Ben’s Story

Ben’s Story – by Iva Morris

My name is Iva Morris. I am a Florida resident since 1976, and a Registered Nurse for 40 years with a passion for geriatrics, long term, palliative and hospice care. I support Florida’s terminally ill patients to have the option for Medical Aid in Dying choice in our state.  

I would like to share a story written by my father-in-law Benjamin Morris who passed away from ALS back in 1989 here in Miami. He was the father of 3 grown children, a loving husband, brother, uncle, and grandfather. He was also a published writer, college professor at City College and Pace University in New York and the owner of an advertising and marketing agency. In 1987, he at the age of 67, he was diagnosed with ALS. He died two years later. Benjamin would have been a perfect candidate for Medical Aid in Dying, as he did not want to continue to suffer his increasingly debilitating disease.   

This is a story that he wrote while going through his decline. I hope you will take the time to read it, as it may give you a better understanding of why we so need this Medical Aid In Dying legislation here in Florida.

  THE WAR WITHIN: A Reporter’s Introspection.

  Written March 1989 by Benjamin Morris 

This is a report on my illness and what it is doing to me. Reader discretion is advised and children under 50 should be sent to bed early. The report is rated “XXX”.

For at least two years earlier we had noticed a muscular spasm in my left arm. Questioning the doctor provided no answer: maybe it was nerves. Every six months or so I’d check it out. The priority always was on “serious” things, like an EKG, blood pressure, lower colon (for diverticulitis). The arm caused no alarm. 

In May 1988 the left arm registered some muscular pain, as in a mild cramp, and some weakness was felt. It did not ease. We check it out in St. Joseph’s Hospital on a Saturday afternoon. Pressure was elevated; the resident suggested I see my doctor. EKG was ok. Later that week the doctor prescribed a diuretic for the pressure (180/100), the arm? “Take Advil and see me in a month if weakness persists”. 

The diuretic worked; the pressure went down to 130/90, a bit high but better. The arm? Still felt weakness. Why don’t you recommend a neurologist, I persisted. OK, go see Dr. Silverman in Bronxville. That was the official beginning of the nightmare. Silverman saw enough on the initial visit to recommend I see Dr. Kaplan for an EMG, at Einstein Hospital. 

Kaplan kept me waiting an hour and a half……” emergency”.  When I entered the exam room, he had two associates; another MD and a resident there to watch and learn. The muscular biopsy was needles which registered galvanic reactions on an oscilloscope. Not painful. The second test was more difficult. Electrodes were fixed to various fingers or parts of arms or legs. Various levels of electricity shocked the areas. I recoiled each time, “God,” I thought, “What must those poor patients go through who receive shock therapy…. the entire body must spasm with violent force.” 

The oscilloscope showed the wavering pattern typical of ALS, I was to learn later. I had contracted the disease, my internist told me. “Thanks, Doc,” I said, “you’ve just given me a death sentence.” 

Of course, a second opinion was in order. Several sources recommended Dr. Robert Lovelace, a top ALS honcho at Columbia-Presbyterian. He needed a bare twenty minutes to re-confirm, and suggested I come for an overnight series of tests in mid-August. 

I worked up the courage to do that, and grimly prepared for the ordeal of a shortened EMG (no shock, I insisted), x-rays, pressure, EKG, 24-hour urine analysis, and the biggie, a spinal tap. The resident was administered it was gentle and adept. 

Surprisingly the pain was minimal. The next afternoon, with all the tests over, I insisted on leaving. “But you only have 22 hours of urine”, they said. “That’s it, interpolate the rest.” I dressed and left, waiting for my daughter to pick me up. Results: everything OK, I’m a very healthy specimen, BUT, I do have ALS. 

A medication called Imuran was tried, with blood tests weekly to check white blood cell count. No problem, blood levels stayed normal. Disease was quiet with some minor weakness increasing on left side. Since I’m right-handed, I was able to do everything normally. The shower required more care in and out of the tub, but I could dress, cook, shop, and drive. I was determined to function normally as long as I could. And all the while I concealed my full problem from my family. 

Labor Day weekend was Rand’s wedding. The time was coming to level with my loved ones, but “not until after the wedding”.  I carried it off reasonably well, delivering a 10-minute blessing requested by the bride, and even attempting to dance briefly on the top deck of the yacht on which they were married. The next day I met with my children. My wife was not there. She had insisted on knowing before-hand. 

When I told her, her reaction was, “well do you want to live, or do you want to die?” I looked at her in shock. I had expected compassion; instead, I got the works of her psychic, who gratuitously had told her, “You can’t help your husband, better take care of yourself.” I understood; Mildred has her own major health problems. 

At our family meeting I laid it out: it was a degenerative and progressive disease with no known reason why it starts or whom it hits, no cure. Therapy could help to maintain muscular strength… and mental attitude is very important. I went back to New York, began physical therapy and in October bought a cane. The left leg was weakening noticeably. I started going to Columbia for PT. and OT. and become involved with their support group. The people there were very competent, and the support group’s members were most up-beat. But the future was beginning to intrude on the present. 

ACCELERATION

 By late fall I was walking slower, visits to the hospital were more difficult and the family increased their pressure for me to close shop in New York and move to Florida. The pace of discarding 40 years of work, samples, files increased. I had to get a mind-set that this part of my life was ending, and a new, more difficult one was here. From planning a three-week visit to Florida over the holidays, I allowed myself to be persuaded that once I went, that was it. The Operation Throw-out increased further. My super hauled endless huge plastic bags down to the basement. I began to sell furnishings; I would be leaving my lovely apartment forever. 

By early December I was fighting the clock and the calendar. The left side was worse, and December 20 was Departure Day. From 25 file drawers I winnowed it down to five ‘essential’ ones. UPS moved some 40-odd cartons of books, clothes, photos, and memorabilia. My friend Max helped me pack, ship, drop off books, a sweetheart. But the burden fell on my sister to pack and dispose of much of what was left. She and her husband and friends labored for two months. 

IN THE SUNNY SOUTH

 At LaGuardia and West Palm Beach airports I used a wheelchair for the first time. As my son and son-in-law met me, I broke out in uncontrollable sobs. I did not want them to see me in this condition. But from here on it would only get worse. I stayed with my dear mother-in-law for five weeks until my own apartment would be ready. They found it for me, helped me move, got a desk and bookcase, transported my files, and helped me get set-up. From a cane I moved to a 4-pronged cane, then to a walker.  My weakness continued. My attempts to live alone with some part-time help was clearly unrealistic. Within a week I knew I needed full-time assistance. We were fortunate in having available a lovely Jamaican who had worked in the area. She came aboard January 26. I have become almost totally dependent on her She is conscientious, has learned to anticipate my needs, sits in on all my therapies, medical and dental sessions, runs the household, prepares my meals, showers me, and helps me dress clean each day, and tries to keep me in good cheer. This latter is becoming more and more difficult. 

It is bad enough to lose ones’ strength in the legs so walking normally is gone. Typing with one finger is acceptable with the portable electric typewriter Mildred picked up for me. It is awkward to tear a stamp or scotch tape or use scissors and picking up a book or holding anything over a few ounces is an effort. It is awkward to scratch myself or blow my nose or clean my glasses or trim my nails or my moustache. The left fingers are curling, and the right ones are following suit. But all this is minor… 

The worst is the sudden deterioration in my bulbar area, where speech has been affected grossly. It is nasal, continuous flow of speech is impossible, many sounds like “S” and “X” and “K” are difficult. My speech is gone - within less than two months. – and in its place are the croaking’s of an angry, frustrated, impatient man who bears no resemblance to the Ben Morris who lectured for 40 years, addressed national conventions, made radio appearances, dictated a tape for one of his books, served as vice president and fund-raiser for his temple AND WAS able to make people laugh, cry, learn, or donate.  

THE UGLY PHASE: THE EARLY STAGES

 I have a tendency to choke occasionally, gasping for breath. Cupping the back helps the air passages, but it always feels as if I am choking. We have oxygen on hand for breathing difficulties, but these seem to be related to stress, caused by frustration or anger over my condition or problems of business. Lungs are clear but muscle power is diminishing. Bowel movements were affected by having foods pureed, eliminating most roughage, but we have adjusted to that. 

A major problem is mental: very simply, no matter what I do, I am getting worse, with speech the most obvious indication of my illness. I cannot handle this. Any anger and frustration spills over to my family, who get upset in turn, especially my beloved Randy who is concerned and caring. 

There is a war going on within me. The body versus the mind. Once they worked together in harmony. Today the body has turned on me, going its own way, not responding to the mind, almost defying it, because it has taken on a life of its own. 

The spasms continue unabated, harnessed to a diabolical perpetual motion machine. Day and night, for years now, this Dance Macabre – this dance of death – continues. I look with horror and fascination at this line of Rockettes dancing in precision under my skin. Now it is spreading to my soles, like tiny shocks each time. A little knowledge is a dangerous thing: the doctor said that yes, as the motor neuron cells die they cause these spasms, I am eyewitness to my own body dying. 

Where does one get the strength to “have a good attitude”? The bright spots are there: seeing my fascinating grand-daughter Rose, waiting for my grand twins to be born mid-year, having close and loving support by family, getting encouragement, assistance (a friend found me a recliner), loving letters and calls from so many who thought more of me than I did. But it is not enough. Where do I find the courage to continue as the gloomy darkness closes in?

When Ben was starting to lose his speech and having breathing issues, I was visiting him when he stated to me with his weakened whispers “would you get me medicine to help me end my life?” I remember gazing into his soft baby blue eyes for a long time. With sadness, I knew this was not possible. It was just a matter of time before Benjamin would choke, aspirate, or lose the ability to breathe. He died on November 7, 1989, of respiratory complications on life support in a nursing home in Miami, two years after his initial diagnosis.