When I was a kid, I wanted nothing more than to run away from my existence. The simple act of conversing was filled with so much anxiety that I often chose to stay silent because it was just easier and less embarrassing.When I used to call my friends on the phone, I recorded myself onto a tape recorder (remember those? 😊 ) so I didn’t have to actually speak when asking my friends’ parents to talk to my friends.

When I was in high school, I decided that a life of shyness, pain, and anxiety wasn’t a life I wanted to lead anymore. I didn’t want to run away from my fears. Instead, I decided to push straight into them and see what happened.

Recently, I read a Facebook post that was honest and vulnerable about stuttering, and it inspired me. Don’t get me wrong, I’m not shy to talk about my stutter, and I definitely don’t run away from it anymore, but I also don’t really talk about either. I just assume you either take me for who I am, or you don’t, and I feel no need to discuss it further.

However, it’s always good to take a step back and reflect on the things you are grateful for.  Doing so makes me realize that I am grateful that I stutter.

It may sound strange to say because most people who I know in similar situations would completely disagree with me. It's certainly true that if I didn’t stutter, I would be a very different person,  but I think that’s kinda the point. I like who I am and a large part of that is because I struggle so much when I speak. Allow me to explain.

HERE ARE SIX REASONS WHY I AM GRATEFUL FOR MY STUTTER:

1. I experience an ever-renewing feeling of accomplishment.

Stuttering is a daily struggle, whether I like it or not. Every day is a new decision to not let it get the better of me. It’s a battle I constantly choose to win. That feeling of accomplishment is contagious and rolls over into all your my decisions and actions — mundane or serious. Knowing that you’ve already won battles today makes it not a big deal to accomplish more. It's strengthening and empowering.

2. I am sensitive to others.

Knowing what it feels like to be on the receiving end allows me to appreciate and think about others’ struggles and successes more than I might if I didn't stutter. I am more in tune to understanding people, and I take the time to make sure I understand  what they want and how they feel.

It's that interest in people that enables me to take the time to really think about what people want and need. This skill goes beyond the personal; it is very helpful in my professional career as an educator and as a marketer.

When creating a marketing strategy, knowing your audience is crucial. Being able to really know what they want and how to deliver it in a way that matters is what makes a campaign successful.

I might not be so good at that if I wasn't as sensitive, and I might not be as sensitive if I didn't stutter.

‍3. I never feel that old.

This one is hard to explain — but I’ll try. Carrying something with you from childhood kind of keeps you in that state of mind. In certain regards I have left that part of life behind me and forged forward, but there is still a part of the past that I hold on to. It's the part that knows I’m not perfect, the part that knows I struggle, and the part that knows what it’s like to feel pain, frustration, and humiliation. These are parts I don’t want to let go of. These are the parts that propel me forward into always challenging myself and to appreciating others.

When you hold onto parts of your childhood, something about it keeps you in that mindset. So for me, I still always feel like my younger self, though I have accomplished and am proud of so much about my adult life.

Also, because of my stutter, there is still a part of me that feels like "don’t take yourself too seriously, focus on what’s important and don’t get caught up in stupid stresses". One of my favorite quotes is: "Only focusing on things that matter, and not 'adult stupidities' keeps you feeling young at heart and in action."

4. I am patient.

They say “Patience is a virtue” — and it definitely is. I cultivate patience for myself and patience towards others every day. Patience can often be swapped for strength. It’s not easy to wait for something. It’s not easy to be slow to anger or slow to get frustrated. My life experiences have taught me patience, and that has been a great gift.

5. I allow myself to be inspired by others.

When you have firsthand appreciation of what it’s like to struggle and succeed, it easily puts you in to the shoes of others. You realize and appreciate that the road is not always easy and when things are hard, people want you to know. By the same turn, when things are good, people want to share with you. Community and networks are grown when people appreciate and respect one another. The world works because we are not all the same person.

 Editor’s note: Support animals are one of the most important accessibility tools that people with differences utilize. Though many assume the only working animals for people with disabilities are dogs for the visually impaired, today all kinds of animals are being trained to accommodate difference. Dogs are now providing service to people with all kinds of conditions, from seizures, to food allergies, to dementia and Alzheimer’s disease. Today we have the story of Elvis, a mobility support service dog, who wrote in to tell us a little bit about how he helps his human thrive. Think you or someone you love might benefit from a service animal? For general information about service animals, check out the Americans with Disabilities Act resource page here. You can also check out this great article, which provides a list of organizations that train dogs for specific conditions. Most of these organizations can provide service animals for free or for very low cost to people who need them. You can apply for a service dog via various organizations, including The Guardian Angels, Service Dogs of America, and Paws with a Cause. See this website for a list of frequently asked questions about service animals and the law, according to the Americans with Disabilities Act. You can check out The Service Dog project, which raised Elvis, right here. Interested in training your dog to be a service dog? You can find more information here. For more information on types of services dogs and how they work click here.

Balancing school, health, an internship, and life can seem quite challenging at times, but we embrace every moment. We made a promise to ourselves to live life to the fullest, make the best memories, and pursue our goals without looking back. My human also has some incredible doctors that helped inspire her passion to work in medicine. (Not that she needed much pushing! She has been known to take her finals in the hospital the night before surgery.) She just loves to help people, especially children, in any way she can. In fact, we both love volunteering with kids. Before me, she couldn’t do this volunteer work very often because of her mobility challenges. Now, we do it together all the time. 

I would be lying if I said there weren't any moments where my human’s health scares us! There are definitely tough days, especially during hospital stays. Through it all, however, she has a determination that never seems to fade. She says that she couldn’t do it without me or the support system she has built. We help her “just keep swimming”, a saying that she holds on to in those tough moments. We always keep swimming, no matter what life throws at us, together. There’s another saying she says a lot, which I like. When people doubt her ability to pursue her goals, or try to put limits on her, she says: “Just because my path is different, doesn’t mean I am lost.” We walk through the world together, and that might seem different to some people, but we are definitely not lost. While we never expected our journey to look like this, we know we are exactly where we need to be. 

I am Service Dog Elvis and I have helped give my human her life back. You can follow my adventures on Instagram @servicedogelvis and my trainers, The Service Dog Project, at @servicedogproject!

Narcolepsy is a strange disorder. It’s strange because it centers on universal experiences: sleep and fatigue. Everyone knows what it feels like to be tired; everyone knows what it feels like to be sleepy. That said, there is a difference between narcolepsy and sleepiness, and it’s particularly important to recognize that fact when talking about an “invisible” disability like narcolepsy.

Many people lead entirely normal lives until they begin experiencing symptoms of narcolepsy. For me, it started in college. At first I just started sleeping more, feeling like I needed naps every single day. Then I started needing them twice or three times a day. Eventually, I started falling asleep involuntarily. I would fall asleep two or three times in a 60-minute lecture. I would get up in the middle of class and run laps around the building to wake myself up, only to sit down again and succumb to sleep almost immediately. I started to gain weight rapidly, and was sick all the time. I started to have intense, realistic night terrors that made me afraid to get into bed at night.

While all this was going on, I was a freshman in college and I assumed that this must just be a result of my failure to take care of myself, a consequence of staying out late at parties and reveling in my newfound freedom. So I tried to buckle down: I cut back on socializing, spent more hours in the library, tried to maintain a proper sleep schedule. But it only got worse as time went on – my grades started to slip, my relationships became strained and I fell into a deep and unrelenting depression. I felt like my whole world was falling apart because I could no longer trust my body, and by extension, myself.

I didn’t find out I had narcolepsy for a long time, so I had no word to use to try to explain these events to myself, or to others. I tried to describe how different this was from anything I had ever experienced before. I tried to prevail upon professors and administrators to hear how much I was struggling to understand what was happening. But for the most part, all anyone heard was how tired I was, and that was simply not excuse enough.

I sought out doctors at many different institutions and with many different specialties. They ran many tests that consistently came back normal; my symptoms were simply not enough to make any kind of definitive diagnosis. After receiving that message so many times, from so many people, it stopped being about my physical body. It started to be about me as a person. I was simply not enough.

I spent a long time feeling like I was coming up short, even after I was diagnosed. Even now, I sometimes ask myself: do I really need a nap or am I being selfish? Am I just lazy? Sometimes these questions get bigger and scarier: will I ever find someone who can love and accept me given my needs and circumstances? Will narcolepsy keep me from achieving my dreams?

But recently I also discovered that I’ve finally stopped blaming myself. It took hard work to come to terms with my disability and to incorporate it into my identity. I won't say that every day is easy, but I will say that having narcolepsy forced me to slow down, to look around and appreciate my strength, tenacity and conviction. It dared me to appreciate the joy of uninhibited laughter and the satisfaction of a hard-won achievement. Perhaps most of all, it taught me to embrace those who can embrace all of me, who don’t see my disability as a barrier, but as one part of who I am.

I didn’t get here alone. I wouldn’t be where I am today without the support of others: fellow PWN (People With Narcolepsy) who have inspired me and lit the path for me during one of the darkest moments of my life, my therapist who continues to help me find compassion for myself, my friends who have stuck with me even when I wasn’t much fun to be around, and my family who have been unfailing in their efforts to understand my disability and champion efforts to cure it. I wouldn’t be where I am today without you all.

I am different. Narcolepsy makes me different. My “tired” is distinct from yours, my “sleepy” is not the same. But in that difference, there should be power, not shame. I’m proud to finally be able to see that for myself.

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As a child, I was told that I was prone to seizures, but I never thought I would experience them as part of my day to day life.  Everything changed, however, the first day of orientation during my freshman year at Wheaton College. 

 I spent the day like everyone else - moving into my dorm room, unpacking, saying goodbye to my mom and saying hello to the next chapter of my college life.  

And then it happened.  I was out with some new friends, eating pizza, when a piece got stuck in my throat.  Seconds later, my right arm lost sensation.  I started to lose consciousness.  I screamed for help.  I thought I was dying. 

 I was told my seizure lasted for a few minutes; I fell out of my chair and my body shook uncontrollably on the floor.  EMS came immediately and rushed me to the hospital.  

From that moment on, my life shifted. Suddenly it revolved around regular visits to doctors and  hospitals, as well as frequent testing (MRIs and EEGs). I also had to try out different seizure medications to find the one that was the best fit for me.

 In my college years, if anyone mentioned the word “epilepsy” or the word “seizure” I couldn’t tolerate it.  I worried about my future.  Would I graduate college?  Would I get a job?  Would I have friends? 

Around this point in my journey, I met Dr. Devinsky from Finding A Cure for Epilepsy and Seizures (FACES).  I have vivid memories of how I felt during my first appointment.  I don’t remember much of what he said when we first met, but I definitely remember that I was crying hysterically. Dr. Devinsky has played an important role in my journey. Over time, he found a medication to adequately control my seizures.  I am grateful beyond words.

 I have been seizure free for six years. This was a critical step forward in my journey, and it presented me with the next important transition in my life with epilepsy.I needed to decide how I wanted to live.  Was I going to live live with fear and or live with courage? Was I going to tolerate the fear of never following my dreams? Could I live with my  fear that my life would be crushed by my condition? Or, would I find  the courage to persevere? Would I find the courage to push forward?

I chose to live with courage.

I refer to this choice as “my acceptance.”  For me, it’s about finding a way to cope and live with the condition - for what it is - while living my life as fully as possible.  

Acceptance and life experience led to four big shifts in my outlook, and my life: 

BEFORE, I thought: People would not accept me because of my epilepsy; I worried they would doubt my abilities because of my condition. NOW, I can see that people recognize how capable I am - based on my performance, rather than my epilepsy. 

BEFORE: I could not tolerate epilepsy.NOW, I am comfortable with my epilepsy, and I can talk about it openly.

BEFORE, I thought:  I could never drive or socialize freely.NOW, I have my license and drive myself to and from social events with friends. 

BEFORE, I thought: I was at the mercy of my disorder, loaded with anxiety and fear. NOW, I am on the right medication and have educated myself about my condition. My choices make me a healthy and functioning person. 

I’ve come a long way…

As a girl, I didn’t understand the word.  

As a young adult, I couldn't handle hearing the word.

Now, as a woman, I can talk about my condition and say: epilepsy is a part of me.

My name is Jane and I was born in Chicago. Soon after my birth, doctors realized I had cerebral palsy.  My CP resulted in physical and cognitive deficits. I have right arm weakness which prohibits me from doing two-handed tasks. My attention deficits, slower processing speed, and problem-solving skills affect my academic and vocational performance if accommodations are not granted. 

For these reasons, the Americans With Disabilities Act (ADA) has played a crucial role in my education. Because of the ADA, I was able to graduate from high school, college, and graduate school. Having my CP-related deficits did not make excelling easy. I had to work twice as hard as the typical student without a learning disability and I had to be pretty resourceful to get around my one-handedness in school and graduate training.  

The ADA insured that reasonable accommodations would be made during my entire schooling. As I write, you will see what is meant by “reasonable accommodations.” For me, it began when I began experiencing academic difficulties in fourth grade. After receiving a neuropsychological evaluation that revealed my deficits, I started receiving accommodations. The accommodations included receiving extended time on exams and projects, getting the help of a peer note-taker, and getting access to class material prior to the start of each semester. I needed extended time because my processing of information was slow, a peer note-taker because I was a slow writer, and access to class material would allow me to study in the summer so I would not lag behind the class because of my slow reading.  The accommodations leveled the playing field for me so that I could demonstrate my intelligence and not be hindered by slow processing and reading.  

As I continued my education, my accommodations changed as the program demands changed.  When I entered graduate school to get my masters in Psychology, I needed accommodations that would serve me both in class and in clinic practicums. In class, I continued to receive extended time for exams and a peer note-taker. For clinic practicums, I now required audio recording privileges to take home after therapy sessions. Students in my program were generally not permitted to take home audio recordings of their patient sessions.  The Office of Students with Disabilities (which is responsible for ADA implementation in my program) arranged for special permission for me to take home the recordings of my patients so I could fill in the gaps of my therapy notes that occurred because of my slower processing speed and working memory deficits. Physically, I had to learn compensatory strategies to manipulate testing materials. An occupational therapist taught me ways to maneuver materials using one hand. She taught me to use therapy “sticky mats” to keep things in place and ways to grab materials in a seamless manner during sessions with clients. The occupational therapist also suggested using a suitcase with wheels to carry all my books and materials to the clinic. Again, the faculty recognized by unusual changes in procedures as “reasonable accommodations” since they were protections offered by the ADA. 

The ADA applies to all individuals with disabilities in all levels of education and employment. According to the United States Department of Justice Civil Rights Division on the ADA:‍

“This law is one of America's most comprehensive pieces of civil rights legislation that prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life -- to enjoy employment opportunities, to purchase goods and services, and to participate in State and local government programs and services. Modeled after the Civil Rights Act of 1964, which prohibits discrimination on the basis of race, color, religion, sex, or national origin – and Section 504 of the Rehabilitation Act of 1973 -- the ADA is an ‘equal opportunity’ law for people with disabilities.”‍

The faculty members in my program were unaware of how the ADA applied to students in graduate school. Most assumed that the ADA only applies to students in secondary undergraduate programs. Their incorrect understanding of the law and reluctance to understand my eligibility for accommodations in graduate school prompted me to seek the advice of legal council. With the help of an attorney advocating for my rights, the faculty began to comply and grant my accommodations. The main reason colleges have a center for students with disabilities is because of the ADA for students. Unfortunately, in my case, my school’s Center for Students with Disabilities was unable to be helpful. Thankfully, the law is there to protect people in my position. 

I am now working at the Children’s Hospital of Philadelphia. I continue to use the same accommodations that I used in graduate school in my work today.