When I was weighing the pros and cons of buying my forever home. the size of the master bedroom on the second floor was a huge plus for me. I had never seen such a big bedroom. Just the dressing room attached to it is bigger than most of the bedrooms I’ve had in my life, which were often loft beds I built myself— not to mention the 4 years that my “bedroom” was a VW van.
After my outpatient chemotherapy treatments, I had to stay at City of Hope for a couple of weeks for stem cell replacements and recuperation. When I got home, Roland— on his own and without asking me— had set up a bed in the living room on the first floor. I don’t recall if I ever spent the night in it. I napped in it most afternoons everyday for weeks. But I dragged myself up the stairs every night to sleep in my own bed in my own room. I was weak and it was a real effort. One night I couldn’t make it. I managed the 4 steps to the landing and a tremendous tiredness overtook me— that and a a feeling that my balance had gone haywire. I definitely couldn’t go up to the second floor. But I scared the hell out of me when I realized I couldn’t make it down there 4 stairs either. That night I slept on the landing, for 30 seconds worried I would tumble down the stairs but… I passed out pretty quickly.
In that same time period my balance was terrible. I had no problem swimming, but getting in and out of the pool was tricky. Worse was when I had to lift my foot to slip it into a candle. What it that? Half an inch? It was scary; I thought I would topple over. I was very frightened of failing because in the middle of the chemo treatments I did fall and passed out for several hours and when I finally woke and got an ambulance to take me to a hospital, I found out I had broken two ribs and punctured a lung.
A deeper fear overtook me when I realized that neuropathy is for life. One of the drugs in the cocktail of chemo the hospital gave me is called Velcade (bortezomib). A side effect is peripheral neuropathy, a condition that affects the nerves outside of the brain and spinal cord, causing numbness, tingling, burning sensations, general and weakness in the hands or feet that spreads over the body. It’s part of a class of drugs called proteasome inhibitors, which work by blocking the activity of proteasomes, which are responsible for breaking down proteins within cells, often leading to nerve damage (peripheral neuropathy).
When I told my friend Digby about it, she said I would get used to it. Her father had it for years before he died. I said I would kill myself if I couldn’t get rid of it. She was right; I was wrong. It still plagues me every minute of everyday… but being used to it means I’m not thinking of killing myself over it. A drug called gabapentin modulates the activity of certain neurotransmitters in the brain that are involved in the perception of pain by reducing abnormal signals from the brain that cause the pain. It’s practically free. But another drug, VIMPAT (lacosamide), an anticonvulsant, which helps keep the neuropathy from spreading and helps with the pain costs thousands of dollars a month in the U.S., ten times what it costs in Mexico, France, Turkey, Thailand and other countries where I go to buy it.
Sorry for the tangent. I meant to write about the scariest moments I encountered in my travels. Here are three, although Roland is complaining that I left out the time that I capsized my kayak in the middle of a tiger shark breeding ground off the coast of Georgia’s St Simons Island. He also complained that I left out two things that happened to both of us— once when I was stranded on a coral reef in Sri Lanka and the time we almost drove over a cliff in the High Atlas Mountains of Morocco south of Marrakech.
I started hitchhiking across America when I was 13. I hitched from Brooklyn to L.A. when I was 15 and stowed away on ship so I could make a new, simpler life for myself on Tonga. I celebrated my 21st birthday in my home-- a thatch-roofed bungalow steps from the Arabian Sea in Goa. Once, after reading about the latest deprecations in war-torn Mali, I tried to recall what the most dangerous stunts I had pulled on my travels, one having been in Mali.
But because I was swimming when I was thinking about my scariest travel adventures— and because I am really scared of crocodiles and alligators-- the first one that popped into my mind was a trip to Esteros del Iberá a swampy section of northern Argentina near where Argentina, Brazil and Paraguay all come together. They call it the Serengeti of Latin America because of the abundance of wildlife and, it’s important to forget the idea of “swamp.” It wasn’t difficult to do because the place is not only gorgeous, it is fresh and even cooler than everyplace around it. The water is so beautiful that if it weren't for the alligators, pirhanas, capybaras and anacondas, you'd want to jump right in-- as many of the folks who live around there do anyway (and have the missing fingers and toes to prove it).
Alligators-- they call them Yacare Caiman in the neighborhood, like the fella in the picture-- are something I usually go out of my way to avoid. So, for me, the scariest moment came when I agreed to go with a local in a dugout canoe for an afternoon of caiman, capybara (word's biggest rodent) and anaconda watching. And for hours that's all I saw... not anacondas, just a billion alligators and giant prehistoric rats.
Years earlier I had a run-in with an even scarier creature. I was bumming around Afghanistan in 1969 and found myself captured by a militia up in the mountains. I didn't understand a word of Pashtun at the time-- I learned how to speak it a few months later when I got snowed in and stranded in a tiny Pashtun village for the winter-- but I sure understood the universal motions and grunts for "put your hands over your head or I'll unload this Kalashnikov into it." So I did. Maybe they wanted to go for a Ripley's Believe It Or Not record, but they just had us keep our hands over our heads for hours. Eventually some Australian hippie who was with me-- and peaking on acid-- just started laughing and lowered his hands. At first the Afs all started screaming menacingly and made like they were about to shoot us. Then I started laughing and lowered my hands too. And then everyone else did-- and soon we were sitting around the campfire drinking tea with the militia all laughing away and smoking opiated hash like we were all best friends. I guess the time I was caught with 50 kilos of hash at the border between Afghanistan and Russia and got thrown into a hole that served as a jail was scary too, but the militia guys seemed more menacing.
Most recently though, Roland and I went to Mali and decided to rent a jeep and go visit Timbuktu. We spent about a month there in the winter of 2008. Since then it has been consumed by a civil war, which has torn the country in half and immersed it in bloodshed. Foreigners are routinely kidnapped. When we were there, the tourism sector was exploding. Wonderful, charming boutique hotels-- rather than the ugly soul-destroying chains which would have come later-- were popping up everywhere and a growing stream of foreign visitors were helping fuel an economic resurgence, especially in Timbuktu.
When we visited Mali we laughed at some Peace Corp volunteers we met who were prohibited by the State Department from visiting Timbuktu and the whole northern part of the country. We were lucky; that's all. No one in their right mind goes anywhere near that part of Mali these days. In fact, no tourists go to Mali anymore at all. I remember vididly that we were waiting for a couple hours for the ferry to take us across the Niger on the way to Timbuktu. The tentative-looking settlement there was a Bella one. Until 1973's epoch drought nearly wiped out the Tuareg's camels and herds, the Bella had been their slaves. In 1973, basically because the Tuareg couldn't feed them anymore, they emancipated the Bella-- although I have heard that there are still some small services that many of them still render to their former masters (like when there is a wedding or something). Anyway, this Bella settlement was all festive and bustling like all the villages we visited in Mali, when a couple of pickup trucks filled with Tuaregs pulled up to the bank of the river. Suddenly things got much quieter. Many of the little children seemed to disappear. It reminded me of a scene from Star Wars when some alien warrior people dropped by a space cafe. Anyway, the Tuaregs were pretty well-armed with guns, swords and daggers and God knows what else and they don't seem to smile much; no chatty bonjours and they certainly don't ask you for a Bic or an empty water bottle or candy. The women who had been chatting away disappeared; even the birds seemed to stop singing.