In 1979, long before I met her, my wife weighed 130 pounds. A year later, she was down to 100 pounds.
If she ate, her belly instantly developed huge and painful gas–so much that it made her look six months pregnant. Her mother was convinced her daughter was anorexic.
She went to several doctors. Eventually, finding nothing physically wrong, they told her she had irritable bowel syndrome and suggested she see a psychiatrist. They told her they thought it was all in her head. She found it hard to trust doctors after that.
She learned to be careful about what and when she ate. Sometimes it helped. Sometimes it didn’t. But it was what her life was now–and she accepted it.
When I met her in 1985, she weighed 105 pounds. She played tennis two hours a day every day in the summer. A 25 mile bike ride in the afternoon did not tax her. She was the most physically well-conditioned person I knew. We discovered we walked at the same pace. But the painful bloating and gas were still frequent–though generally secret–visitors. Diarrhea was an occasional issue as well.
I only learned of this after I took her out to get something to eat after a movie one night. She seemed uncomfortable with the idea but we were not yet at the stage where long term health issues were on the table for discussion. That changed the next day when I called her. She told me what the price of that late meal had been in terms of physical pain. After that, when we went out to eat, we went early.
Gradually, I learned she functioned on 5-6 hours sleep a night, that she suffered regular bouts of insomnia, that sometimes the bloating showed up for no other reason than it did. Some nights I would come home and find her lying on the floor on her belly: it was the only position that was comfortable. I tried to get her to go see a doctor regularly. “Why bother?” she would ask. “They will just tell me I’m crazy again.”
Menopause came early for her. But the symptoms never abated. A decade later, the flushing was still there, and the soaking night sweats, and everything else that goes with it. I massaged her feet, gave her back rubs, continued to suggest doctor visits. I would wake up at 3:30 in the morning and find her listening to the radio through the ear buds. She would tell me she woke up and could not stop thinking about a lesson she was doing the next day.
I don’t know when the diarrhea started to be a regular thing. She was very private about her bathroom habits. I do know that about three years before she was diagnosed that she never left the house without Imodium. By mid-winter of 2009, the diarrhea started nearly every morning. By that point, she was seeing a doctor, but they were both convinced it was stress-related. The symptoms eased on vacations–eased but, she later told me, never entirely went away.
Then the room started to go away when she was teaching. She said she could hear her voice, see the chalk moving across the board, but that suddenly everything seemed a million miles away. Even her students noticed these episodes. But she put off seeing the doctor: she was teaching AP Biology and the test date was fixed.
Her feet began to swell. Then her legs. The water pills they gave her had little effect.
Then, finally, they found the tumors in her liver. The biopsy explained everything she had gone through for 30 years. And worse was coming.
She developed a blood clot in her shoulder. They gave her a blood thinner she had to inject in her belly every day. Then she went on Octreotide. She had to inject that in her belly three times a day–every day. I bought her alcohol swabs with a painkiller in them. She yelled at me when I brought them home, but then thanked me after the next injection.
Her legs became more and more of an issue. She could not walk very far or very fast. The valves in her heart were failing. The diarrhea was worsening as well. We always had to know where the bathrooms were if we went out. She worried about having “accidents” in the car. Eventually she confined herself to the one floor of our house. The day before we went into the hospital, she could not get off the toilet by herself.
In the hospital, she gradually lost all control of her bowels and her bladder. She felt like an infant in a completely aware adult body.
Yesterday, I tried to explain logically why we should not treat this as a rare disease.
Today…this is what it is like to live with this “indolent” disease for 30 years. In 800 words, I have not even scratched the surface–barely given a taste.
There are 120,000 people in the US right now who have been diagnosed with this disease. There are thousands, perhaps millions, more who have it and do not know it–who are going through this the same way Jane did for 30 years.
We need more of everything: more doctors, more researchers, more teachers, more medicines, more research, more awareness, more money, more hope.
We need to stop thinking and acting like this disease is harmless because it is rare and slow-growing. We need to act with a sense of urgency.
We need to find a way to kill this thing.
