Buckskin
Big tan muscles
Silly
Loves carrots and apples
Black mane and tail
Soft, black nose, black legs
Slow, gentle
His wide back, my tight legs
I relax
I drape flat like a pancake
Slide off slowly
Back in my wheelchair
Feed Smoke his faves
Hippotherapy rocks!
God, it hurt! Sharp pain in my mouth. I thought it was my tongue. Eating was hard. I couldn’t stop drooling. Pounding in my jaw. A rash on my chin, irritated. I used a whole container of “Herbal Savvy.” I told everybody to wipe my face gently. It didn’t get any better.
Finally my mom called the doctor and my regular doctor wasn’t in, so I saw another doctor and she couldn’t see anything wrong or figure out what was wrong. But she prescribed Lidocaine viscous, for the pain, and Baclofen to relax my muscles in case the pain was from excessive tongue thrusting. The Lidocaine numbed my throat and interfered with swallowing. The Baclofen made me drowsy.
So I stopped taking that stuff. Still no better. When people asked what was wrong I would say “I have no idea.” Finally, I noticed that my lower jaw hurt more than the rest of my mouth. Time to visit the dentist. When I got there, he tested my teeth. For me, it’s not easy because I have a bite reflex and need to go under general anesthesia every time I go in there. It wasn’t easy for him either. First, he asked me if I was sensitive to heat or cold and I said “Cold.” Then, he tried to get me to hold my mouth open. He had to prop it open with a jaw spreader, which was not fun. Next, he tapped each bottom tooth with a metal instrument to see what was the problem. When he got to my number thirty-one molar, I jumped and groaned. “Aha!” he announced, “that’s it!” He told us that I had irreversible pulpitis in that molar and that I needed a root canal. I was so pissed but we set the date.
When the day came, I had to get up early and not eat or drink anything. I kept on my pj’s and put on a fluffy robe and took a blanket. When I got to the dentist the anesthesiologist asked me, “Ana, when did you last have something to eat?” I said, “Six PM yesterday.”
Then Claire, my attendant, transferred me out of my wheelchair to the dentist chair. The anesthesiologist put a mask over my nose and mouth and told me to breathe. I was out in two seconds. The endodontist did her magic.
When I woke up I was in my wheelchair. How did I get there? And I was shivering.
When I got home I was hungry so Claire made me a smoothie and I had my meds. Then I was tired so I went to bed.
About two days later I started to feel excruciating pain where the root canal work had been done. “What the fuck?” I was training a new attendant and I couldn’t eat. This made it impossible to train anybody. So my mom called the dentist and they took me in right away. Again, I didn’t have the benefit of anesthesiology. The dentist said the temporary cement crown they put on over the root canal was too big, which was causing all the pain. He would have to take this thing off my #31 without knocking me out. I put my chair in recline position and he came at me with this scary tool. No way could I open my mouth! Finally I relaxed enough to open wide and he pulled it out, “presto!”
My birthday was that weekend and I was going to spend it at a hotel in San Francisco with my family. Thank god I didn’t have to spend it in pain.
Two weeks later it was time for the gold crown, another appointment, more fasting, and another general anesthesia. I had to get up and not eat or drink anything and it was in the afternoon. When I got there they were working with another patient and I had to wait almost an hour. Boy, was I hungry! I heard them from the waiting room and they were saying that they had to pull out her #31 molar! Jesus!
When I finally got seen, the anesthesiologist asked me the same questions he asked me before. I had 7up only, at 10:30. This time my parents transferred me to the dentist chair and I still don’t know how I got back into my wheelchair.
Now I have new gold in my mouth. I’m worth $900 more, for what it’s worth.
In the summer of 2006, my first visit to a cemetery was almost my last. In 106 my dad’s family came from the Ukraine to America. One hundred years later, we had a family reunion in the Catskills in the mountains of New York to celebrate the anniversary of their coming to Ellis Island. First of all, I had to bring my manual chair because that’s what I use when I travel by airplane. In fact something always happens when I travel by airplane. For one thing, the airline completely lost my chair in England while we were on our way to Amsterdam. Between Amsterdam and Denmark, where I was going to give a talk at a conference, the next airline broke my footplate, so these random Danish guys built me one out of wood so I could present my talk. Another time, the airline broke my Delta Talker mount somewhere near Baltimore and I couldn’t communicate a thing until my mom got an engineer to come to our hotel and fix it. So when we went to New York, I took my manual chair, even though it was kind of top heavy.
One hot day my parents and I went to the family cemetery in Elmont, New York, to visit and pay respect to our ancestors. My dad’s family has a whole plot there. We were looking at the gravestones and I was remembering my grandmother and my aunt and how much they loved me, when all of a sudden, my chair started to tip over backwards like a teapot pouring out water. I thought, “Am I finally going to meet my grandfather?” Then the chair hit the ground and my head missed a grave by one inch. My parents were definitely scared to death and screamed, “Oh my God, Ana!” As I hit the ground I heard something crack. “Was that my head?” It was the food processor that I always carry in my backpack. Thank God it wasn’t my head. Then my dad finally pulled my chair up.
When I got back home, I got my manual chair fixed (they lowered the center of gravity). So the next time I visit my ancestors, it won’t be the last thing I ever do.
October 20, 1991
On that beautiful, windy, fall Sunday, my attendant Dorothy and I were out on Telegraph Avenue looking at the street vendors making jewelry. Suddenly it became dark and we noticed people looking up. We also looked up and then we heard sirens. Then we saw a cloud of smoke and flames coming from the hills. I got so scared that I couldn’t look up anymore, so we went home. When we got there my mom told us that there was a fire in the Oakland Hills. My parents called our friends Alan and Laura and Jan because they lived in the hills and asked them if they wanted to stay at our house. Alan and Laura slept in our garage with their two cats, Sherman and Snoozer. My dad is allergic to cats and Sherman hated him anyway. Jan slept in my computer room on a lounge chair. She used a wheelchair and didn’t have anywhere else to stay.
My bedroom was upstairs and I could see the fire from my window. It made me so sad to think that people were dying there that I made my mom pull my shade down. I was afraid to sleep. Later I found out that twenty-five people died in the Oakland Hills fire.
The next day, school was closed. I hung around the house and watched TV. My mom started packing in case we had to evacuate. I wanted to pack my letters from Guatemala that spell my name. (I couldn’t find them anywhere else?) But we found out that we didn’t have to evacuate. And I still have the letters!
It was our friend Laura’s fortieth birthday and 
she had bought a chocolate cake at Ladyfingers Bakery, planning to eat the whole thing on her birthday. But when the fire came she left it on her kitchen counter. By Wednesday the fire was under control and they were letting people back in to look for their houses. Alan and Laura didn’t know if their house would still be there, but it was, and so was Laura’s chocolate cake. And so she ate the whole thing.
The next day school was open and everybody was talking about it. My mom prepared an emergency kit but she didn’t pack my letters.
Love is the word to describe him. He was a special black lab named “Shadow of Love.” My parents rescued him in 1991, when he was one and a half. His previous owners kept him in their garage and gave him plastic bottles to play with. But when we brought him home, Shadow did not look back. He knew we were his family
.
Shadow had to adjust to living in a house with people.
Once we were having a nice family dinner and Shadow jumped onto the kitchen table and tried to eat our birds, Blaine & Antoine! One night while we were all sleeping, Antoine somehow got out of the cage and Shadow slimed him to death. Poor thing!
When he first took a look at me in my wheelchair, he didn’t know what to do. But little by little he got used to me. This dog was not dumb. He even learned to respond to my DeltaTalker. Whenever I would say, “Shadow, come!” he would do just that.
He really hated a neighbor’s cat called Little Bittles. Once I was talking about the Beatles and he thought I was saying Bittles. He charged at our glass door!
Even though we had him “fixed” Shadow kept getting into fights. The fight with the pit bull put his leg in a cast. His ear was almost torn off in another fight.
God, he had the weirdest appetite. He was a retriever, so of course he always had something in his mouth. Also he was interested in my technology. He chewed up my DeltaTalker cables! Not to mention, my braces for my feet. He even chewed up the tie downs in my van so my wheelchair started to tip. He was getting out of control! My dad decided he needed help. He worked and worked with him so he could become “normal.”
That did not quite happen. There was some question about his sexuality. You might say that he wanted my dad to have his puppies. During my high school graduation party, my male teacher, my sister’s boy friend, and my dad were all standing against our kitchen counter when Shadow decided to hump all three men! They were all laughing!
Shadow loved going out with Dad. He took him everywhere, even to the supermarket. He loved going to the Cal campus and jumping over the creek. His favorite thing was playing in Willard Park and he trained Dad to give him water from the fountain. Once dad couldn’t find him and someone told him Shadow was in Willard swimming pool, doing laps!
Everyone thought he was something special, so we kept a list of words people called him, such as “handsome, muscular, smiling…”. This was our list of “shadjectives.”
When Shadow was about to turn 13, our cousin Benny decided that Shadow should have a Bark Mitzvah. He didn’t learn the Torah, but we had a nice lunch at the Bateau Ivre.
Over the years he started losing his hearing and had poblems walking. I now had my own apartment, and every time I saw him, he seemed older. My parents tried different things until one day, he couldn’t get down off the couch. They knew they would have to have him put to sleep. When my mom told me that, I broke down! He was my brother! I came over to say bye to him.
The vet came to the house and the nurse gave Shadow treats, and then the shots, as he lay on his bed. He was chewing a piece of jerky when his heart stopped. My dad keeps his ashes in a little chest by his desk.
I will always remember my brother, my Shadow of Love.
It was the Fourth of July, 2007. My attendant, “Nina,” decided to go out for the day to a party. She put me in my manual chair because the party was not accessible. She left me on the porch and went to get something from the house that she had forgotten. But she also forgot to put the brakes on my chair. Out of nowhere my chair started rolling towards the front steps. I thought, “Fuck!” Then, “BANG!” My whole chair crashed down two steps and I hit my head on the concrete. My forehead was bleeding and my glasses were broken. Fortunately my wonderful communication device saved my life by breaking my fall. A neighbor happened to walk by and helped me up, still in my chair. “Nina” ran out and wiped the blood from my face. I was crying and screaming. She said, “I need to take you to the hospital.” So she called my parents, who were hiking in the redwoods with Ziggy. She told them to meet us at the Kaiser ER. Then she drove me to the ER in my van.
When we got there, I was seen right away. I must have looked terrible, like a bloody mess. They lifted me out of my chair and put me onto a gurney. My parents walked in and I started to cry again. A doctor came in and looked at my forehead. First they cleaned the wound and it stung like hell. My parents held me down while the doctor tried to numb me and put in stitches – I don’t remember how many. My mom noticed that my tooth was chipped and that I would have to get it fixed.
After an hour I went home and ate some soup and went to bed. Both my sisters 
and my nephews came to see me. Vicky brought me ice cream (chocolate, of course).
Once I felt a little better, but I still couldn’t wear my glasses, which I need for my communication device, I tried attaching my head pointer to my headband that had penis antennae. Isn’t that part of everyone’s adaptive equipment?
I was kind of able to communicate like that, but not quite ready for public speaking.
“Nina” told people that she had put the brakes on my chair, but it would not have rolled if the brakes had been set. In fact, the brakes had just been fixed. She was fired soon after that.
Man, those were some Fourth of July fireworks!
One beautiful day in December my parents and I were on our way to a Chanukkah party in Cotati. We had just gone through the toll plaza to get onto the Richmond Bridge, when my van started jerking. My mom told my dad, “Pull over to the shoulder and set the flashers!” My mom got on her phone and called Triple-A. They couldn’t come to the bridge, so they sent Cal-Trans. After about twenty minutes, a guy in an orange truck pulled up behind us and pushed my van across the Richmond Bridge to the first exit – the San Quentin exit. We called Triple-A again and told them that we had to get back to Oakland and that there was a person in a wheelchair in the van. They told us we had to wait two hours. After a while my dad had to pee. My mom told him, “There’s a building over by the water. Why don’t you go there?” Dad said, “Oh, that’s nothing,” but he went anyway.
When he returned, he said, “It’s the Marin Rod and Gun Club! They let me pee there!”
We had to wait so long in the van, that we started playing games like “Twenty Questions.” I was up first. My mystery was really hard; they got it in about three seconds: It was Max!
When the Triple-A truck finally came, the driver said that he couldn’t take me. What? After we told them that we had a person in a wheelchair? What could we do? My mom suggested that dad should go back to Oakland with Triple-A and the van. Mom and I would take our chances at the gun club and try to get a ride from there.
We crossed the road and tried to get to the entrance but you needed a secret code. Finally a guy came out and let us in. It was like a sports bar inside. There were dudes drinking beer and watching football on TV and betting. They were all white guys named things like Andy, Mike, Bill, Bob, Dick, and Tony. The bartender (Andy) offered to call for a ride for us. He called about four different companies before he found one that could pick us up – after six o’clock – and it was now about two.
By now I was hungry. We should have been having latkes in Cotati. I thought “What the hell am I going to eat? All they have here is chips and beer.” So Mike said he was going to go out for pizza and would bring us whatever we wanted. We ordered a slice each of cheese pizza and he brought them in. Andy gave me a glass of cranberry juice and gave my mom a glass of wine. What sweet guys! My mom had brought my food processor, so I enjoyed that pizza.
One guy, Tony, became interested in my communication device, so I showed him how it worked. He was so impressed that he explained how I accessed it to everybody else in the room and to new people who came in. Soon, I had to go the bathroom. My mom cannot take me by herself anymore. So she asked for help of anyone who was willing to do it. Tony volunteered. Fortunately the bathroom was accessible. It was challenging and Tony covered his eyes while he was transferring me, but it was successful.
Finally, after six, our ride showed up. The driver walked in and asked, “Can I do duck hunting here?” Everybody told him, “We don’t hunt. We don’t have guns.” Some gun club! I felt better about being there.
We got in the van and it was decorated with Christmas lights. What a way to spend Chanukkah!
On December 3rd, I was at La Peña in Berkeley, having fun dancing. At the same time, at the Ghost Ship, an Oakland warehouse building, people were listening to some electronic music. About the time that I was doing the mambo, the Ghost Ship caught fire. The next day my roommate told me what happened. I thought, thank God I wasn’t there. I was devastated. Right away I got on Facebook, and I saw notices about people who had died in the fire. I saw the name of someone who graduated Berkeley High School with me. I thought how sad a person my age died so tragically.
The next Monday my roommate asked me if I wanted to go to a vigil
that night to commemorate the victims of the fire. My attendant,
“Queenie,” acted as if it were not important. She took a long time to
feed me, as if I had no place to be. First she complains about taking me.
Then she takes a long time to find Lake Merritt, which I can
practically see from my house. Next she calls my roommate to ask
where she was. My roommate said, “You’ll run right into it. Look for a
big crowd of people. Pull into Trader Joe’s. I’ll meet you there.”
When we got to Trader Joe’s, my roommate and her friends met us.
“Queenie” started acting really strangely. She said she missed a
meeting and that it was my fault.
A week later, after a wonderful concert, we were out to dinner with my
roommate. She asked, “What are you going to do about ‘Queenie’?”
My mom said, “What do you mean?” My roommate said,
“She was drinking the night of the vigil. Didn’t Ana tell you?”
Only then I realized that “Queenie” was drunk that night and that was
why she was acting strangely. I don’t know why I didn’t say anything.
My roommate said that she and her friends said that “Queenie” reeked
of alcohol. I don’t know why I didn’t smell it. The next morning I woke
up in a panic, flailing and screeching. My mom was there because
“Queenie” was due to start her shift at 7AM and she never got there in
time. My mom asked me, “Ana, do you want to fire ‘Queenie’?” With
my whole body, I told her “Yes!”
After breakfast I wrote a long email to the company that provides my
attendants and they fired her right away.
Now I am more aware of who comes into my home. I’m trying to be
more aware of behaviors that might put me in danger.
Last month I went on a cruise on the Grand Princess, which kind of reminded me of the Titanic. On Saturday, when I first got on I was overwhelmed by the amount of people who crowded around me. Usually I’m okay with people near me but this was over the top. People touched my communication device, which I hate. Some people seemed sick and out of it, repeating phrases: “I’m scared.” “I’m tired.”
The next day, some of the staff from the agency that provides my caregivers wanted to give Claire, my attendant, a break, but the fill-in attendant got seasick and she couldn’t work until Friday. She kept saying “Never again.”
It was hard to find things to do when we were in port because they couldn’t find anything that was accessible for me off the ship. So I hung out on the deck. I watched movies, talked to people, danced, and shopped. I spent a lot of money. There was a photographer taking pictures of people. I spent a lot of money on pictures.
People tried to take care of me. Claire showed a woman who worked for the agency how to feed me but she wasn’t paying attention so she fed me too fast. She rushed Claire away so I didn’t feel safe.
The last night on the ship I felt nauseated at dinner time. Dinner was beef stew and fettucine. Towards the end of the dinner I started to cough really hard and for a long time. I felt like I was choking on the food. All of a sudden, I threw up everywhere. Claire and Ayesha rushed me down to the infirmary, where they put an IV in me, took some blood, and gave me medicine for nausea. I spent a lot of money there and I hope to get it back from Kaiser.
Overall, the trip was fun: I got plenty of oxygen and I got to look at the ocean. The food was pretty good, aside from the beef stew and fettucine. But the trip was not what I expected and it made it impossible to trust the agency. I won’t be going on another big cruise without my family.
Trust
Trust is being able to rely on people and especially knowing that they will be there for me. I had to learn to trust from an early age because I have been disabled since birth and I’m dependent on other people to take care of me. My trust has been betrayed a lot.
Some people I always trust. My family has always been here for me, and I know they are going to take care of me. When I was a baby, I didn’t have much to worry about. My parents took care of my needs. When I got older, my parents had to hire people to take care of me because they had to go back to work. My parents had to trust the people they hired. Sometimes these people were not trustworthy, and they had to be fired.
By the time I was fifteen, I had to learn to trust. It was difficult for me because I was learning to speak up. I had to say “I don’t like what you are doing,” and I had to trust that I would be safe. For a while I trusted an attendant who I felt completely safe with. I could tell her what I liked and didn’t like and she asked if I was OK. After a while things changed. I started noticing that she would try to control me by planning my life. I couldn’t speak up because she took over. If I said, “I don’t want to do this,” she got angry, and that made me feel unsafe. So I stopped speaking up to her. This went on for years. I couldn’t trust her anymore, and I didn’t feel safe either. I had low self-esteem. I finally fired her, and she had no idea why.
I trusted my boyfriend for nine years until he betrayed me. He wanted to move in with me and not contribute to my rent and other expenses. He used my attendants and didn’t pay them. A few of my attendants felt uncomfortable taking care of him, and I never trusted that he would take care of me. I had to break up with him.
Some of my attendants had access to my debit card. At least two of them used my card to make purchases and take cash out of my account. I found out who was doing that in the past but I don’t know who the latest thief is.
Some people I haven’t trusted from the beginning. If I feel like they are invading my personal space, they won’t last long with me. Some people tried to get into my business and asked me about my love life. That made me so upset that I fired whoever did it. Someone else told me that I needed to believe in Jesus, and it broke my trust right away. If someone touches my communication device, I don’t trust them to respect me.
Now it takes a long time for me to trust people. People have to build trust, and I’m happy to say that I can trust my therapist and other professionals that work with me. When people start working for me, I’m watching them to see if I can trust them. I’m still not sure about who to trust and I always have to trust myself to be careful.
Last year I woke up to an empty house. I heard my door opening. It was my mom. I thought “What the ____?” My mom told me, “Nobody is here! I had a feeling something was wrong.” I had been left alone by someone I trusted, let’s call her “Gigi”. I was so upset that I couldn’t move. My mom called the agency and demanded that this person be fired. The agency said “We aren’t going to do that.” Mom said to my case facilitator, “You don’t fire people who leave your clients alone?” A few hours later another attendant, “Claire,” came to finish the shift. I really loved “Gigi” and her family, and I trusted them. But since that incident I have lost trust in all of them and I don’t want to see any of them again and I have been angry a lot.
Since then “Claire” and I became really close. She takes me on adventures. For instance, last Saturday we went to Treasure Island and to Pier 39 in San Francisco. I trust her with my life.
For the rest of my life I am going to have to trust lots of people, but it still hurts when somebody lets me down.
Ana's Blog 