My parents told me the medicine for my asthma wasn’t available in the US, so we had to go to Mexico. My memory isn’t clear, I don’t really remember the first visits to the cancer clinics in Tijuana. I don’t remember if my mother went with us. We went to two other places before we found the one.
I remember we visited two or three times before Dr. Farías started what would become my life five days a week for 10 months. Daily there was lots of bloodwork, two to four large intravenous injections, two shots in my butt muscle, an intravenous bottle, and an hour inhaling some gas.
The nurses all spoke to each other in Spanish. It was weeks before I let them know I understood them. The nurses were nice to me, but none of them got friendly. I can really understand that from an emotional perspective
I didn’t like Dr. Farías much, but I really didn’t see him that often.
I don’t have the memory of the treatments being especially painful, but it was uncomfortable and it took all day. However, there was this thing about the needle sizes. When they used short thin needles in the arm, it stung a bit. The larger needles felt better. The smaller needles were better for the muscle shots. The medium needles weren’t much use at all. It’s possible that I lost my hair, but I don’t remember. But pictures the next summer showed me with a crew cut
After a couple of weeks I asked if they could give me the IV at the same time as the gas treatment. I got the gas in a chemo room, where a chemo chair was. They stored the gas tank, which they called David’s bottle, behind the door, so they sat me behind the door as well. Not so much fun. I asked them to put the tank in the opposite corner by the window, more room for the IV stand, and I could talk to whoever was in the chair.
They also treated me for the birth defects. The result was me going through early puberty at 8 years old. Every endocrinologist I’ve talked to has said that saved my life. Incomplete puberty continued until my 40s. More on that later.
You can imagine the mood of the patients in the clinic. Most of them were from the US. They had been told that there wasn’t anything else that could be done, and they could go home and wait to die. Tijuana was their last hope.
Not fertile ground for frivolity.
The treatment in Tijuana worked, I am here. I am not sure how much of my lifetime bad health is a result of the DES, leukemia, or the treatments in Tijuana. But I’m here.
I tested positive for tuberculosis at about age 13. Took lots of pills.
Decades later, the last couple of times I was tested, I no longer tested positive.
Yes, I’m sure.
My eyes have played a very big part in my story, my experience of life, and my expectation of the future. My mom did know that I couldn’t see, that I was not seeing things that other people could see, and that I had to sit much too close to the television to see.
She told doctors about it.
They gave me the Big E test, the little kid eye test. There all are Es on an eye chart where the other letters are on an adult eye chart. The Es are pointing in different directions. The child is asked to point with his finger the direction in which the E is pointing. I couldn't see these variations, but I noticed that hints were given by the test giver. I saw this later when I worked with kids who could not see. The adults unconsciously gave clues to the right answer. So, I got them right.
When I got a little older, they told me I would be taking an eye test. A test? I studied for it. I memorized the alphabet eye chart, the Snell chart. I passed.
When I was 9 years old, we were in Mexico. My mother took me to an optometrist in Guadalajara. They used a different eye chart. When they asked me to read the third line and I confidently read it off, and they all looked at me and they looked at the chart, and then my mom walked up to me and slapped me.
Today, thinking of that chart, I still have that first big E memorized.
The optometrist gave me glasses. It was such a surprise that there were wires between the telephone poles. It had seemed to me that all the adults had memorized all the street names. No, there were signs saying the names of the streets! I remember being fascinated how in Mexico the street signs were pretty consistent. But then in Texas, they were very different, and in the states between Texas and LA they were very different again, and then in Los Angeles the street signs changed in different cities. Amazing.
Within a year I had bifocals.
At the age of 16 that optometrist gave me a very extensive eye examination. He told me that I would probably be blind by the time I was 30. Lattice degeneration, the breakdown of the retina from the outer edges. The damage looks like a lattice, or ladder.
A talk with an ophthalmologist was needed. A few phone calls and one was often called the best in town. Fortunately, he was nearby in Lincoln Heights. Dr. Dupont. A great doctor, and also one of the few saints I’ve met in my life. He was one of the founders of Doctors Without Borders. On his staff was Dr. Roebuck, the man who invented the first almost non-invasive glaucoma test. Before his test they had to clamp the eye open and put a rubber cup directly on the eyeball.
I went in alone for the first appointment. I had a great talk and a detailed examination with Dr. Dupont.
He said my eyes were healthy, but too bad I couldn’t see.
My mom wanted to go with me, and she complained loudly how I kept turning off lights and how she and my brother needed to have the lights on. Dr. DuPont took a few beats, and told her that she should be worrying more about the son who needs the lights on.
Interestingly, I’ve had this tug-of-war with people all my life. I like a dark room. I think only my son-in-law Joe has ever asked if my eyes were annoyed or hurt by the lights. Yes, my astigmatism is so bad that the glare bothers me. Sometimes to the point of a certain kind of pain.
Sympathy and empathy are lacking out there.
As I'm writing this, it is embarrassing that it occurred to me for the first time, my mom's emotional reaction to my upcoming blindness additionally influenced her attitude toward me.
I asked Dr. DuPont about the care and feeding of my retina. He told me that there was no treatment other than suturing the retina as it tore. “Was there was any other way to take care of this?” He said that there was a wives tale, a folk remedy, that there was something that many people did, but there was no science behind it. It was to drink carrot juice. So from 16 years on, I have been regularly drinking carrot juice.
When I was about 45 I slacked off carrot juice, and my retina tore
.
Many years later there was even more eye news. You’ll see it later.
Migraines! They were very bad. (if they weren’t that bad we would merely call them headaches). Often, I could tell one was coming. Sometimes my friends could tell one was coming because my left eye would go blind and start drifting. But more often I saw shimmering. Kind of like light dancing on water. But not.
One afternoon, driving down Whittier Blvd, I saw the shimmering, and it was very strong.. I knew what was coming, so I turned on McDonnell Ave, and found a parking space and got in the backseat of my van and waited. The migraine hit hard. I stayed right where I was.
It was so painful. The hours passed. I pissed myself. A large passing car would hurt. Nighttime came. The darkness was a relief on my eyes, but the bolt being driven by a heavy sledgehammer through my skull was still a tad annoying. Even the slightest move made it worse.
The morning came, my bowels moved. But I couldn’t do anything about it. Just the movement of my body shitting made the pain worse.
About 10 in the morning it faded away to merely painful. I had a change of clothes in the van. I went home and cleaned up.
That headache was a turning point and more attention was paid to the migraine triggers. One trigger was red wine, and anything cooked in red wine, especially mushrooms. Another was pickled herring. I do love pickled herring.
Keeping away from triggers, it’s been years and no full migraine.
A year ago I bought a jar of pickled herring, it’s still in the fridge.
About 20 years later, whenever I drank red wine, I immediately got a hangover. Apparently, I’m one of those people who can’t metabolize the alcohol of red wine.