December 31st, 2019

December 31st, 2019

Happy Thoughts

by Rosa Jordan

My daughter is screaming. Again. Not exactly every hour on the hour, but more or less. Sometimes seventy minutes go by. Sometimes only fifty. Her husband and I lift her from the bed onto her feet. The scream turns to moans, then a groan, until the agonizing leg cramps subside and she mumbles, “Thank you.” We help her lie back down and she falls into an exhausted doze until the next attack.

It wasn’t like this ten months ago. Back then she was a veterinarian. Dr. J, as devoted clients called her, had 33 years of experience in veterinary medicine, plus accreditation in acupuncture, nutrition, and laser therapy for animals. Then, one day in June, she fell. Several days later, she fell again. Then twice more. The first time she injured her knee. Then her wrist. Then her shoulder. Then it was face down on a gravel walkway. Serious falls for no apparent reason, when she was merely standing or walking, led to a visit to a neurologist and the usual battery of tests. The diagnosis: Amyotrophic Lateral Sclerosis (ALS).

At first the pain—apart from the battering her body received from those falls—was psychic. But Dr. J was strong, smart, and hopeful. Her medical background proved useful in evaluating potential (although no proven) cures for ALS. Diet, exercise, Chinese herbs, acupuncture, stem cell therapy—she promptly tried them all. She believed that some of the therapies might work, if not to cure the ALS, at least to give her a longer life.

Meanwhile she began checking off things on her bucket list. She and her husband drove to Canada to see autumn colors. She flew to Florida to see her godparents, take an airboat ride through the glades, swim with dolphins, and visit Harry Potter World. She, her best friend, and I traveled to Cuba, where we attended the International Ballet Festival and she was boosted from her wheelchair into a horse-drawn carriage for a ride through Old Havana. Back home in California’s wine country, she wheeled through the area’s many festivals with friends and used the Y’s pool for the disabled to exercise.

“I don’t want sympathy,” she told us. “I want happy thoughts. If you catch me crying, don’t ask what’s wrong. Just tell me a joke.”

We did. We do. But the terrible muscle cramps, when they began, were no joke. She tried everything from massage to acupuncture, cannabis to calcium, laser therapy to TENS, muscle relaxants to Mexiletine, magnesium to pickle juice. Weeks went by with no respite from the cramps. A good night’s sleep became a distant dream.

Eight months after the initial diagnosis, Dr. J received a home visit from Kaiser’s end-of-life specialist. The doctor said that based on Dr. J’s decline in muscle activity from 43% to 21% in the past three months, she had an estimated six months to live. The purpose of the visit was to explain an end-of-life option popularly called the “death cocktail.”  Should Dr. J request it, the doctor would give her a prescription for three drugs which, taken together, would end her life. However, by California law, only the patient can administer these pills. Someone else may hand her a glass of water, but she must put the pills into her own mouth and swallow them down. As most ALS patients eventually lose the use of their hands, as well as the ability to swallow, the doctor reminded Dr. J that if she planned to take those life-ending drugs, she shouldn’t wait too long.

Dr. J listened with apparent calm, possibly because during her decades as a veterinarian, she had counseled hundreds of clients regarding end-of-life options for pets. She thanked the doctor for the information but said she wasn’t ready to make use of the death cocktail on offer. She would, however, appreciate it if the doctor could prescribe a medication that would mitigate the excruciating nightly cramps which, for the past three months, had prevented her from getting a good night’s sleep.

“I’m sorry,” said the end-of-life specialist. “But that is not my area of expertise.”

Afterwards I asked Dr. J if she wanted to talk about it. She said, “No, and I’m not in denial. I just prefer to have happy thoughts.”

In spite of having to be helped to stand every hour, shuffle a few steps for five minutes, then do it again an hour later, not to mention pain she describes as “nails being driven into my legs” when cramps hit before we can get her onto her feet, she continues her quest for happy thoughts. In her wheelchair, she browses local nurseries to choose flowers for their deck. Each evening she and her husband watch an episode of Game of Thrones. Friends come over every Sunday for a movie night on television. Neighbors, former employees from her vet clinic, ex-boyfriends, and others visit. These activities and friendships help her stay afloat on her self-constructed life raft of happy thoughts.

By keeping as active as her failing muscles allow, she manages fairly well during the day. But come bedtime, when it would be nice to slumber quietly for an extended period of time, the devastating hourly cramps make happy thoughts—indeed, all thought beyond the pain—impossible.

In desperation, I went online to see if there was anything for the relief of leg cramps in ALS patients that we might have overlooked. I found studies indicating that some ALS patients had been helped by quinine. Quinine was something Dr. J had not yet tried, so off she went to her primary care physician to get a prescription.

“I’m sorry,” the doctor said. “But quinine has been shown to have serious side effects in about 1% of those who use it. US law permits us to prescribe it only for malaria. Not for leg cramps because they are not life-threatening.”

While I ranted about laws that allow a doctor to prescribe a death cocktail to a patient with a terminal illness but do not allow that same patient to get a prescription for a drug that might alleviate excruciating pain because the drug might be lethal, Dr. J calmly sent a text to her local pharmacy. Using her veterinary drug license number, she ordered quinine for her dog.

When her husband returned with the prescription, she grinned. “No need to give these pills to our dog, since dogs don’t get malaria. I guess I’ll have to take them myself.”

Studies have shown that quinine does nothing to reduce cramps in 75% of those who try it, and for the 25% for whom quinine is effective, it takes up to four weeks. So Dr. J’s smile wasn’t because she was expecting instant relief. She was smiling because having in hand something that might relieve the pain had given her yet another happy thought. As with many happy thoughts, its main ingredient was hope. Not hope for a cure or something to extend her life. Those hopes faded months ago. Simply hope that a way can be found to minimize the pain, making it possible for her to fill the days she has left with happy thoughts.

Rosa Jordan grew up in the Florida Everglades and attended university in California and Mexico, as did her daughter. She lives in the Monashee mountains of British Columbia, where she writes novels, travel-related nonfiction, and children’s books. www.rosajordan.com