for Technical Assistance
Connecting people with disabilities who are facing day-to-day barriers with those who have overcome them.
While being treated for leukemia, Beth received a brain injury in the region of the cerebellum. She had an unexpected reaction to one of the drugs, which is extremely rare, but as Beth says she just “happened to be one of the lucky ones.” The injury impacted her movements, but horses and dogs helped keep her moving forward living independently. This is her story …
I had already gone through treatment for leukemia and had been in remission for two years when it came back. Because the usual treatment was ineffective, the doctors increased my medication. The increased dosage caused my body to have an unexpected reaction; a reaction that is extremely rare, I am told, but I happen to be one of the “lucky ones”. The first week, I couldn’t control my body at all. It took two orderlies to help me into the bathroom. Instead of a button to call the nurse, I had a 4 x 4 pad. I would swing at it uncontrollably until I “accidentally” hit it. I also couldn’t talk. Because I couldn’t control my hands, I couldn’t write to communicate. It was very frustrating. People would talk to me r-e-a-l-l-y s-l-o-w-l-y AND REALLY LOUD, and I wanted to yell at them that it was my body, not my brain, that wasn’t working!
I am a horse trainer and have all this knowledge and experience. I’d really love to share this knowledge and experience with others, but no one wants to listen. Because of my disability, they ‘assume’ I don’t know anything. So, before we begin my story, I really want to thank you. The biggest thing for me, when one is disabled, is getting someone to listen. So telling my story is FANTASIC.
The cerebellum is the little thing at the bottom of your brain that controls smooth muscle coordination. Mine was damaged while being treated for leukemia. For example, I couldn’t use a fork because nothing would stay on it. Even if it did, I was more likely to poke myself than actually get food in my mouth. What is really funny, though, is I could use chopsticks! During the Vietnam War, my dad flew airplanes in and out of Wake Island and learned to enjoy Asian food and the use of chopsticks. When I was five, he taught me how to use them. During a hospital day pass with my dad, we went to a Chinese restaurant. We always used chopsticks at Chinese or Japanese restaurants so I automatically picked up the chopsticks and it was so easy! I don’t know why, but when I used the chopsticks, I was able to put food in my mouth!
My mother died of cervical cancer when I was 18. Because she had died without ever being sick, I thought when I was diagnosed with leukemia that I would die too. It was then that I was given Dr. Bernie Segal’s book, Love, Medicine, and Miracles. Thank God, because on Page 11 was the first time any doctor had said to me, “you’re really sick. You might die, you probably will, but you don’t have to!” From my doctors, I had only heard “you’re going to die!” They didn’t say this directly, but that is all I heard from them – it is what my ears were hearing. So, reading the book, page 11, a doctor, not my father or my family but a doctor - for the first time - said “yeah, ok, yes. But you don’t have to!” This sentence changed my whole attitude. I started doing a lot of visualization and meditation recommended by Dr. Segal and I was able to go into chemo with a type of experimental attitude of “Let’s see what happens!” I did great! I was told, though, that the next step would be a bone marrow transplant if I came out of remission. There are different types of leukemia and mine is a particular nasty one.
While in remission after my initial bout with leukemia, the doctors suggested that I harvest my own bone marrow just in case I needed a bone marrow transplant and there wasn’t a match. In prep for it, I listen to Bernie Segal’s tape on preparing for surgery and followed his instructions. After the procedure I was able to eat and drink without a problem; I required no blood transfusions; and I experienced no pain.
Two years later I came out of remission. With the help of a bone marrow transplant, my leukemia was back in remission, but the increased dosage of my medication caused a cerebellar-focused brain injury.
The brain injury left me walking wide for balance; I was very uncomfortable on my feet; could barely talk; and I could read and write very little. I sought the opinion of an expert neurologist. The neurologist said that I would never make gains from that point on.
I was extremely upset. That summer when I tried to get on a horse and couldn’t, I decided that I didn’t want to live. I attempted suicide and failed. I was extremely angry and upset, but within a few days I was happy the suicide attempt had failed. I talked to my dad and my psychiatrist and I made changes in my life including the addition of a little Labrador retriever named Leo.
In looking for a specific kind of training collar for the new addition of a dog in my life, I called the closest dog trainer in my area. While talking to the trainer, she asked if I had considered a service dog to help me with walking since I fell a lot. She said I could train the service dog myself. To buy one already trained, depending on what the dog needed to know, would cost between 30 and 80 thousand dollars! I had not thought of a service dog to help me walk, and the thought of training my own dog was exciting. My dad and I began the search immediately.
It had taken almost two years for me to drive again, and I still had not mastered it on my own, but the excitement of driving the 100 miles to pick up my new puppy gave me the incentive to master driving again.
I was now taking anti-depressants. The combination of the medicine and having the responsibility of a puppy to train kept me from thinking only of and about myself. This made me feel really good. I also started seeing a different psychologist. She asked me what I had wanted to do before I was injured, and I told her I wanted to get my PhD. She put her hands on her hips and said, “Well, you better get going!” By age 30 I had my master’s in Mental Health Counseling.
I am also riding horses again. It took three people to get me on a horse after my injury. At first, all I could do was walk the horse. Then I went from walk, to trot, and then finally to canter – I was so excited! Horses used for therapeutic riding need to be ridden frequently by trainers themselves. They need to be an easy ride. As I got better with my own disability, I was able to be a schooling rider. I was able to ride on my own a few days a week and take a lesson each week, as well.
Horses and dogs and living independently have kept me moving forward. In 2006 I was in an automobile accident that left me with two crushed vertebra. At one time, I couldn’t even ride an escalator. I didn’t have the balance. Eventually, I could ride the escalator but I had to hold on with both hands in a death grip! Eventually I could do it holding on with one hand but couldn’t hold anything in my other hand. I just couldn’t do it, don’t know why – not even a pen in that hand! Now I can ride the escalator with something in my hand which has made shopping much easier, but it took many, many years. With most things I can’t do, I may give it up for a while, but I will try again – six months, a year, even 2 years, but I will try again. Sometimes I succeed and sometimes I don’t, but I never give up. That is why it is so important to live independently. If you have to do something on your own, eventually you will learn to succeed.
Leo was absolutely fantastic so I figured I’d get another lab when Leo passed. When I arrived at the center and told the lady what I was looking for, she pointed me to a Doberman. I had all of these Doberman prejudices: they’re mean, they’re nasty, they bite, they are not trustworthy, they’re cold, and they’re not affectionate. But immediately, when I looked at this dog, there was something between us. Still it took four hours for me to actually sign the paperwork. That’s how long it took my heart to tell my head to shut up!! Belle was the best 20 dollar dog I ever had! She had heart issues, though, and I only had her for a year and a half, but she taught me great things. One - Dobermans are wonderful dogs. Two - that I didn’t know I felt vulnerable until I didn’t feel vulnerable. It was the middle of summer in Seattle and I was driving with all my windows down. We were stopped at a light and Belle was lying down in the back seat. A guy started walking up to the car in what Belle assumed was an aggressive manner. I had no idea what he wanted. Belle just sat up in the back seat and looked at him. And he goes, “Oh, okay. No problem” and he turned and walked away! And I thought, that’s it, Doberman from now on. No one was more surprised than I that I adopted a Doberman. Dana, my dog instructor, said for most people, a Doberman, as a service dog, wouldn’t work, but for me they have been the best.
It was probably 10 years post-transplant and I was still really self-conscious about my voice. Most people either thought I was kidding or mentally challenged in some way and this would drive me absolutely crazy, because before all this I was a member of Mensa and Intertel. People would react even if they tried not to react. Because my mom was unstable, I learned early to sense the temperature of a room by just walking in, which was a good thing when living with my mom, but a bad thing post-bone marrow transplant. It was/is easy for me to sense people’s hidden reactions to my voice. In the past, a simple phone call to ask someone for information would cause me to cry. Moving to Arkansas made a huge difference. There, people rarely react to my voice - no one cared. Now, I don’t give it a second thought. Thank you people of Arkansas!
Walking, writing, reading, driving, eating, going back to school, riding horses, training dogs—everything and anything was an obstacle. When I left the hospital, basically, I was a baby in a grown woman’s body. I couldn’t even read a clock.
My voice isn’t normal and I still fall down once or twice a year. I’ve taught Ava, my new service dog, to steady me and, if I fall, she helps me get up. She also picks up things from the floor when I need help.
The internet has been the most helpful for most information.
With the dogs, my biggest influence was Dana and Larry Babb. They were at Pawsabilities, in Tukwila, Washington.
With the horses, my biggest influence was the Little Bit Therapeutic Riding Center in Woodinville, Washington.
As a kid I learned to compartmentalize so I was able to do things without fear or emotion. So I didn’t feel any fear at the time of my injury. It wasn’t until I left the hospital that I became so depressed. Emotions have to come out somehow, somewhere, sometime.
My advice would be to accept people as they are and not to compare them to who they were or what they could do, but who they are now. As an example, because people reacted so poorly to my voice, I reacted poorly. It wasn’t until I came to Arkansas, where there was very little reaction to my speech that I started to talk a lot. The people of Arkansas have given me one of my biggest gifts – the gift to interact with others.
I had to hit rock bottom (for me that was attempted suicide), before I realized I needed to be honest with my psychologist, and that I needed change in my life. So, I don’t know that you can tell someone to make changes. They have to find it out on their own. I certainly don’t want to tell people to attempt suicide! But, we as a people don’t seem to have evolved enough to learn from other’s mistakes or advice. People can share their knowledge, but they can’t give it to someone. It seems we have to learn and own it for ourselves.
Also, living on my own was very tough at times, but in hindsight it was the BEST choice. It forced ME to do things for myself. Had I gone to live with family, with the very BEST of intentions, they would have done for me and thereby stifled my growth. I would have never gotten this far!!
I am pursuing my Para-Olympic dreams - with horses! Para-Olympics came
into being after World War II to give returning injured solders something
to strive for - an attainable goal for those with a disability. So off to
Rio, Tokyo, and beyond and, if I’m lucky, I will ride until the day
I die…hopefully a VERY long time from now!
Questions or comments may be sent to Peg by e-mailing the Southwest ADA and referencing ADA StoryTeller - Beth in the subject line.