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Imagine waking up every day terrified that someone was going to make fun of you because of the way you look. I’m not talking about a bad hair day or because your shirt is on backwards. I’m talking about being born noticeably different and being self-conscious about it every second of the day.

That was me.

Being born with two fingers on my left hand and a shorter left arm was rough on me as a kid, physically and emotionally. From bullying to being left out of some activities like the monkey bars, it was hard understanding I was different. Depressionanxiety and anger filled my head and led me down some bad paths of drugs and drinking. Adding to the problems, I was diagnosed with type 1 diabetes at 19. As I sat in the hospital bed, a nurse explained to me how my life was going to permanently change. I couldn’t stop thinking, “Disabled and diabetic? There has to be a reason for this.”

I decided I needed to help people in order to help myself stay on track and switched my major from political science and law to exercise science and health promotion. Over the last seven years, I’ve built a variety of successful fitness training programs and businesses, helping hundreds of people lose thousands of pounds. I now run a successful online training business and travel the country as a keynote speaker, youth speaker and overall inspirational speaker.

Here are five ways fitness saved my life:

1. Confidence.

Stepping into a gym on day one was miserable — I won’t lie. But it was the best decision I’ve ever made. My confidence was at an all-time low when I first started going to the gym, and I told myself I wouldn’t be able to work out because I’m disabled and was worried about people judging me. The problem wasn’t the gym or other people.

The problem was me.

Once I got over myself and my self-sabotaging thoughts, I found myself adapting and working out without limits. I started being confident in my abilities. As I made the gym a priority, I started being more confident in my potential. Over time, I’ve built a body that people aspire to build even with my “disability,” and my confidence has gone through the roof because I proved to myself that I can do it.

2. Learning to fail forward.

The best lesson I learned from the gym is that failing is not all that bad. When I first started going to the gym, I couldn’t lift heavy weights at all and started blaming it on how I was born. Over time, I started failing less and getting stronger. As I grew in size, I definitely grew mentally, understanding that with failure comes lessons — lessons that provide an opportunity to succeed. The only way to fail is to give up. Now, each failure in the gym or in life is just a stepping stone to future success.

3. No limits.

How can a guy with no hand do pull-ups or deadlifts? As an adaptive person, I needed to adapt so I could work out and build the body I wanted to. I found lifting hooks that I attached to my arm, so I could do all the exercises other people could do. I took it past ability and currently hold four state records in powerlifting, deadlifting 630 pounds missing a left hand. I learned all limitations are self-imposed. There are truly no limits in your ability to win; it may just take a little adapting. The hopeless thoughts disappeared as I realized I can do anything I put my mind to.

4. Improve, not impress.

Before getting into fitness, everything I did revolved around other people’s view of me. The way I dressed, the way I acted — even the way I lived reflected my desire to impress other people. I was a prisoner to my own perception of myself based on how I thought other people saw me. As I began to see progress in my body and my mindset, I started living for myself and focused on improving myself instead of impressing other people. The anxiety of being different disappeared as I fell in love with progress in the gym. Improving myself in the gym helped me accept how I was born and understand that anyone willing to judge me probably has problems far worse than mine.

5. Obstacles to opportunities.

Day one in the gym makes you realize you are pretty far from being a record-holding powerlifter or aesthetic physique model. One of the toughest obstacles to tackle is understanding where you are now does not limit where you can be. With time, consistency and dedication, you will overcome every hardship thrown your way.

It wasn’t easy. But it was worth it.

I struggled. I quit. I doubted myself. But I kept going. I watch my body change and my strength increase to levels I thought were impossible. Come on, a person with diabetes and a disability deadlifting 630 pounds and benching 330 pounds, balancing it on his missing hand? No way. But it happened. I’m living it.

Getting into fitness helped me turn my mindset back into an opportunity to inspire people around the world. I am who I am today because of how I took a seemingly negative situation and made the most out of it.

Do what you can with what you have. All limitations are self-imposed and I really mean that. I spent so much time convincing myself why I couldn’t when, in reality, redirecting that energy to adapting and succeeding is all I needed to do. Lifting weights did much more than improve my muscle mass — it taught me how to overcome adversity, one rep at a time.

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It has been some time since I visited an otolaryngologist. I felt this kind of doctor was one I could leave in my past. I had thought about it when making the appointment and then the thoughts of childhood came rushing back to me, again, a week before the appointment. A week before, all I could think of was the possibility of an audiology exam. I was sure to have one as I wrote in the preliminary paperwork that I had a perforated left eardrum. Quickly, while in that headspace a week before the visit, I zoomed back into the past. I revisited these memories many times in the days approaching the doctor’s appointment.

As a child, I remember the audiologist and all her headphones, the sound proof door, a window between me and her, a puppet that she made dance around and light up, whether I got the hand signal to her right or wrong. I remember the painful headphones, some that pinched behind my ears, while an additional set, or sets, were placed on my ears. I sometimes had a hard time keeping my head up and would worry if these head contraptions would slide of my head. The final thing was always, what must have been, the pressure meter that went into the ear canal. I hated that feeling. I also didn’t care for when air was blown into my ears, nor did I like the final graph showing my hearing loss in the left, perforated drum. The frown-shaped curve on the paper among the boxes always upset me and made me feel “less than” in some small way. A way that only added on to the pain of the disfigurement I saw when I looked in the mirror at a big, slouched nose, paired with scar beneath it from a bilateral cleft lip and palate and the holes that lie below.

After the audiology exam, it was time for the waiting room, again, to wait for the doctor. I would do this routine every summer well into my early teenage years. He was a man with a thick Scottish accent. Many times it was not that I could not hear him, but rather that I could not understand him. He was a very good man, as were all the doctors on my team. The best and the brightest of a time when they were just beginning to understand what cleft lip and palate meant and how best to treat it. He, too, would look in my ears, put tweezers in my ears, blow air in my ears, and look inside my mouth. My notorious gag reflex was, and is, still a problem today. Nothing can really go up to the center of the top of the palate without my oral defensiveness kicking in. All routine visits went this way until my teens.

Special visits, or “non-routine” visits would be more involved. Specifically, I remember sitting outside the office alone, at age five or six, after having finished an appointment with him. My mother stood with him in the examination room talking to him about the impending pharyngeal flap surgery to be conducted by my plastic surgeon and him.

I felt so alone in that moment, knowing they were discussing me, knowing something would happen to me that would not be pleasant, and thus was not for my ears to hear at this time.

It is amazing how a feeling can be so imprinted upon you for all of eternity.

I will be well past 90 years of age before I forget that moment of being — both physically and mentally — alone.

Later in middle school, the otolaryngologist wanted to try and graft the perforated eardrum. The perforation was a result of many, many ear infections during my infant through elementary school years. The graft did not take. I was 13 years old at the time. I had difficulty coming out of the anesthesia because it was both administered through gaseous vapors and intravenous drip. On top of the high levels of anesthesia in my system, the recovery nurse (must have) administered some narcotic.

All these drugs combined in my small body and suppressed my breathing, leading to a near death experience I would not wish on my worst enemy. I gasped for breath and then sunk back into the sweet, seductive slumber only to force myself to breathe again by sheer will power. I fought hard breathing like this for what seemed like hours. I could not see anything, my vision blurred from contracted pupils. I could hear my mom, father, aunt, and nurse during those times that I would fight my way to the surface of pool in which I was drowning. I could hear the hope, and feel it too, in the form of a device they kept shoving at my lips and telling me to blow into so the large beads would then respond from the weak wind coming from my lungs. Then I would gasp their desired inhalation of misty oxygen from a mask that lay beside my face. All this for a skin graft that did not take inside my left ear. The hope was that it would heal the eardrum.

Fast forward to present day, where I trod the well-worn path. I begin in the waiting room. Then I had the audiology exam, followed by another visit to the waiting room, then back into an exam room to see the doctor. Today my hearing is still the same. The graph shows the same frown for the left ear. The doctor concludes what I already know to be true. There is not much that I can do about my ears, hearing, paired with constricted Eustachian tubes, and the maze-like sinuses. Yes, chronic sinusitis is another by-product of my formerly palate. The doctor goes on to say that surgery, at this time, would only be 50 percent effective compared to a non-cleft born individual. “No surgery is needed,” he says, “Just keep those sinuses irrigated daily,” was his advice.

And so, off I went, back in to the summer sun, as I had so many times before.

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Life throws us all curveballs and we learn to adjust to them. Sometimes those obstacles are tough to overcome and the path to the other side may be bumpy, but we get there nonetheless.

For me, the curveball came at me the moment I was born. Having been born without fingers on my left hand, I have learned to handle physical challenges as mundane as brushing my teeth and preparing meals to more complicated tasks, such as changing my squirmy daughters’ diapers, driving a car and typing. The physical challenges, I’ve got those down. And the older and wiser I become, I’m good with the emotional obstacles, too.

My confidence regarding my disability has been tested countless times. Growing up, our family moved around every few years due to my father’s position with the Navy. This meant that from a young age I had to learn how to build rapport and develop new friendships very quickly.

The constant moving was especially difficult for me because being the new kid made me a target — and having only one hand often made me an even bigger target. I was bullied, and once, I was pushed into my school locker and trapped there for three hours. I had no choice but to accept my physical differences, and eventually I looked upon my hand as something special and unique, not ugly and odd. These childhood memories are never forgotten; however, they helped shape my character and fueled my desire to help those who face similar challenges.

As a child, I was selected to be a March of Dimes poster child where my role was to help raise awareness and funds for research aimed at preventing birth defects. Although only a child, I was proud of my responsibilities. Eventually, we moved cities and my commitment to the March of Dimes ended.

After getting married and having children, I learned to adapt to whatever motherhood threw at me. I cared for our daughters, showed them and their friends that my hand was not going to limit me, and years later, I taught myself to knit and crochet sweaters for my grandchildren by watching instructional videos and adapting to my situation.

I’ve always enjoyed sports, but tended to engage in activities that didn’t require I use both hands — until my husband, Ray, encouraged me to join him on the golf course. I searched for resources that provided special instruction and equipment that would accommodate me but found very little. I attended a few clinics, watched how the instructors taught golf fundamentals, such as grip, stance and swing, and once again, I adapted until something clicked for me. 

My love for golf has deepened (I’m known by many as the “one-handed lady golfer”), and I recently founded Adaptive Golfers, a non-profit organization that brings the game of golf to people with different abilities. In addition, I volunteer as a course marshal at The Barclays, a world-class PGA Tour tournament, which rotates courses in the greater metropolitan New York/New Jersey area each year.

When I learned about the PGA Tour Volunteer Challenge, which honors volunteers and supports charity, I jumped at the chance to participate.

The Volunteer Challenge is a friendly competition designed to raise funds for non-profit organizations while recognizing the talent, passion and commitment of PGA Tour tournament volunteers in communities nationwide. 

Please consider voting for me now by selecting my name from The Barclays volunteer list. When voting ends on August 27, the tournament volunteer with the most votes will earn the opportunity to present a $10,000 check to The First Tee of Metropolitan New York. In addition, $5,000 will be donated to the winner’s charity of choice. If I win, I will designate the funds to March of Dimes, as I am the community director for one of the New Jersey chapters (funny how decades after being a poster child, I have been brought back into the fold of this important organization.)

Resilience and perseverance have always been at the center of my being. Whether it was facing 10-year-old bullies, struggling with knitting needles or being baffled by a golf club, I knew that although physically disabled, I was able to do what I set out to do. 

Today, the curveballs that come my way tend to be little white dimpled balls, and I’m prepared to take them on.


Update: Previous versions of this article referred to the company as Box Full of Spoons. The name pays homage to Christine Miserandino’s “Spoon Theory,” which is based on a conversation Miserandino had with a friend. In their conversation, Miserandino used spoons to explain the limited energy reserve (spoons) of people living with chronic illnesses. The theory took off and created a community of “spoonies,” of which Godley, is an active member.

As of 8/18/16, the name of the company has been changed to ChronicALLY Box. According to Godley, “We wanted theme of the box to clarify who the box supports. With the new name, it is clear that the box is for women who suffer with chronic illnesses, without much explanation. The target and mission is still the same, and we believe the rebranding will reach more chronic illness suffers in the long run to bring products that will be their allies for all things health, beauty, and pick me up!” 

The company is also offering a smaller version of the box, the ChronicALLY Treat Box, for $27.95.

Ally Godley was tired of the medical bills and test results that regularly flooded her mailbox, so she created ChronicALLY Box – the first subscription box for people living with chronic illnesses.

Godley, 27, lives with multiple chronic illnesses including irritable bowel syndrome (IBS) hypothyroidism; polycystic ovarian syndrome (PCOS); generalized anxiety disorder and chronic fatigue syndrome, and understands the challenges people living with chronic illnesses face. Her company’s subscription box, which launches in August, is designed to make the beauty and health routines of women with chronic illnesses easier.

“The products are meant to save you energy on health and beauty tasks that can be tiring,” Godley told The Mighty. “For example, dry shampoo delivered to your doorstep, so you don’t have to wash your hair as often. You also save energy by not having to make a trip to the mall.”

Inside a Box Full of Spoons

While this is the first box for people with chronic illnesses, there are other boxes on the market that cater to different health issues, including a subscription service for people with cancer, and those facing depression. ChronicALLY Box, is similar to other subscription boxes in that it ships once a month and contains between four and six full size products. A subscription costs $43.95 per month and ships worldwide. Godley is also developing a smaller, less expensive box. To give back to the community, ChronicALLY Box will be donating a percentage of all proceeds to nonprofits related to chronic illness.

Godley hopes ChronicALLY Box will lift the spirits of subscribers. “I wish people understood that living with a chronic illness is an everyday battle,” she said. “Not only physically, but also mentally and emotionally.”

 


Dear professors,

I enjoy learning a lot and am grateful for you taking the time to expand my knowledge. I want to be successful and am sure you want your students to succeed as well. I’m not a “normal” student though. You probably received the e-mail from the campus disability office about my accommodations. Yes, I am allowed extra time on tests, absence leniency, and the ability to leave the classroom during class. There are some things I can’t get accommodations for that I want you to know about too.

There are times when I can type and take notes fine. This is rare though. Most of the time I have a finger or knuckle dislocated and both activities are excruciating. This won’t be visible to you and I might not tell you because it happens so often. I often don’t know until the middle of class. If I suddenly stop taking notes, don’t freak out and assume I’m not listening. Chances are, I have turned on the dictation program on my computer to type for me.

I may show up to class in a brace or on crutches. This means I dislocated something — probably doing something that wouldn’t hurt a healthy person. I would prefer to not give you the whole story. I have been ridiculed enough for breaking my hand in yoga and playing charades. Just trust that if my injury will affect my work, I will talk to you myself about accommodations.

Sometimes I have barely dragged myself out of bed to be in class. I will not look my best on these days and will probably answer questions wrong if called on, due to this awful thing called brain fog. If I look like a zombie, please don’t call on me that day.

I am pretty good about communicating when I can’t be in class. There are times though where I might not get the chance to shoot an e-mail or make a phone call. I am not being disrespectful. I was probably rushed off to the OR for a procedure and they frown on taking phones into a sterile environment. The minute I can, you will hear from me.

When I do have an absence and a doctor’s note excusing me, please don’t ask for more details. If I feel like sharing why I was gone, I will. Some things are just too personal, especially if you are a professor of the opposite sex.

Lastly, you are privy to the information that I am ill. It is not something that I want broadcasted to all of my other classmates or professors. If I feel like sharing with them I will, but please do not expect me to share my experiences in class or assume other people know. I have to trust you with this information to be successful in your class. I know I am not your average student, but that doesn’t mean I am not trying my best to appear to be to everyone else.

I am a person first, a patient second.

I did not choose to be different, it just happened to be the hand I was dealt. Please respect my privacy and contact me directly for questions. Like every other student, I just want to do my best in your class.

Thanks,

Your Chronically Ill Student


I am a very kind, understanding person most of the time. But lately, quite a few frustrations have been building up inside of me, mostly about how people treat me differently because of my chronic illnesses and some of my struggles.

It’s usually just a short phrase – an interruption – someone quickly talking for me or even over me. Sometimes it’s a slight scolding, someone telling me what I need to do or shouldn’t do.

I tend to let most of these annoyances or frustrations slide, outwardly. I stay silent because I don’t want to make a scene. I don’t want to be seen as over-sensitive. I also don’t want my concerns to be perceived as an attack on someone just because they didn’t happen to know something. And of course, I don’t want to be the “PC Police,” zipping about with sirens blaring.

But man, some of these things are really starting to get under my skin. I know they also tend to bother many other people with disabilities, so I figured it’s time to get my three biggest frustrations out there, along with an explanation of why they anger, annoy, or hurt me.

1) When I’m having a conversation with a group of people and someone randomly shares tidbits of information about my abilities without my consent.

Let me give you a few real-life examples. We’re talking about cars, and someone says, “Oh it’s simple, just shift it quickly into reverse, and then…” I’m listening and interested in the conversation, but then someone else jumps in and says, sometimes in a hushed voice, “Oh… but she can’t drive.”

Why did they have to do that? If someone had said, “I was thinking about having Michelle pick me up at 8,” it might be appropriate to offer up that information, but in this context it’s not necessary. It didn’t add anything to the conversation. It actually interrupted the flow a bit, taking the spotlight
off the person speaking and pointing it at me and one more thing I can’t do.

Once, during a conversation about food choppers in industrial kitchens, I didn’t have much to say on that topic since I’ve never worked in one. However, I do use a small chopper and slicer in my own kitchen, so I inserted my thoughts on those. Once again, someone had to come to my defense and say, “Well she can’t physically chop vegetables herself with a knife.”

That wasn’t a piece of information I was going to offer up in that instant. I didn’t really want to
change the conversation to be about me; I was just trying to find a way to add my voice. And the thing is, I technically can chop vegetables with a knife, it’s just very hard, painful, rather dangerous, and yes, there are definitely days and moments when I cannot physically do it.

These might seem like really small things that shouldn’t get under my skin, but I don’t like constantly being reminded that I’m different than others, or that I can’t do certain things. I also don’t think letting people know this information will help them understand me better or make the conversation
go more smoothly. Sometimes it just creates awkwardness, and makes it seem like I can’t really speak for myself.

2) When people talk about me like I’m not actually there.  This happened to me just last month, while I was in the security line at the airport. I was using a wheelchair and my sister was
pushing it for me. We made it to the little conveyor belt and started removing our shoes, belts, and all the other things required by TSA.

A stranger came up and asked, “Hey, is it OK if I cut in front of her? I have a flight that leaves in 20 minutes and I have to rush through the airport.” I thought that was a totally appropriate question to ask, and I was happy to let her pass since I am, indeed, a bit slow getting through security checkpoints. However, I was taken aback for a brief second when I realized she said “her” instead of “you” or “y’all.” I responded with, “Yeah of course, please do!” with a smile and a slight gesture for her to go ahead. For just a second or so, she seemed completely shocked and a bit startled that I had been the one to respond.

This actually happens quite often to people with visible disabilities. I don’t know if it’s because people are scared to talk to us because we’re a bit different, or if they assume we might not be able to comprehend situations or speak to people. Or maybe it’s a completely different reason I haven’t yet cracked, but it is always unsettling to realize that people talk about you when you are right there, without seeming to acknowledge your presence.

Speaking for someone when they are right there adds to the stigma that people with disabilities are incapable of speaking for ourselves. If others see it happening, it might lead them to assume it is best to automatically speak to a caregiver or person with them, instead of the person themselves. And once that happens, the cycle of being spoken for, over, and about just keeps going.

Please talk to us! Even if you doubt we’ll be able to respond or acknowledge you spoke, a hello and a smile is a common courtesy I believe should be offered to anyone, regardless of age, race, gender, or ability.

Another example: I was out for lunch and drinks with a few people and after a while the person who drove me said, “I have to get this one home.” That stung quite a lot. I was being talked about like I wasn’t even a person, or like I was a misbehaving toddler or a spouse who had too much to drink.

I wanted to snap back and say, “Hey, why do you think that? Maybe I’m having a good time and want to stay longer?” But I didn’t feel like I had the emotional strength, and I also felt like I’d be butting my way into a conversation that I wasn’t really a part of anyway.

Yes, I was having a pretty bad pain day. Yes, I was having issues with some of my other symptoms. And, yes, this was probably fairly obvious to others. But I was enjoying my time out, and I am capable of saying when I want to or need to leave. Even if you think it’s best for me to do something, please ask me before making that assumption. I probably had about 30 more minutes worth of energy to use at the restaurant. Trust me, I keep really good tabs on what my body needs.

On the way home in the car, they told me I just looked like I was hurting and it would really be best for me to leave. I wish we could’ve had that conversation while we were out instead. I appreciate that they were concerned about me. Maybe they didn’t want to bother me by asking. But the phrase “I have to get this one home” just sounded negative to me — almost like they didn’t want to leave, but I was dragging them away. Or maybe they wanted to leave, and used my condition as an excuse.

Maybe I’m being a tad dramatic with my suppositions here, but those words bothered me for many reasons. Being talked over adds to the stigma that those with physical disabilities are unable to speak for themselves and make decisions independently. It also makes me feel voiceless, and I’m guessing not too many people enjoy that.

3) When people parent me and ask questions like: “Should you really be doing that?”

I don’t need special treatment, I only need the accommodations I will request myself. I’m not fragile; I don’t need to be protected. I know my body better than anyone else, and I know my limitations. I know what I am capable of doing and what my body can withstand. I don’t need to hear something like: “Are you sure someone with your condition should be doing that? It’s a really bad idea.”

When I’m having a good day and feel like fully taking advantage of the chance to finally be a bit spontaneous and step up onto a little rock and pretend to balance, or do some other silly, slightly childish thing, I’m going to do it! I have to find my smiles wherever they’re at.

I have the amazing privilege of having good days where I might even be able to let go of my cane for a few fleeting minutes and pretend my body is a tiny bit like it used to be. I don’t want to be scolded for doing that! I wouldn’t put myself in danger and randomly do this on a regular or bad day. So when someone voices concerns like this, it acts like a weight, dragging me away from the happiness I found and exchanging it for a place of otherness and inability.

In addition, being “parented” by others gets annoying. I am adult, and having voices constantly chiming in on what I should and should not do makes me feel infantilized.

So, to sum this up: I’m getting incredibly frustrated with being spoken for and being spoken over.

Half the time, the things people tell others for me and/or about me are actually wrong and not what I want, think, or need!

I was shy for most of my life. I don’t like confrontation. So if someone’s eagerness to help me is misguided or uninformed and we’re in public, I’ll most likely choose to let it slide. I don’t want anyone to get angry and defensive or say I’m ungrateful. It took me forever to be able to find a voice and be OK with saying what I need and what works for me, as well as what is difficult or impossible for me. Now that I’ve started being a bit more vocal about my struggles, so many people are trying to be helpful, which is awesome!

The thing is, in their eagerness to be helpful and aware of my limitations, sometimes they’ll bring them up in a way I don’t really like. That’s not only frustrating for me, but it’s also embarrassing. Most importantly, though, it perpetuates a stigma which will only continue to drag people down unless we work against it by making small, subtle changes in how we interact with others.

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