“Repeat after me: newspaper, rose, hamburger”.

No response.

“Ms. Smith, repeat after me, newspaper, rose, hamburger”.

No response.

The clinician looked at 22-year-old me and said, “Ms. Smith has progressive Multiple Sclerosis – this is a very severe case.”   This was my last day at my clinical placement, it was all too much for me to handle.

I was diagnosed with Multiple Sclerosis in 2012; I was 22 at the time.  They were not sure what was wrong with me at first.  I was a frail, 20-something college student, following a strict “vegan diet” to cover up underlying issues with food and chain smoking American Spirits – I was the poster child for malnourishment and ill health. But my symptoms had suddenly become much more serious than just poor general health.  My symptoms consisted of going blind in my right eye when overheated, stressed, working out, eating soup, drinking coffee, sitting in fluorescent lights, smoking, drinking, sitting in class, putting on eyeliner – okay, I was basically blind all the time! For a long time though, I hid my symptoms. I would tell my friends, “It’s getting better!”

I went through a year of tests – spinal taps, blood work, MRIs, you name it.  My mother has had Multiple Sclerosis since 1998 and with my family history and the nerve damage in my right eye, the doctors wanted to be thorough.  One hospital discharged me and told me to take vitamins. After a year of multiple hospitals, cities, and doctors, I was diagnosed.  Multiple Sclerosis, according to the National Multiple Sclerosis Society, is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and the body.  No, I wasn’t going to die – but it sure felt like that sometimes.

I was a Speech-Language Pathology undergraduate student at the time and my final placement was at a rehab center in Brooklyn.  I could tell my professors were nervous about sending me there after hearing of my recent diagnosis, but I felt positive about the placement; after all, I had been living with my mother having this disabling disease my whole life.  I even wrote in one of my papers that I wanted to work with adults with neurogenic disorders.  At the time, I don’t think I realized how much this placement would affect me.  One client I met had progressive Multiple Sclerosis, and her mind was gone.  No responses.  No eye contact.  No “connection” to her verbal language.  The clinician explained that they saw her decline and watched this disease take everything she had to offer. I was a good student. Straight A’s, always punctual, engaging and communicative.  I stopped going.  This was my final year of school, and I just gave up.  It was too much.  Luckily, Marymount Manhattan College has wonderful and empathetic professors who understood what I was going through and changed my placement to a preschool. I will forever be thankful for that.

Now that I’m in graduate school, I look back on those moments of weakness in the first months of my diagnosis. I am now, a completely different person.  My Multiple Sclerosis has changed me, and for lack of a better term, for the better.

I left New York City in 2014 to move to Philadelphia.  Philadelphia was closer to my parents and had cheaper rent.  I had always an interest in nutrition, hence my vegan diet at such a young age, and I started learning how to take care of myself through nutrition.  I started accepting that my condition was incurable, and I needed to handle it.  I chose to stop taking my disease-modifying drugs, which left bruises all over my body, and manage this disease in a more holistic fashion.  I kept up with my vegan diet, but incorporated more whole, plant based foods.  I started juicing, eating raw foods, and exercising daily.  Now, by no means, am I perfect at this point.  This has been a journey and quite the process.  In early 2015, I met my future husband, and we moved to Colorado a year later.  Still eating whole foods and managing my Multiple Sclerosis naturally – I remained symptom free. I started my graduate degree in Speech Pathology, and my Multiple Sclerosis was nowhere to be found.  I felt like I healed myself.  I wrote a blog and gave diet and exercise advice to everyone who asked (and people who didn’t ask).

And then, in 2017, I forgot how to walk for the first time.  After a year of a vigorous running schedule, graduate school and a miscarriage, my body said no more. My diet was good, but it wasn’t great.  As cliché as this sounds, life happens.  Things take the back burner – things that shouldn’t.  At the time, I was off disease modifying drugs for 3 years with no symptoms. I became lax.  I had too many glasses of wine some nights, and living back in Philadelphia, too many vegan cheesesteaks.  Just when I thought I was done with this disease, I was right back where I had started – in that god awful tube for another MRI.  My legs were weak and shaky and I had no feeling in the left side of my body. Once again, Multiple Sclerosis wasn’t going to kill me, but it sure felt like that.

I have a lot of flaws and a lot of things I do not like about myself.  But there is one thing that I’m pretty amazing at: I don’t take no for an answer.  Multiple Sclerosis has taught me that.  I can barely walk? Nope, not happening.  I took it to another level.  I stopped running, even as much as I loved it; I felt that it was too much on my central nervous system.  I started doing yoga instead – and practicing meditation. I stopped drinking – it didn’t do anything for my body. I began asking myself a question every day when waking up – what can I do for my body and my health today? What is the best for Monica? I continued eating a whole food, plant based diet and started eating 9-10 cups of raw leafy greens a day. I also began supplementing with vitamin D, which is great for people with Multiple Sclerosis.  

When asked to tell my story I find myself thinking – well what part?  Do you want to know about the 22-year-old that couldn’t handle her clinical placement due to an unfortunate diagnosis, who you could find on East 90th street chain-smoking?  Do you want to know about my years of healing where I became a spokeswoman for healing multiple sclerosis and then miserably failed by losing my ability to walk? Do you want to know about my current diet and how I overcame failure?  Ask me for my story in a year, and it will be longer. There will be more successes along with hardships.  With or without an unfortunate diagnosis, life goes on. Our story lengthens as we grow as individuals.

Repeat after me, “hamburger, rose, newspaper.”

Today, I can repeat.  And that’s all that matters.

Since the age of two, when I incurred a spinal cord injury, I have used a wheelchair. One of the most complex parts of living with a disability is handling the way the rest of the world receives you.  I am a super observant person and feel like often I am met with people being unsure of how to move, communicate, or simply coexist with me.  This has led me to a concept that I’ve integrated into my life called, “Hosting Your Own Party.” What I mean by this is that you have the opportunity to either lead or to host situations which might be totally awkward, and turn them into light and controlled moments. How do you do that? First, you must remember that you know yourself and your disability better than anyone! So, below are the steps on how to Host Your Own Party:

1. Look the Person in the Eye and Greet Them:  People will often rush to one of two things: help or get out of the way.  I think reminding others that there’s no rush and that everything is under control is helpful.  We’re all human beings and no one’s going to bite… yet!

2. Be Clear and Precise: Whether you need help or assistance with something, or do not want help (for example getting in and out of an Uber), I’ve found that clear communication has been my best friend.  For example: I say, “I do not need help getting in the car.  I just need help with my wheelchair.”  Now, a lot of people don’t hear you or believe you, and rush to help you regardless.  This is your moment to stop and remind them that you’re the host, this is your party, and they’re not going to grab the reins on this one!

3. Be a Coach: I was lucky and grew up with a coach for a Dad. I’ve found a lot of success in offering positive reinforcement when dealing with someone who seems nervous around me.  For example - back to getting in and out of an Uber – I’ll tell the driver, when they’ve helped me in the way that I’ve asked, “That’s great. Thank you so much!”  And if they happen to get grabby, and try to help in ways that I haven’t asked for, I’ll tell them simply and clearly, “No, don’t do that. Thank you.”

4. Give Yourself Credit: By taking hold of these situations in your life, you give yourself the confidence to know, “You got this.” It takes practice, and you need to do the reps.  This “hosting your party” thing doesn’t just happen overnight, but over time, being disabled can become really powerful. It can make you realize that you can do anything as long as you’re doing it in your own way.  Give yourself a pat on the back.  You’ve accomplished a task that required another person coming into your party and you’re the one who got them there!

5. It’s Not All About You: One of the secrets of living life with a disability is to give others the opportunity to feel helpful.  Remember that kid in the first grade who was just dying to help the teacher? We all have that little kid inside of us and you’ve given someone that opportunity to reconnect with them.

6. Confidence is Key: Okay, I consider myself a pretty confident person.  I’ve been in a chair since I was two years old and have worked so hard to love and trust myself over the past twenty-eight years. However, there are days when I have to fake it. I choose to fake it because I find that even canned confidence feels better than none at all.

7. Costumes and Treats are Helpful: I respond REALLY well to rewards, always have. It was one of the ways I was taught to push my wheelchair as a four year old: “Ali, if you push to the end of the block, you can have anything in my purse!” my babysitter would say.  When I’ve had a tough day or a tough moment where all these tips that I’ve given haven’t worked, I go to the coffee shop and I get myself a treat. Maybe a brownie….  Even if I didn’t do great, I know I tried my best. “Costumes” in this context means that I like to wear clothes and accessories that make me feel FIERCE.  I need to feel like superwoman sometimes after pushing fifteen blocks, and looking down and seeing my favorite Doc Martens on my feet gives me that boost.

Everyone with a disability has their own style. It’s taken me years to find mine. These are tips that have helped me, and if one of them can give you a hand, I’ll be thrilled, because you deserve it!  Go out and “Host your party” to the fullest, in your own way. You’re kicking butt!!

Love and respect,

Your party planner Ali

Digby Webster and Tracie Sammut have made waves in the art and TV world – but successes aside, both face an uncertain future.

Digby Webster, a widely exhibited visual artist, was born with a genetic disorder known as Down Syndrome. Tracie Sammut, an actress who has been featured in classic Australian TV shows such as Home & Away and GP, and received a prestigious Logie Award for Special Achievement in 1993, shares this disability.

Digby, 30, and Tracie, 39, still live at home in the care of their families, who are anxiously watching as they take their first tentative steps towards independence.

Flying Solo follows Digby, Tracie and their friend Tom, 36, over the course of four years as they pursue their new lives, juggling their passions with new responsibilities.

Digby tackles fundamental skills such as money management and cooking, even undertaking a new job as he prepares for his newest exhibition. Meanwhile Tracie decides to take Tom under her wing and train him as an actor. But for Tom – now living on his own – pursuing his dreams of professional acting proves an uphill battle as he finds himself struggling with time-management, household chores and depression.

The trio's journey is chronicled in Flying Solo, a feature documentary directed by Australian-American filmmaker Ehsan Knopf, which premiered online on March 21, 2018, World Down Syndrome Day.

The film, made in close collaboration with its subjects, captures their hopes and the hurdles they – like many people with intellectual disabilities – hit along the way. It features frank discussions about disability by the subjects and their friends and families, as well as inspirational scenes of mentorship and friendship.

A social impact documentary, Flying Solo pulls back the curtain on the unexpected strengths of disability, revealing the unique contributions people with conditions like Down Syndrome can make to society. It also aims to inspire change around a chronic lack of access to supported accommodation, which maximizes independence for people with disabilities.

“People with disabilities need to be heard,” Digby Webster said. “I hope the film will show people a different kind of world and also help to create a more open and inclusive community.”

Flying Solo, which first began as a student short film in 2013, was inspired by the filmmaker’s discovery, as an adult, that he himself had a disability. Filmmaker Ehsan was 26 when he got the life-changing diagnosis of Asperger’s Syndrome, a form of autism. A year later, a friend showed him Digby’s artwork, prompting him to get in touch with the artist and make a film about his journey.

After meeting Tom and Tracie, Ehsan expanded the scope of the documentary to include their stories as well, encouraging Tracie and Tom to work together. The result was a series of acting workshops featured throughout the film.

Flying Solo can be watched online on Vimeo On Demand.

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For as long as I can remember, I have always had obsessive thoughts. These thoughts would make me do certain rituals; if I didn’t do them, I believed something bad would happen. That is what obsessive behavior can do. As a child, and even now at 29 years old, I have had obsessive thoughts such as needing to make sure the faucets in bathrooms are turned off completely or that my clothes have no spots on them. If I don't pay attention to these thoughts, I fear that there is a chance of a flood in the house or that people will denigrate me when they notice a spot on my clothing. The thoughts come and go. While I sometimes got fixated on these thoughts, they didn’t seriously affect my mental health until my college years. That was when I began to recognize signs of a possible disorder.

During my senior year in college, I began having the obsessive existential thought: "I don't like to see". This thought bothered me a lot. The thought was so powerful that I started believing that I did not really like to see. This thought caused me great emotional distress; what’s more, I started having other intrusive and unwanted obsessive thoughts. I was now caught in a spiral of thinking unwanted thoughts; they lead to anxiety and depression.  My anxiety caused a racing heartbeat, feeling nervous, scared and panicky. Simultaneously, my depression caused decreased appetite and concentration, fatigue, lack of pleasure and excitement as well as feelings of sadness. I knew something was wrong and I could not shake it away on my own. This was when I decided I needed professional help.  

My first stop for help was seeing a psychiatrist who explained to me about Selective Serotonin Reuptake Inhibitor (SSRI) medications , commonly known as antidepressants. I was hesitant to take any because I have always had bad reactions to medications. However, because of my trust in the psychiatrist, I started taking Zoloft. Over a span of six weeks, gradually he increased the dosage to 150mg.  With the 150mg of Zoloft, all of a sudden, I had more energy, better concentration, appetite and a more regular sleep cycle.  The psychiatrist felt that my symptoms were part of  Obsessive Compulsive Disorder (OCD), a specific type of emotional and behavioral difference. He recommended that, in addition to taking the medication,  I see a therapist who would provide  cognitive behavioral therapy (CBT)

I accepted his recommendation and found a therapist who specialized in CBT and I started seeing her once a week.  She helped me implement a daily schedule to control the obsessive thoughts, plan for pleasurable activities, and use my rational scrutiny to test my irrational depressive thoughts. Therapy was not always easy. There were times I struggled and failed, and times when I did not want to continue the hard work to get better.  As time went on, however, I found that I had an inner strength that made me trust my professional support system and pushed me to keep going; I knew that, eventually, I would get out of my episode. So, with months of hard work, in combination with my medication, my obsessive thoughts decreased and my depression and anxiety subsided.

My treatment team was a big asset to my life and well being. The therapies and the emotional support of my professional treatment team and my friends and family helped me get trough my struggles.  I believe that, without them, I would not be at the point I am at today.  The experience of living through severe bouts of OCD has given me emotional strength. I have learned over time to always stay positive and know that bad times don't last forever. We all live in an imperfect world in which everyone has struggles of one kind or another. OCD, anxiety and depression are my struggles.

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I have what’s called a facial difference or deformity. I was born with it, kind of. I’m not sure of the full story behind what happened to me, but I do know I spent the first six months of my life hospitalized as a result of something called a hemangioma. A hemangioma is a benign tumorous growth of blood vessels on the skin. My hemangioma went away but left a significant amount of scar tissue on one side of my face; it also blinded me in one eye and resulted in me having to wear a tracheostomy up until I was about three years old. Fun stuff! Every summer up until I was eleven years old, I’d have reconstructive surgery to correct the scars. I was very fortunate because in spite of my visible difference, my parents raised me the same way as my older sister. I went to regular school, we went on family vacations, and I got in trouble when I was bad. Just kidding, I was never bad! My mom and dad always encouraged me to be whoever I wanted and accepted me for who I am.  My parents also made an effort to protect me from a world that was not always so kind and when they no longer could, we came up with a short speech I could give children who asked the inevitable questions about what ‘happened’ to me; I’d tell them I was born with something that left scars on my face but the doctors are trying to fix it. I still use parts of this speech when people inquire about whether or not I was in a car accident or fire.

If you’ve seen the film Wonder or read the book, you know that the main character, Auggie, a little boy who is born with Treacher Collins syndrome, is homeschooled until 5th grade; I obviously was not. Starting school is confusing for everyone, but starting school when you don’t resemble the rest of your classmates is even more confusing. I attended a private school in New York City and although I was never outwardly made fun of by my peers for the way I looked, I had a few classmates that made sure I knew they thought I was inferior to them. In my opinion, it was a projection of their own ignorance and lack of empathy. I often felt alone and excluded but I never connected the dots, and even though I dealt with kids (mostly boys) on the playground or at day camp who called me names or ran away from me in fear, I never really thought about the fact that other kids didn't have surgeries every summer or had seen more doctors since birth than their age number. When I was in 6th grade, I became more aware that I was different looking from other girls in my grade and through a series of events over the next couple years, I got a taste of what that would mean for me for the rest of my life. It means that I will most likely always put people off initially and that no matter where I go or what I do—nothing changes who I am. Growing up, there are were a lot of things I never did because I was afraid of how I’d been received by kids I didn’t know, something I deeply regret because I think knowing the world was bigger than my school would’ve been extremely helpful to me back then. When I first got social media, I never uploaded pictures of my face. It’s almost laughable now because if you could see my Instagram you would see that I post tons of pictures of myself. It’s taken a long time for me to feel comfortable with my appearance.  Self-love is hard and even though I'm much more confident now, there are still things I don’t do because I’m afraid of how I’ll be received.

The truth is I’ll never be normal and sometimes I wonder whether certain things just aren’t in the cards for people who look like me. My difference or deformity will always be a thing that requires an explanation. Most recently, I had a woman who was waxing my eyebrows ask me if it was okay to wax around my mouth because of my ‘burns’. Beauty is a privilege. It’s easier to be brave when you’re beautiful or even just normal-looking. It doesn’t mean your life is easy or perfect, but the fact is, we live in a society where physical appearance is regarded as a measure of worth and is rewarded as a badge of honor. When you’re constantly being reminded that your physical appearance is problematic, it’s going to inform your behavior, your feelings, your relationships, and everything else.

I'm not asking you to feel bad for me.  My difference doesn’t stop me from having a great life full of friends and family who love me. It doesn’t stop me from having amazing co-workers and casting people to be on cool reality TV shows. It doesn’t stop me from being a huge wrestling fan or loving the Muppets. Though I’m currently single, I’ve been in relationships before. I know that my facial difference will always be an eventual topic of discussion, just like I know when people meet or see me for the first time a little red button of curiosity goes off in their heads. To me, that's perfectly reasonable and fair. Fielding questions from strangers about what’s “wrong” with me is not my favorite thing in the world, but it's something I've learned how to handle. My facial difference is not all of who I am, but it’s certainly a part of it and my experience living with it is the basis for a lot of why I am the way I am. I’m not afraid to be seen and I’m not ashamed, because I have no reason to be. It should be possible to be beautiful because of your differences, not in spite of them.

Like a lot of people I know, I have a bad habit of scrolling through Instagram and comparing myself to other women, including my own best friends on my feed and wondering why I can’t look like them. It would be nice to be “different” or “weird” in a way that attracts positive attention instead of the negative kind. It would be nice to not constantly feel like I’m participating in a competition where the playing field is not level. That will probably never be my life and while I don’t like to admit it because I fancy myself Wonder Woman, sometimes I wish I were someone else. There are days when I want to give up but then I remind myself I‘m a fighter and strong as hell, and I keep trying new things and putting myself out into a world that tells me I don’t belong.

Did you know that, contrary to what many believe, dyslexia and many other learning disabilities do not affect intelligence? Rather, learning disabilities are generally processing disorders which occur in the brain. In the case of dyslexia, this means that reading fluency is compromised.

Not only is dyslexia an invisible disorder, but it also carries a lot of stigma. Children with dyslexia are often treated as if they are “lazy” or “defiant” in school, when they may just be expressing frustration with their difficulty reading in various ways. Thankfully, attitudes about dyslexia are starting to change and many people with dyslexia have achieved amazing things. One such person is Gavin Newsom, the current Governor of California.

Newsom sits down to talk about his experience with dyslexia with Cheryl Jennings.

You can read more about Newsom’s journey with dyslexia here: How I found Strength in My Dyslexia Diagnosis

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.