasciculations, the subcutaneous jumping of muscles, is one of the most insidious. They are the evil calling cards of the disease, keeping you constantly aware of where it is attacking next and where it is nesting in a given location until the desired result of paralysis has been achieved. Fasciculations occur 24/7 lest you forget your invader.
I was still able to enjoy traveling to Morocco with my daughter and trips to Paris as well as regular lunches and dinners with my husband and friends. I could dress myself, walk up and down the 20-step staircase in our duplex apartment, and remain in a state of denial as severe compromise had not yet presented.
Each case of ALS is somewhat different. Mine progressed steadily without any significant plateaus.
My elegant bamboo cane evolved into crutches which still allowed me to take taxis alone and move around the apartment. But walking more than a block or two was over. Now the right arm began to weaken and my energy levels became lower due to the effort it took simply to shower and dress. In a short time shower and toilet chairs became required. Every three months or so brought a new level of decline leading to my loss of independence and a huge amount of rage as denial was a thing of the past. Many a cell phone was hurled.
July 2019 brought a new level of decline which left me in a wheelchair with a full time aide who was there to haul me in and out of the chair like a sack of potatoes, dress me, shower me, and sit me up in bed … Additionally my voice and ability to swallow food and liquids was severely compromised.
For me the inability to communicate with people easily was the turning point where I felt I was truly living in Hell.
ALS serves to disconnect and isolate you from the world and all that constitutes normal life. There is no future so planning and goal setting are over. Expressing yourself and connecting to friends and daily life is done. No matter how loyal and supportive friends and family are, you are ultimately alone as you cannot share or participate in any aspect of daily life. As such, apathy and hopelessness sets in. At the current moment there is no cure and no real treatment to reverse the total loss of function.
I cannot apologize for my blunt depiction of ALS as it is simply the truth. I can only pray this harsh account will encourage everyone here to support Project ALS for all the groundbreaking work they are doing, working with brilliant scientists and neurologists such as my doctor Neil Shneider to find a cure for this tortuous disease that traps you in your body and literally and figuratively suffocates the life out of you.
In closing, In spite of all, I have the greatest fortune in the world in the form of my extraordinary husband, my precious daughter and the most loyal and loving friends in the world.
For a much more uplifting and extraordinary account of living with ALS please read “Tales from the Bed” by the brave and remarkable Jenifer Estess.
Thank you and good night.