Remember Who You Are: A Memoir of Learning Disabilities, Self-Discovery, and the Power of Perseverance

By Jeff Devaney

Jeff lives with a language-based learning disability that has shaped his entire life. As a child, he entered school eager to learn and make friends, but the public schools did not know how to provide Jeff with the educational experience he needed and deserved. In 4th grade, he and his parents were told he would never finish high school and would never be able to live independently. In 5th grade, Jeff transferred to Landmark School in Massachusetts. There he learned how smart he was and that he could do whatever he wanted. "Team Jeff" rallied behind him at Landmark and in the years to come. That group of teachers, family, and friends supported him on his journey through high school, college, and graduate school, all the way to where he is now--a board certified nurse practitioner.

• Language: English
• Publisher: Lulu.com
• Release date: Apr 11, 2023
• ISBN: 9781312690868

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Introduction

HERRIMAN, UTAH, 2021

Life is similar to a book, for they both have chapters. Some chapters are long, some are short. Some are exciting, others sad and tragic. Each chapter is shaped by the ones that came before, and together they tell our life story.

In some chapters you feel powerless over the situations and people you encounter. But eventually you learn that the one person you have definite control over is yourself. You control your reactions and responses, and the choices you make determine outcomes—positive or negative—and who you will be when you begin your next chapter. As my wise daughter Adeline once told me as I read her the lines above, You shouldn’t live the same chapter over and over. Otherwise, there is no moving forward.

Chapter one of my life began in Concord, New Hampshire, on November 5, 1976. By all accounts, there were no issues or complications in utero, or when I finally entered the world at 4:00 p.m. (though, at 9 lbs, I am sure I gave my mom a run for her money). I was born into a loving and nurturing family, consisting of my parents, Bob and Betsey, and my brother, Bryan, one and a half years my elder. On that day, and for the next couple of years, everything seemed just fine.

My parents noticed a problem when I was three years old. My speech was not developing as it should have. Over the next chapters of my life, I was identified with hearing difficulties and learning disabilities, including dyslexia, dyscalculia, and problems with executive functioning and short- and long-term memory. Learning of these diagnoses was traumatic for me and for my parents. We received information about the specific details of each disability, and I read many books on learning disabilities, but these materials never encompassed for us what it was really like to live with these disorders. The books didn’t present a way to move positively from one chapter of life to the next. They weren’t hopeful.

My ultimate goal in writing this book is not to educate the reader about the details of learning disabilities, but to offer my story of how living and functioning with disabilities has molded my life. I want to provide a resource on how it really is, from someone who understands what you, or someone close to you, is going through. My own stories range from inspiring to deflating, but ultimately tell an encouraging tale. Certainly, everyone with a learning disability, or who has a child with learning disabilities, will have their own unique stories. But we all have this in common: the road ahead is a hard one. Yet the outcome can be successful, even magical. You can overcome your challenges by working hard and asking and allowing others to help you.

If you become discouraged and feel like giving up, I hope my story will show you a path forward. If you ever doubt your ability to pick yourself up and face the next challenge, I hope my story will help you get back on your feet, saying, If he did it, so can I.

This is why I want to share my story.

Chapter 1

YOU DID REALLY GOOD

LDS HOSPITAL TRAUMA SERVICE,

SALT LAKE CITY, UTAH, 2003

On a typical day, the trauma service at the LDS Hospital was staffed by a mid-level healthcare provider, an intern, a resident physician, and an attending physician. On this particular day, the only provider staffing the trauma service was the attending physician. I was also on rotation, as part of the clinical requirements for my master’s program at the University of Utah. It was just the two of us. Good thing the morning got off to a slow start.

Around 11:00 a.m., the service became busy with trauma cases, including car accidents and industrial accidents, but we kept pace. At 3:00 p.m., Trauma 1 was called over the PA, the most serious level of trauma, requiring an immediate response. The attending physician and I rushed to the emergency room. A Life Flight helicopter was on its way from the scene of an automobile crash. Twenty long minutes later, we heard the helicopter land on the roof. The Life Flight team brought the patient down to the ER. The patient had been in a high-speed, head-on motor vehicle accident, and he had been ejected from the car. He had been intubated on the scene, but his vital signs remained unstable due to severe blood loss and multiple traumas.

Other members of the trauma team now raced to the emergency room. Providers from neurosurgery and orthopedic surgery joined the trauma surgery and the emergency room physicians. It was determined that the patient had an open head injury along with multiple compound fractures in his right leg and left arm; however, these could not account for the source of the bleeding. Further examination revealed significant blood in his abdomen. If we were going to stabilize him, we needed to find and fix the source of his abdominal bleeding. Under less critical conditions, we would have done a CT scan of his abdomen and pelvis, but he was too unstable. Instead, we rolled him directly into the operating room. The attending physician looked at me and told me to scrub. I need you to assist.

Outwardly, I could respond only one way: Absolutely. On the inside, I was so scared. I had not yet been in a situation where I was directly assisting on a surgery, much less on an unstable patient. I asked, When will a resident or another attending be here to help?

The attending physician looked directly at me and said, It’s you and me. You’re capable of helping me do this surgery. We don’t need anyone else’s help. He spoke very calmly, in a way that eased my nerves but at the same time made my adrenaline pump harder than it already was.

As we scrubbed in, the attending explained to me how the surgery would proceed. My position was on the left side and his was on the right. He would make an incision in the middle of the abdomen to begin the search for the source of the bleeding, and I would use the suction to clear as much blood out of the abdomen as possible. And then, he said, we’ll see what happens.

We got gowned and gloved, and walked over to the operating table. The patient was already prepped and draped, so the attending and I took our places and went to work. He made a midline incision on the abdomen, and then out came a big burst of blood. When I say burst, I mean burst! All the blood and all the pressure that had been building up in that abdomen were suddenly released through that incision.

I cleared as much blood out of the abdomen as I could, trying to help the attending find the source, or in this case, sources. The patient had a large laceration on his liver, his colon was perforated, and his right renal artery was lacerated as well as his right kidney and bladder. We worked on stopping that bleeding for what seemed like a frantic five minutes, but in actuality was about one hour. During that time, the anesthesiologist gave him fluid and blood products to maintain life-sustaining blood volume. Throughout the process, the attending barked orders to me: Hold this! Push on that! Suction this! Suction that! Clamp this! Clamp that!

Once we got most of the bleeding controlled, the attending said to me, Good job. You did really good. But we were not finished. He explained that the next step was to fix the injuries and save what organs we could. We continued our work. After about 20 minutes into this second phase, two residents and another physician came into the room. The attending physician had a resident scrub in but asked me to remain where I was. He wanted me to be his first assist, seeing as we had been in this together from the beginning. He told the others, We have this.

After completing the surgery, I scrubbed out and went home.

Not a bad day’s work for someone who was told he would never graduate from high school.

Chapter 2

I HATE READING OUT LOUD

RIDGEFIELD HIGH SCHOOL, RIDGEFIELD, CT, 1991

I was seated in the middle row of my freshman English class. We were reading Of Mice and Men, and the teacher was asking each student to read aloud an entire page. He started with the student at the front left of the class and moved along row by row. I knew by looking at the number of pages in the chapter that I was going to have to read. I counted out the number of students in front of me and counted out the same number of pages until I got to the section I would be responsible for. Silently, I began scrutinizing my page, hoping there would not be a word I could not read. I was halfway down the page and there it was, a word I knew I could not pronounce.

I tried to sound out the word in my head as my anxiety rose. I knew I was not pronouncing the word correctly, but I could not for the life of me figure out how to say it. I moved on to the rest of the sentence, hoping it would give me a clue to what the word was. That did not help. And all the time I spent trying to figure out this one word, I was not listening to the other students reading. I did not know where we were in the text. I did not know what was going on in the story. And then I heard:

Jeff, please read the next page.

I began reading, and things started off smoothly. But when I got close to the unpronounceable word, I felt my anxiety rise again, and then things went downhill. I started substituting—replacing words that appeared in the text with similarly sounding but wrong words. Students corrected me as I misread, but this just made the situation worse. Every correction seemed to shine a spotlight on me, and on my disability. I finally just quit and asked if someone else could please take over. The teacher insisted I read to the end of the page, so I continued, and it continued to go badly. When the word arrived, I just stopped. I didn’t even try to form a sound. Another student spoke up and said the word, and I picked up from there. I did not regain my composure. My voice wavered, and I kept making substitutions. Finally I got to the end of the page. I was glad the torture was over. And so, probably, was everyone else.

I felt like a complete idiot. I sat back in my chair and looked down at the top of the desk, pretending to follow along as the student beside me picked up from where I left off. In reality, I was avoiding looking at the other students. I felt them staring at me and thinking, What an idiot! What is wrong with him? I needed my anxiety to subside because my heart was pounding what felt like a thousand times a minute. I took deep, slow breaths to prevent my heart from jumping out of my chest. Frozen in my seat, I did not dare to look to the side or lift my head for fear of seeing expressions of ridicule. I dreaded the end of class when I would have no choice but to look up, pack my bag, and walk out of the room.

When the bell rang, I took my time loading up my backpack to let others exit before me. I could not face them. After what felt like an hour, I stood and put my backpack on my shoulder. Carefully avoiding anyone’s eyes, I walked out of the room, feeling the teacher’s glare of disapproval behind me.

Chapter 3

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HOW IT ALL BEGAN

My mother tells me I was a pretty calm infant. She says all the testing performed at my birth and in the following days was normal. No one noticed issues with my hearing, sight, heart, lungs, or anything else. At home, I began throwing up whenever I ate, so my mother brought me to the doctor. He referred us to a specialist, and I was diagnosed with pyloric stenosis, a condition that prevents food from entering the small intestine. This required surgery, which was successfully performed on my twelfth day in the world. My vomiting issues resolved, and from that point forward I did not have any issues with pyloric stenosis or complications from the surgery. I was, once again, a normal baby boy.

My family lived in New Hampshire, first in Laconia and then in Hudson, roughly 50 miles to the south. It was in Hudson where I started preschool, though I do not remember much about my life prior to first grade. There are bits and pieces I remember about kindergarten, such as naps and fighting with my brother, mainly on the way to and from kindergarten. This was when I was introduced to I will stop this car and you two will walk home if you don’t stop! I do not remember anytime in kindergarten having issues related to reading; however, I also do not remember that we read very much at all. I also do not recall any issues with peers picking on me as it related to the way I spoke or stuttered.

My parents tell many stories of my younger years. They say I was a protector. One story my mother frequently tells, which I do not recollect at all, was when we were living in Hudson. A brother and sister, Mike and Karen Biagini, lived up the street and had become good friends with Bryan and me. We would play almost every day together, either at their house or ours. The streets were safe, so we also spent a lot of our time playing outside. Other kids in the neighborhood often joined us, though some of them were not so nice.

One day my mother was in our house and heard yelling and crying outside. She looked out the window and saw me running down the street, chasing two of the not-so-nice neighbor kids with a big stick in my hand. The kids were crying, and I was yelling at them. My mother thought it was a very funny sight. She ran outside to see what was going on. I told her they were picking on Bryan, and I had had enough of it, so I grabbed the stick and started running after them. I think that is when she knew I was a protector.

The first time my parents noticed a problem with my language development was when I was three years old and in preschool. My parents observed that my speech had not developed as my peers’ or as Bryan’s had, so they asked the school for a formal evaluation. The results qualified me for speech therapy, which I began the same year and continued for many years. I was picked up twice a week from home on one of those small school buses and brought to the elementary school where I received speech therapy. Afterwards, the bus would bring me back home. There was no talk at the time of learning disabilities. My mother believes the evaluators had no idea of any of the underlying causes of my language deficiencies. They assigned me to speech therapy, and, as far as they were concerned, that would take care of that.

At the time, my ability to produce recognizable sounds was very limited. I could not articulate many of the most common sounds, including /y/, /s/, /t/, /sh/, /th/, /wh/, /k/, /oo/, and /r/, and I struggled with other sounds of the English language. For almost everybody, my speech was unintelligible. The only one who could understand what I was trying to say was Bryan. He learned my language. When I spoke, people would ask Bryan to explain what I said or what I wanted, and he would tell them. It was like I was speaking a foreign language that only Bryan and I knew. I remember wanting to be near or play with my brother back then. Now I wonder about all the reasons why. Was it just because I liked playing with him, or was it because I needed him to understand others and to be understood by others?

My mother tells me I soon developed recurrent infections of the middle and outer ear (otitis media and otitis externa). The infections did not resolve with traditional treatments, such as multiple rounds of antibiotics, so my pediatrician sent me to an otolaryngologist (ear-nose-throat specialist, or ENT). The ENT found that my ears were totally clogged and had been for some time. Additionally, the middle and outer ear and the eardrum (tympanic membrane), along with the three bones in the ears (the malleus, incus, and stapes), were severely irritated by the wax build-up. The canal inside of my ear and the eardrum were red and swollen and were bleeding slightly, which resulted in pronounced hearing limitations.

My mother and father were blown away by these discoveries because I never complained about my ears hurting. And aside from deficient language skills, I never showed any outward signs I was having trouble hearing. Ultimately, I had eustachian tubes placed three different times until my ears finally cleared up. As soon as the first tubes were placed, my parents noticed that I began to say some of the hard-to-hear sounds (/y/, as in yes, for example). They quickly recognized that some of the root causes of my speech issues had to do with my inability to hear.

I do not recall having a feeling that my hearing was different than anyone else’s. I did notice daily that my ears itched and burned, sometimes ached, and that they felt full and sticky. But that was never enough to stop a three-year-old boy. I guess I thought it was normal because my ears had always felt that way. When I developed infections, I definitely noticed increased discomfort in my ears, but I did not complain to my mother that they hurt. I think it was the fevers that gave it away.

I began to have my ears cleaned every day, usually by my mother with a Q-tip, and occasionally by an ENT. These cleanings typically felt incredibly good, at least when they were over. In the eighth grade, I took on the responsibility for daily ear cleanings, though I made my mother inspect my ears to make sure I got the wax out. Inevitably, because of the amount of wax in my ears, I missed some, and she would try to remove the rest. I say try because getting my ears really clean at home was difficult. My ears would hurt when the Q-tip went even halfway into my ear canal, so going deep was basically impossible until I went to the ENT, who used instruments like the water irrigator that could clean deep without the discomfort.

Between cleanings, I never noticed how much and how quickly my hearing decreased. After a cleaning, though, I immediately recognized that softer sounds were much easier to hear, and when someone spoke to me, I did not need them to repeat what they had said—as often.

Although the cleanings were mostly pleasant, some treatments necessary to clear my ears were long and painful. The following memory comes from the perspective of a very young boy, and I assume it was not as bad as I recall: My mother took me to the ENT for a checkup. As the doctor examined my ears, I felt incredible pain, like a razor blade was being inserted into my ears. When he finished his inspection, he said my ears were completely clogged again and he needed to clean them right away. He said he had to do it in another room.

I got up and followed the doctor. What I saw in the next room was amazing—and completely horrifying. There was a chair with a metal, cage-like halo where my head was to be placed, with straps to keep it from moving. There were also straps on the armrests and on the feet of the chair, like what you see in movies when someone is strapped into an electric chair before being put to death. There was also a strap to go around my chest. I climbed into the chair, and they bound me so tightly I could not move. At all.

The doctor pushed an otoscope into my ears and used multiple tools to dig out the concrete-like wax. He used drops to numb the area and loosen up the wax, but they did not seem to help. Imagine cleaning out your ears with a Q-tip and you go just a little too far. Now imagine someone else doing the same thing, but going much deeper, digging, picking, and scraping the inside of your ear over, over, and over again. Now imagine you can do nothing to stop them. Luckily, I remember only once having such an extreme experience.

As my ears were treated medically and surgically, my speech began