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Healing Allie

I remember when I first met Allie, an abandoned racehorse who was rescued by a kind old man.  He took care of her until Fran, a physical therapist, adopted her.  She had to feed her and train her to become a therapy horse. When Fran first introduced Allie to me, she was so gentle and loving. She knew how to work with me. But she kept getting hurt. One time she had a nasty infection on her back and she still knew who I was. I thought to myself ‘She’s hella smart.” Whenever Allie was hurt, I would ride Smoke, the horse I ride now.

One day I went to Cotati for my riding lesson.  Fran told me she was going to have to put Allie to sleep. She kept her alive so I could say goodbye. I broke down in tears. She was my girlfriend and warmed my heart. I made a movie about her, called “Healing Allie” before she died.  Allie got healed, and she also healed others.

Now I ride Smoke.  He’s a fun guy but I’ll never forget Allie. I sit up straighter and taller because of her.

Ana & Allie4

Poetry

MAX

My nephew is driving me around in circles.

He knows what he’s doing.

I get dizzy.

Max is playing baseball with my dad.

My dad can’t throw.

I laugh.

MAX

My nephew is driving me around in circles.

He knows what he’s doing.

I get dizzy.

Max is playing baseball with my dad.

My dad can’t throw.

I laugh.

Trust

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 am disabled since birth and I’m dependent on another person 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, they 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 the people they hired 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 she changed. She started to 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 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 am still not sure about who to trust and I always have to trust myself to be careful.

 

 

 

 

Zoloft Withdrawal Hell

I’ve been taking anti-depressants since I was eighteen. I had a nervous breakdown in high school, just before I graduated. They calmed me down and helped me think clearly. But I’ve always been kind of depressed.
This past summer, around the end of June, my staff did not refill my prescription for anti-depressants. And I had no idea what was happening to me. One night I woke up pounding the wall. I was wired. The next day I started texting my mom with my feelings. Around mid-July, my mom was at my house and she noticed that there was no Zoloft in my med box. I had cold turkeyed off Zoloft! I had all the symptoms of what they call “discontinuation.” In the fall I took a college class but I dropped out because I was so depressed that I couldn’t concentrate in class or on my assignments. I found this website and it explains what I was going through. You can get an idea from these texts that I sent to my mom. Her comments are in parentheses:
06/27/15
I feel a little sick. I’m upset @myself. I’m frustrated that I can not write. Tummy hurts.
Four different symptoms and I didn’t know what was going on.

06/30/15
[past caseworker] lifted my shirt during a meeting. I absolutely hated her.
Hateful feelings. Not on the list, but that’s what was happening.
07/03/15
To be fair, last year sucked.
Feeling negative about everything.
07/06/15
Going to [past agency] was the biggest mistake. I hate [past agency director].
Blaming myself. Blaming the director of an agency.
07/10/15
Confused. About life.
Lost. Doubting my self.
I feel nauseous. Nervous.
Classic symptoms.
07/19/15
Everything turns out wrong.
Negative again
I’m sorry for hitting. I honestly have no idea what was going on.
Irritable

I’m going backwards. So scary. Maybe I could volunteer @ da aspca.
(Mom: What do you mean about going backwards?)
In time. (Mom: Do you mean like watching kiddie shows on tv?)
Kind of.
(Mom: or your behavior?)
Yes.
Totally freaked out.

07/20/15
I’m in shock – about last year. I almost died. I’ve forgotten how to live.
Am I supposed to be dead? It felt like it. I will never forget it. It will always haunt me.
Reflecting on my stay in the hospital a year ago.

07/21/15
Ha – I’m alive. Pretty funny. (Mom: Yeah?)
Not funny “ha ha.”
Same.

07/28/15
I can’t sleep.
I’m nervous about camp. I don’t understand. I was pretending to trust.
I can’t rest comfortably. Come down.
I feel really off.
Starting to crash but still aware of my feelings.
I don’t feel right (Mom: In what way?). I don’t know. I want Vicky.
I don’t know how to speak up as well.
I want [former attendant].
[past agency] was the worst mistake I made.
I feel funny.
I want to do something with Max.
I wasn’t aware. Blaming myself. Grabbing at reality – Vicky & Max.

07/31/15
I feel horrible about [past attendant] – [past attendant] set me up. [past attendant] forced me to text [past attendant].
Confused thoughts.

08/01/15
I spoke up & I failed.
Negative about self.

08/02/15
Can’t sleep…
I think it’s important to talk about “Elvis” – call him a different name. The man was a big part of my life.
Sometimes I was in there.
[past agency] didn’t let me keep in touch with my attendants.

Come down please.
I want to stay with you.
Attachment to mom.
It’s important to recover my past.
Missing the past. I had lost the past.

08/04/15
I feel like it’s my fault that [attendant] quit, even though I know it’s not.
Blaming myself. My mind is still functioning.

O8/05/15
(Mom: How do you feel today?) – Restless.
Classic.

08/12/15
I would have died if Vicky had not run.
Hospital again. Vicky came and stayed with me until my parents got back from NY.

Feel sick, nauseous. Tummy.
More classic symptoms.

08/19/15
I’m extremely tired. I want a job.
Just feel awful.
Out of it. Confused.

Dr. [MD] says she can’t help me. (Mom: You asked her?) – She’s not an expert.
Feeling negative.

– I want [past agency] to shut down. (Mom: Don’t waste your brain cells.)
Negative.
I can’t sleep.
When [attendant] was working with me, I still wasn’t happy.
Negative.

08/21/15
I’ve made a lot of mistakes but this was the worst – Trusting [past agency director. This was serious. This was no boo boo.
Blaming myself and others.

I feel like you are blaming me for a lot. Not fair. (Mom: I thought she was like you. Boy, was I wrong about that!)
Blaming my mom.

I want to hurt her. I don’t say that very often.
Violent feelings.

People want me to be too independent.
Afraid to be independent.

08/25/15
Am I still with [past agency]? (Mom: No, why??) – It sure feels like it. (Mom: In what way?) – Threatened.
Scared of being hurt.

08/26/15
[past attendant] made it hard to thank people.
Blaming somebody else.
…My chest hurts.
Anxiety

I had to go through this for two more months. My MD thought I would get over the “discontinuation” symptoms soon. But it just didn’t stop. Then, my mom’s friend told her about a homeopathic doctor, Christine Ciavarella, who had helped her with severe depression. I went to the appointment and told her about myself and what was going on. I don’t remember the details because I was in the deep depression. She gave me a homeopathic remedy, “emerald” and suggested that I start taking a low dose of Zoloft, half the dose that my MD prescribed. I have been feeling more like myself. I’m interested in life. I’ve stopped thinking negatively about myself and the past.
But it’s not just flowers and fluffy pink clouds. Recently I was endangered by one of my attendants that I really trusted. Now I can say that I hate her. I felt haunted by ghosts from the past. Now I am back to real life and I’m ready to take charge.

School Daze

Leonard Flynn

I was three years old, in pre-school at Leonard Flynn Elementary in San Francisco. My family and I were on an airplane coming back from New York. I had my language tray at my seat and my mother had a slate. She wrote the word “Mom” on it and asked me, “Do you see this person on your tray?” I pointed to her picture. She was thrilled and I was too. Then she did the same thing with other names and I pointed to the pictures. When I got back to school, my mother told my teacher that I was starting to read.  The teacher said, “Well, we will show her the letters, but we won’t expect her to know them.”  She obviously thought I was dumb. My mom marched down to the school principal’s office and insisted on making the teacher teach me.  Duh! So she worked with me every day and my parents read to me every night until I was fully literate.

By the time I was in kindergarten at Le Conte Elementary in Berkeley, I could read very well and I was the smartest kid in my class. My instructional assistant was Andrea Blum.

Kindergarten LeConte School, Andrea Blum

My teacher, Louise Rosenkrantz, said I helped her to teach me.  She wore jeans and glasses all the time.  She saw my intelligence.  I realized that even though I couldn’t verbalize what I was learning, I was faster at learning than pretty much everyone around me. She inspired me.

By the second grade, I was still the best speller in the class but I fell behind in reading because the print started to get smaller and I couldn’t turn pages by myself.

At Malcolm X Intermediate School in Berkeley, I had a wonderful instructional assistant, Jennifer.

Jen V Malcolm

My parents and I made the school district build a ramp to the second floor of the school; otherwise I wouldn’t have been able to get to class.

Malcolm ramp Lawrence2

I became a better writer because of my fourth grade teacher, Dana Hill. I always struggled at math because I couldn’t use my hands to manipulate stuff, which is probably why I hated math and I still do.

But when I got to Willard Junior High in Berkeley, the work got extremely difficult and I fell behind.  My parents took me to the doctor and I was tested for learning disabilities. I had to be put in special ed classes. I don’t remember learning anything in those classes and I didn’t have any friends.  I was in a support group that the “full inclusion specialist” set up for me to make friends. We did stuff in the community like go to movies and they came to my house.  I don’t think my social skills improved at all from being in that group.

WW 2

At Berkeley High School I was put in fully inclusive classes, but I had to do my classwork in a broom closet, because the library was not wheelchair accessible.  I had an awesome teacher, Page Jackson, who advocated for me so I could advocate for myself. I don’t think I would have graduated if it hadn’t been for Page.

Winter Ball2

I couldn’t take a foreign language but I had to learn a symbolic language, Minspeak©, to access my communication device. I was able to graduate because we convinced the school to give me language credit for Minspeak©.

BHS grad

The first college I went to was Chabot College in Hayward.  The campus was beautiful. It had pretty trees and plants and the library was even accessible. I took one English class, which I passed. I also took a P.E. class for students with disabilities. It was cool because I got to lift weights for the first time. I got pretty buffed and I also passed that class. Why would I fail?

Chabot

The next semester I got really scared commuting to school from Berkeley. My new attendant got stoned before she drove me there and she sped and wove around different traffic lanes. After I fired her, Megan J. went with me and I was taking public transportation, which made me late to class every day. I dropped out because I missed too much of the class and couldn’t pass it.

After that, the agency that was providing my attendants thought that a day program would be a good fit for me because the Regional Center would pay for the program and the agency would not have to pay my attendants while I was there. So I went to the CP Center.  I thought it was cool at first, because everybody had the same disability. That wasn’t enough to make a good experience. Cerebral palsy is such a broad label for people with different cognitive levels and physical abilities that there were some people who seemed to be asleep in their wheelchairs all day and others who were as intelligent as me, and some who could walk and talk. The classes were geared toward people with developmental disabilities and I felt lost. I started acting out by texting and listening to music on my device without headphones in class. That was my way of telling them I was unhappy there. Elvis, my ex, was there, and listening to music was also a way of drowning out his voice in my head.

I was finally able to talk to my therapist, my parents, the agency, and the counselor at the CP Center and tell them that I was unhappy there and I wanted to quit. So I made the smart decision to go back to college.

I’m now at the College of Alameda, taking Communication. It is close to my house, has a pretty campus, and I’m getting better support from the Disabled Students Services and my attendant. I’m much happier there because everybody has the same goal as me: a college degree. The class is interesting and the teacher actually teaches.

College-of-Alameda-420x280

My dream is to graduate someday but right now I take it one day at a time.

Friends

Because of my disability, friendship has been hard for me.

My first real friend was a girl named Elizabeth.

Halloween

She was in my kindergarten class. I remember her sitting next to me. She helped my attendants. We used to sleep over each other’s houses, went to each other’s birthday parties. She has a fraternal twin sister named Jessica. We were all friends through elementary school. I was obsessed with Elizabeth. In fact, I was obsessed with twins in general. There was another set of twins from kindergarten, Marcus and Joseph. They are identical & both had mild cp. They were like brothers to me.  In high school I went to the prom with Lamile, another twin, which saved my ass. He was a sweetheart that night. I was having a nervous breakdown and he acted like a gentleman.

In middle school I had a hard time making friends. A special ed teacher thought she was being helpful and gathered a group of kids to hang with me. This made me feel dumb because it was not my choice.  I was pissed at her because it took away my ability to make my own friends.

Binny was my longest friend. We met at camp. We were pen pals after that. It was cool. She became my really good friend. We went out to lunch. She slept over my house a lot. She would tell me her problems like depression and suicidal thoughts. I didn’t tell her about my problems because she didn’t seem to want to hear them.  She came along with me on vacation and got too personal with me. She got in bed with me and I wanted to throw up. When I got home I wrote her and told her that she was wrong and to leave me alone. I hated her from then on.  But she still stalked me by writing comments in my blog.  It made me sick and killed any interest in making new friends.  Since then, the only people I could think of as friends are my attendants. They protect me and take care of me.  But some of them have hurt me.

My first attendant who I considered a friend was Jennifer, my classroom assistant in intermediate

Jennifer V

school.  She was a second mom and advocate. I was close to her kids. I was at her wedding, to a body builder who worked at my school.  He was a sweetheart, and he passed away from heart failure. She got married again. Right after the wedding she was in a serious motorcycle accident. Her memory was gone.  She forgot her life. Now whenever I see her I have to remind her of her life. She was one of my best advocates.

Kemi and Jennifer were in intermediate school with me. We had a lot of fun together. The most fun thing was being in Macbeth.  I was the first apparition. I still remember my lines: “Macbeth! Macbeth! Macbeth! Beware Macduff.  Beware the thane of Fife. Dismiss me. Enough.”

Ana's BD pics 212

       Another attendant who became my friend was “Cat Dog.” From her first day with me we were buddies. “Toxic” was so jealous of our relationship. Cat took care of me without controlling me. She made sure I was fed, clean, looked like a human. I love her kids, especially Faith, my drama queen. I’m in complete awe of her.  I’m so proud of her. Cat even had a baby on my birthday!  A boy named Honor. He is awesome. Cat has a grandson named Justin, who is so smart. The other day his mom (JJ one of my attendants), took me to Cat’s and Justin said “You talk with that thing.”

Since Binny, I have been having trouble trusting people enough to make friends.

Fifth grade assignment

We had to combine names of U.S. presidents with compound nouns. What was I thinking?

 

  1. Franklin Roosevelt walked toward an ugly hallway.
  2. I like to shine a flashlight in Bush’s eyes.
  3. Bill Clinton doesn’t make anybody upset.
  4. Richard Nixon had a birthday.
  5. Abraham Lincoln is not a grasshopper.
  6. George Washington hated strawberries.
  7. John Kennedy loved blueberry jam.
  8. Jimmy Carter wrote on a cheeseburger.
  9. A notebook is married to Ronald Reagan.
  10. Theodore Roosevelt ate a sailboat.
  11. Harry Truman had a nightmare.
  12. Breakfast was Dwight Eisenhower’s favorite meal.

 

Anna

Death is hard for me especially when it’s a young person.. As a person with a disability it’s pretty common.  I’ve lost a lot of friends. My friend Anna Whitaker choked to death.  As a matter of fact, the same attendant who refused to take me to the hospital is the one who was feeding her when she died.

I remember that with her communication device she used row-column scanning and it took forever just to say hi. She didn’t know how to read so she used Bliss symbols. That doesn’t mean she was not intelligent.  I can’t imagine how she expressed her wants, needs, or anything. She couldn’t say if she was happy sad, or in pain. Her parents got divorced and it was difficult for them to deal with her.  Shoot! It was so difficult for her to deal with anything at all. We had the same occupational therapist. A lot of times I saw Anna cry in frustration. It hurts me to know that there are people like her who are struggling to communicate.

When I found out about her death.I was so upset that I could not eat and I still have a hard time eating. I was throwing up and crying at her memorial service.  Her mom bothered me. She had a lot of problems. She was saying how Anna was innocent.

I’m so blessed to have a loving family who supports me.  I feel lucky to have relationships with people.  I can have conversations with my awesome nephew. Anna had no real life, but I sort of identify with her. People told her that she she couldn’t communicate and people have said the same about me.   How do you think I feel?Anna W

At times I feel so scared about eating that I spit out all my food or I don’t eat.  Anna’s death is still with me.