livingdmd

[livingdmd]

Dating

A really late bloomer, I didn’t start trying to date until I was 29. This was largely because, as a transgender woman, I didn’t understand my own gender identity until I was around 28 years old. My dating life is further complicated by my diagnosis of Duchenne Muscular Dystrophy, and my use of a powered wheelchair. Due to all of this, one can understand why I was reluctant to date for many years. After I came to a place where I had a much greater understanding of myself and much improved self-esteem, I decided to “put myself out there”.  In doing so I learned a great deal about myself and how to present myself on dating apps in a way that best represented who I actually was as a person. What follows is a collection of things I came to understand through this process.

Getting Out There

What exactly does “getting out” entail? I think there are many different ways to define it, and that it is different for everyone. To me it simply means making plans to do things you enjoy in a social space.

For some people with disabilities, “getting out” has become a loaded term. Many typically abled people seem to think that the act of going outside as a disabled person is an act of bravery. The biggest example of this being the way people talk to a disabled person in public. Using phrases such as “Wow! So proud of you for being out and about!” or “Look at you, outside of the house. Great job!” infantilizes us and shows a great lack of understanding. And before you ask, yes people do say things like this to me, almost as often as people ask if they can pray for me. One time I was refilling my accessible van at a gas station and the person at the pump across from me told me they were proud of me for getting gas by myself. Another time, I was waiting in line for a concert and was approached by a person off the street who asked if they could pray for me saying “you never know, you might be cured”. All of this makes me feel like people think that my home life is lacking and that I am miserable and unhappy. This couldn’t be further from the truth. I am quite content with my life as it is now. I have great friends, hobbies I enjoy, places I like to go, and a positive outlook on life. Why don’t people ask if they can pray for random strangers on the street who aren’t in a wheelchair? It is because they assume physically disabled people such as myself need it the most. People often see a wheelchair and seem to assume that you are a miserable person.

Most typically abled people hold some number of misconceptions about what it means to be a disabled person. I’ve found that people are often afraid to ask us if we are able to do things like go to the beach, swim in a pool, or go bowling. These are all things I enjoy and can still do (albeit with some additional assistance). People seem reluctant to ask me if I would like to participate in these things because they seem afraid that they will offend me. However, what ends up hurting me more is being excluded from things I could do because no one thought to ask. This hurts way more than being asked if I want to do something like go to an amusement park and having to tell someone no (because I don’t think I would enjoy it since actually getting on the rides is too much for me personally). Of course I also need to know how people can best assist me, but that’s something I’ll get back to later.

When using online dating apps, having pictures of myself doing things I enjoy outside of my own home (or even things at home with friends such as Dungeons and Dragons) goes a long way towards dispelling any misconceptions people may have about my disability. It shows that I advocate for myself, that I communicate with others, and that getting out isn’t impossible for someone in a wheelchair. On top of this, pictures of myself enjoying life make me much more attractive to other people. Don’t take 6 selfies in your bathroom and assume anyone is going to believe it when you say “confident, outspoken, and funny”. You can write whatever you want on your dating profile. Having pictures that actually put meaning behind my words goes a long way in establishing initial contact with someone through dating apps.

Being Upfront About What I Want

Everyone communicates differently, and figuring out what works best for you is incredibly valuable. I am somewhat neurodivergent, which also affects how I communicate best with other people. Since relationships are built on communication, understanding I have always been bad at interpreting the signals behind someone’s actions has helped me tremendously in my relationships. Most people try to show their intentions through a variety of gestures, words, and actions to get the other person to interpret and correctly identify what they want. It seems like oftentimes these actions avoid directly telling someone what you want and rely on them deciphering the meaning behind your actions. To me this comes across as an elaborate game with rules that are difficult to understand. Outside of dating, the way I say things has often been misinterpreted and, as a result, I always end up overthinking what I should do or say. This always made dating seem incredibly tiresome to me, because I was constantly evaluating the proper choices. After I grew more confident in myself, I chose to avoid the dating “game” entirely by being upfront about what my expectations are and what I want out of a relationship. I make it clear the first time I invite someone out, that they know I am inviting them out with the intent to see if a relationship can develop. Even if my first encounter with someone is an hour long meeting at a coffee shop, I make sure the other person knows it is a “date”. It feels like people unfortunately tend to think of visibly disabled people as non-romantic and non-sexual beings who aren’t capable of being in a typical relationship. Setting expectations early seems to have kept my relationships from falling into a pattern where I end up investing too much energy in a relationship that was never going to go anywhere.

Meeting in Person, Sooner, Rather than Later

When I first started venturing into dating I would spend weeks trying to get to know anyone I matched with on an app before actually inviting them on a date. This may work for some people, but I found that this approach would lead to me investing way too much in people who often didn’t invest the same amount of interest back. For a variety of reasons, people on dating apps ended up dropping contact with me (ghosting) after weeks of constant communication when I made it clear I wanted to meet them in person for a quick date. Some people online lie about who they are, some people don’t have the intent of moving beyond internet communication, some people might get bored of you by the time you actually invite them on a date, some people are anxious and may just disappear, and a small number of people may be scared off by the idea of actually pursuing a relationship with a disabled person. The point is, this all led to me feeling like I was wasting a ton of my time. I decided to skip all of this and just chat with people I matched with long enough to see if there was interest, and then ask them to go out for a quick coffee/boba tea/smoothie date. This led to more dates (and often more second and third dates), got the awkwardness about the wheelchair out of the way quickly, and helped me move on quickly when something wasn’t going to work out.

[livingdmd]

Intersectionality

Having Duchenne Muscular Dystrophy and being transgender places me at the intersection of two identities. It can sometimes seem isolating when it feels like you have unique questions, concerns, and experiences that only other LGBTQIA+ people with disabilities understand. In some cases I've felt excluded from events hosted by LGBT friendly groups when they are planned without consideration for accessibility. In other cases, I've had thoughts that I want to share with other people with disabilities, but felt unable to share because I wasn't sure who could relate. I want to be someone who is visible among both communities and there for others who feel similarly and want someone to relate to.

[livingdmd]

Ordinary

I've found that, generally, people with disabilities that I have spoken with don't like being called brave, heroic, or inspirational for just living their everyday lives. Some of us don't like that our diagnosis forces us to take on obstacles that are unfair, difficult, and frustrating as a matter of course. Even when we go above and beyond, in areas such as advocacy and fighting for our own rights, some of us don't like being reminded that we don't have all the rights afforded to most individuals. Some of us don't want to be called "brave" for daring to speak up, when it shouldn't feel like it requires bravery to ask for fair treatment. Sometimes we don't want to be heroes. Sometimes we just want to feel ordinary.

[livingdmd]

Going With the Flow

Throughout my life I would often get caught up in plans that I had made for myself. Being greatly disturbed if anything ever went off plan.

To improve my general well being I’ve recently worked to adopt a mindset of enjoying the time I set aside for myself, regardless of what may happen. This has freed me of a lot of anxiety and overthinking. Often I would rely on the safety of playing video games, which to me were a place I didn’t have to worry about handicap accessibility or other barriers. Lately, thanks to this flexible way of thinking, I’ve been taking the time to explore more of the world outside my home. As I’ve explored myself recently, I have grown a little bit bored of video games, and grown more interested in exploring myself socially.

There are two sides to this however. I try to avoid resigning myself to the idea that something will be impossible. And going with the flow and simply accepting it can’t be done. However, I do have the means to address some barriers with a little extra planning. But even with the most meticulous planning, sometimes bad things happen. Miscommunications can lead to finding out something isn’t accessible at the last minute. Elevators can break. If I drive a long way somewhere and I find out the place wasn’t entirely accessible: I have decided will get the most enjoyment out of what I can and then find an opportunity to explore other things around me.

I often spent too much time waiting for the “right” moment to do things, and, as a result, I end up not doing anything. However, in my own experience I’ve found that the “right” moment rarely just comes along. You often have to make things happen yourself.

[livingdmd]

Purpose

I have found purpose through advocacy for individuals with Duchenne Muscular Dystrophy (DMD). The path I took to get to this point has been long and has led me to a great many places. When I first went to college, I wanted to design video games, so I started with a major in computer science. However, about a year into this experience, as I thought about what my future would look like, I began to realize that I would always feel like I was missing purpose in a career in computer science. The reason for this being that I wanted to make a real and positive impact on the lives of others. For me, computer science was not the path to creating this change. I began to think of other ways to have an impact. Having a rare genetic disease (DMD) and being mathematically and logically oriented, I thought I could go into genetics research. I switched majors to biochemistry, and in the later half of my degree, I began to work in a professor’s genetics lab. This was a very rewarding experience for me as I learned the ins and outs of laboratory work. Once I graduated with a biochemistry degree, I had another opportunity to volunteer in a genetics lab. Here I was often left with a variety of tasks to complete on my own. From spending many days in this environment, I began to realize I was still missing interpersonal interaction. I wanted to have a more direct and visible impact on the lives of others. Research is immensely important, but it often takes a long time before it has a measurable effect on individuals. I spent several years after this looking for a way to turn the advocacy work I had been doing part-time for years into a job that could support me. First I looked to genetic counseling, thinking I could connect my degree in biochemistry to my advocacy work. I attempted multiple times to apply for genetic counseling programs. Through several years of interviews, I learned a great deal about myself, but I also learned that genetic counseling was not the path for me. However, this journey did lead me to the field of social work, which has many ties to advocacy. I began to think that if I got a master’s degree in social work, I could add legitimacy to my advocacy work in a way that could lead to a well-paying job. It was here that I had made a mistake. Not in pursuing social work, but in feeling that I needed a degree to be legitimate. As I’ve mentioned before, this led to a crisis of sorts. I had been looking for something to validate my choices and my life path, so I could feel more secure in my own decisions. I was handing control of my self worth to others. From that low point, I began to focus on improving my sense of self-worth. I came to find that I had everything I needed to advocate effectively right in front of me. Although none of these steps along the way ended up being “my purpose”, they all provided me with valuable perspectives and knowledge that I have been able to leverage to advocate more effectively. My experiences are my greatest asset in helping others who are going through similar things to what I have gone through to achieve their life’s purpose and goals. I’m doing so, I can have an immediate, powerful, and positive impact on the lives of others.

[livingdmd]

Flight

Flying as a person with Duchenne Muscular Dystrophy (DMD) is an arduous experience. Because of my diagnosis, I need a wheelchair to move around. I prefer a powered one, because, due to my weak muscles, I can’t push a manual wheelchair. Power wheelchairs are very expensive ($40,000 to $80,000) and also do not fit in the cabin on an airplane. What this means is that, if you want to bring a powered wheelchair on a flight, it will be placed in the cargo hold with the rest of the luggage. Boarding before the rest of the passengers, I first have to take my wheelchair down to the bottom of the jet bridge where it will be gate checked. Here I am required to transfer to what is called an “aisle chair”. This “aisle chair” is basically a super skinny wheelchair with a hard seat that can fit in the small aisles in an airplane. I am then strapped in to this chair with a series of straps, so I can be brought through the aisles without bumping my arms, legs, and torso into the seats. Once I reach the row where I will be seated, I am then transferred over from the aisle chair to the seat. This entire process is tiring, time consuming, and leaves me feeling robbed of part of my dignity as a person. When I arrive at the destination, I am always the last off the airplane. I have to wait for everyone else to exit the plane before the reverse process can begin, where I transfer back into the aisle chair and am taken off the plane. Then, at the bottom of the jet bridge, I transfer to my powered wheelchair. This is what it looks like when everything goes smoothly. However, as we all know, not everything goes according to plan. Sometimes the aisle chair isn’t at the bottom of the jet bridge and I have to wait for them to find one and bring it over. Sometimes you have to deplane and repeat the process because of a minor maintenance issue. Sometimes when a person with DMD arrives, they find that their powered wheelchair has been damaged beyond repair, due to rough handling while being loaded on the plane. Reading this, your first thought might be about the cost. Thankfully, the airline is most often required to pay for the replacement chair. Now you might think that would be the end of it. However, it can take 6 months to a year get a new chair through this process. Meanwhile, the person with DMD is required to find another wheelchair to use in the meantime. This is not paid for by the airline. Families and individuals with DMD often have to rent a temporary manual or small powered wheelchair. This often robs the individual of much of their independence for the time they are waiting to get a new chair. People who need to use powered wheelchairs often avoid flight entirely because of the relatively high chance of this happening. Many, like myself opt for cheaper travel chairs that are far less comfortable, but aren’t as much of a loss when broken. All of this could be simply remedied by changing a few simple things on an airplane. The first of these would be widening the entry doors and expanding the galley area to fit powered wheelchairs. Secondly, airplanes could have several seats near the front of the plane removed. The system used to secure the airplane seats in place, is the same system often used to tie down a powered wheelchair, so it would be simple to secure the chair. Lastly, providing some kind of access to a bigger bathroom, that could allow an individual with DMD to use the lavatory if required. The biggest reason this hasn’t been done is that airlines want to pack as many people as they can on each plane, and this would require that airlines remove several ticketed seats from every flight. So in the end it comes down to money. This is only part of the many inconveniences I face when flying. The trip through security is almost always troublesome. Wheelchairs can’t go through the scanners, so this means that every time I fly the TSA subjects me to a security pat down. This is demeaning and often requires that the I be shifted around uncomfortably in my seat to accommodate the TSA employee. Once I get through security, I have to take a moment to recollect myself and my things and then make a carefully timed trip to the bathroom. I can’t use the in flight lavatory, because it is not accessible for me by any means. If I need to urinate on a plane, I have to use a portable urinal. This is extremely awkward in a public setting. If I need to do anything else, I’m shit out of luck. I have a flight day routine that I follow to avoid this on flights longer than 1 hour. Starting from the night before, I simply don’t drink any liquids until after the plane lands! Simple, right? This is definitely not healthy, but I really don’t want to have to go on the plane. Once I’m past security, I carefully watch the time so I can be sure to use the restroom as close to boarding as possible. By this time I am definitely dehydrated, but I get on the plane and pray I don’t need to use the restroom. I spend part of the flight worrying that drinking water in flight will prompt me to use the restroom, but I often drink it anyways because I know I need water to live. Depending on the source, delays can throw a very large wrench into all of this. If we have to deplane and reboard, I often don’t have time to go to the restroom again. Recently I spent 3 hours waiting around completely unsure if I could use the bathroom again before we took off. The first plane I got on ended up having a broken AC, so after waiting on the tarmac for an hour, we had to deplane. This meant I would have to repeat the entire boarding process, but I’d have no idea when we would board the next flight! This meant I could either use the restroom and risk missing the start of boarding or continue to wait. If I missed the start of boarding, this would require that I board the plane last. You might think that’s not a big deal, but it is for me since I then have to be dragged down the aisle like a piece of luggage in front of everyone and be stared at while I transfer to my seat. So I just had to hope that the added 3 hours wouldn’t result in me needing to use the restroom on the plane. Flying is a massive pain, but driving several days to get anywhere is too. I just hope that I eventually see a day where I can take my chair into the airplane cabin and that current advocacy efforts to make that a reality succeed.

[livingdmd]

Realization

(Content Warning: Potentially Triggering Discussion of Personal Mental Health Struggles)

In high school, my life began to diverge from my peer’s. This was when I really came face to face with the fact that I was not “normal”. As a way of coping with the declines in my physical ability, I began to look for ways to feel more “normal”. I began to develop a checklist of achievements I had to complete, and a set of rules I had to follow to become the “ideal man I was supposed to be”. I felt I had to excel in academics to make up for my physical shortcomings. I thought that if I met other’s expectations of me, I could appear normal to them, and then could start to see myself that way too. This eventually morphed into an unhealthy ideal of “professionalism” and perfectionism. I felt like I had to essentially put on an act of professionalism, and that this is how it is when you “become an adult”. I would often deny myself things that I wanted simply because, in my mind, they weren’t something that professionals were allowed to have or do. I thought I had to keep to this ideal to eventually get a salaried job that could cover my medical costs on top of the costs of living independently. This wasn’t the only area where I felt like I had to put on an act. I felt that when I was talking to anyone I had to act in a way consistent with their expectations of a “man with DMD”.

Throughout the time I was in school up until I started a graduate program in social work in late 2019, I never gave myself the chance to explore my gender identity and sexuality. I was preoccupied with managing my diagnosis, depression, academics, and other pursuits. I kept myself busy because it allowed me to distract myself from all of the things I didn’t want to think about. I greatly enjoyed my first two semesters in the program, and found that being in academia stimulated my mind in a variety of ways. However, midway into my second semester, Covid-19 came along and began to change everything. My classes shifted online, and I got less in-person interaction with my peers. In the end of my second semester, I began an emotionally taxing internship that I was not ready for. In the field of social work, you will often encounter people who are struggling with a number of different things. This was no different in my internship where I began to do case management with people that had exhausted most of their options for help and were either suffering from homelessness or close to losing their homes. I saw people struggling with some of the hardest situations I had ever heard of, and this rapidly depleted my emotional reserves. In combination with the pressures I had placed upon myself for years, I began to have panic attacks. I developed insomnia, and was unable to sleep for over 30 days. My mental health rapidly deteriorated and I lost a tremendous amount of physical function because I was so exhausted. For several months after my internship ended, I was in and out of the hospital and, at one point, I was so tired and in so much physical pain that I attempted to end my own life. I had realized that social work was not a good fit for me. However, I had already placed my entire identity in becoming a professional and had also concluded that social work was the only path to achieve that goal. Losing this, I felt like I had lost everything. I had completely lost my identity.

After several months, I eventually ended up in an inpatient psychiatric center. I was at my lowest point, and, believing I was going to die, I began to lament denying myself so many things to become what others expected of me. I thought that I would never experience being in a relationship, or being able to express myself in a way consistent with my identity. As I came out of the inpatient center and began recovering while on a new regimen of medication, I started to really consider what I wanted out of life. Around the same time I was struggling with all of this, a friend of mine came out as transgender. I began to wonder what exactly that meant, and in looking up information about this, found that I related to much of it. For many years, I had felt that I would love to wake up in a different body. I thought this was pretty normal, given that many people with a diagnosis of DMD would feel the same. However, as I began to think more about this, I realized that, even if I would still have DMD, I wished that I could wake up in a body that more closely aligned with how I felt about my own gender identity. After looking back over my life, I began to realize a number of things that I had simply written off as being due to DMD, were much more complex than that. I had previously come to the conclusion that, having DMD, I was stuck with a body that would never feel right and that was the entire reason I always felt uncomfortable in my own body. That there would always be a disconnect, because, as I lost function, my body would continue to operate in a way that was inconsistent with how I felt it should. I think this pattern of thought was partly a method of coping with my own sense of dysphoria. By mentally assigning it to be a natural result of DMD (something I thought I know a lot about) I could rationalize my feelings as “normal”. Setting this aside, and giving myself a chance to explore my own gender identity, I came to the conclusion that I wanted to transition and that this would make me happier as a person. I was right.

[livingdmd]

Pronouns

I don’t like pronouns. As I’ve been exploring my gender identity, I’ve found that all pronouns make me feel uncomfortable on some level, because, to most people, they all come with sets of expectations that I don’t relate to. I don’t strongly associate with a gender binary, nor do I see myself as existing outside of one. I find that she/they most closely approximates the expectations I want others to associate with me. Being called by the “wrong” pronouns doesn’t really bother me, but being expected to act in a “male” way does. I do know for sure that I don’t want to be seen as male or expected to act in a masculine way (even if I do sometimes). In other words, I don’t like the idea of gender roles and how many try to hold people to certain patterns of behavior. For me, the idea is a world where gender expression, presentation and identity can exist free from gender role expectations.

Physically I have always disliked a variety of typically masculine physical features like rough skin, body/facial hair, a deep voice, and my physical anatomy. For most of my life, my body didn’t feel the way it should, but I simply thought this was because I had Duchenne Muscular Dystrophy (DMD). As I’ve began and continued on HRT I’ve found that I feel much more comfortable in my own skin and I feel free to express myself the way I want. I’ve also come to appreciate some of the ways in which my body was changed by long term corticosteroid therapy to manage my DMD diagnosis. At 5’2”, I have a short stature due to the effects of growth. I never really grew facial hair and due to the steroids depressing the effects of puberty and testosterone. My voice was always perceived as androgynous over the phone and I was often gendered as female. Lastly, I always had a youthful appearance that is common among people with DMD. Since making the decision to transition, all of these things have become aspects of my body that I am happy with. To me these aspects are separate from pronouns, since they don’t change who I am on the inside. But these characteristics make me a lot more comfortable in my own body.

[livingdmd]

Making Connections

In trying to improve my self esteem, sense of self worth, and confidence, I’ve tried to stop apologizing for things that are beyond my control. Things such as being unable to keep to scheduled plans due to something like sickness, how another person interprets what I say, and the occasional roadblocks caused by lack of handicap accessibility. I also offer an understanding of this to other people by not taking it personally when these events happen to someone else and it affects me too. 

Recently I’ve been viewing elements of this as a fear of rejection. I tried hard to gauge what other people liked and tried to meet what I thought were their expectations of me. When someone (a friend or a date) has to cancel plans because of something out of their control, like becoming sick, and they apologize to me I worry that they may begin to feel pressured by a feeling that they owe me something for missing our plans. If this happens too many times I begin to feel anxious that the other person may end up rejecting me because of how our plans “never work out”. Some of this is definitely “catastrophizing” (or only being able to see the worst outcome) and some of this I think is from having a hard time gauging how much I feel a person is receptive to me unless I spend time with them in person. In dating this is especially anxiety provoking when I’m just meeting someone new. I begin to feel like I’m being pushy for asking to go on a date with someone when our previous plans didn’t work out. I know sometimes people will lie about being sick or something else to avoid a date they are having second thoughts about, but regardless of that I worry about driving someone away with this “pushiness”. I don’t do well when I am left to make assumptions like “they still want to see me” when it’s been two weeks and nothing has worked out between us. In writing this, I found that this fear was another form that a lack of self confidence and self worth could manifest as for me. I was worried that events outside of my control were forcing people to associate me with things I didn’t want to be associated with.

[livingdmd]

Planning

For most of my life I have been very particular about rules and I consider myself somewhat obsessive over making sure that everything is planned out ahead of time. Someone I know once suggested that this obsessiveness might be due, in part, to the fact that individuals with disabilities must constantly plan ahead to avoid possible roadblocks due to issues with accessibility. When going to a new restaurant I may have to consider where I’m going to find accessible parking, how I’m going to get in, what I’m going to need to do if I need to use the restroom, if I will be able to effectively navigate the space, and many other things. 

Even with all of this preparation, things can still go wrong. Elevators can break, construction can block accessible pathways, and people can park in van unloading zones. In the face of these unforeseen obstacles it often feels like the world itself is fighting against me. In one particular case, I went to watch a family member perform live on stage. Upon arriving at the venue, I was informed that the elevator (which was the only way for me to get into the building) was being repaired and was not operational. This meant that I had to return home without seeing the show. Thankfully, another family member was able to record the performance and I was able to view it later, but that did not change how upset and at a loss for words I was in the moment I learned I wouldn’t be able to watch in person. 

I often didn’t give myself the time to properly process these feelings of disappointment and frustration. Instead I would repeatedly tell myself that “there is no reason to be upset about something you cannot change” and simply shove my feelings aside. I think this pattern of ignoring my own feelings contributed to depressive thoughts and a tendency to give up on many things out of fear of being disappointed. I’ve since been more open with myself and my feelings about this. It is ok to take a moment to be frustrated, upset, and angry at how a disability changes the way I interact with the world. It is the reality I live in. However, it goes too far if I give up before even trying and ignore my own wants.

[livingdmd]

Perfectionism

It took many years of striving for perfection to realize that it was an unreasonable standard to hold myself to. Perfectionism warped my perspective and damaged my confidence in myself. Perfect was what was expected, so anything less was a failure to live up to expectations. If I performed perfectly, I was only doing what was expected, so it was not deserving of praise. This mindset left no room to build a sense of self-worth since the only options were achieving the bare minimum (perfection) or failure. I didn’t hold others to this standard, so why was I so harsh on myself? 

I have always been someone who puts a great deal of thought into everything and was always taking the time to carefully prepare my thoughts before forming them into words. For many years I essentially had a running monologue in my head that screened every thought and action to make sure it was perfectly acceptable to everyone and would not be misunderstood. This essentially fractured my sense of self and led me to feel like I was leading two lives. One being a curated and professional life that required strict limits on self expression to maintain its perfect image. The other was an authentic life where I expressed myself and my desires openly that I at least partially hid from everyone, my closest friends, family, and eventually myself. This being out of a sense of shame that somehow the way I wanted to live was incompatible with the requirements of a professional image or a “normal” way of life. The burden of maintaining these two lives was far greater than I realized and it slowly built up my anxiety and caused a great deal of stress from day to day. I felt incapable of being proud of myself or my accomplishments and that I could not have what I truly wanted. This was immensely painful.

Once I realized how strongly I was denying my own sense of self and the pain I was inflicting on myself as a result, I began to look at treating myself with more compassion. I began to let myself have the things I wanted. This helped me to realize just how much I had been censoring and suppressing my self expression in every aspect of my life. The biggest of these aspects being my own gender identity, which I had tried to build around others expectations of who I should become. In reality, I had never given myself the time or freedom for self exploration and the discovery of my own gender identity. Letting these inhibitions go and living more authentically, I found that my anxiety and stress seemed to alleviate itself. I felt more at peace, and felt a sense of compassion towards myself grow. I realized the importance of treating everyone compassionately, especially yourself.

[livingdmd]

Pretending

You are only on earth for a short time, so why spend it trying to be someone you are not?

[livingdmd]

Acceptance

In learning to cope with a diagnosis of Duchenne Muscular Dystrophy, I have often confused acceptance with denial. I denied being upset about the impact my diagnosis had on my everyday life and essentially trained myself to be apathetic towards it. Believing that simply not caring about how things impacted me was the same thing as acceptance, I could tell myself I was well adjusted and had come to terms with DMD. In reality, I was not allowing myself to feel and process the negative emotions that come with being faced with a world that is often hostile towards me. Over time, this denial of negative emotions led to an avoidance of many things that I held interest in. I would convince myself that I didn’t actually want these things, so that I wouldn’t have to face the possibility of finding out how DMD might interfere. 

When I was younger I was curious about the guitar. Many of my dad’s favorite musicians were prodigious guitar players, and I loved hearing the sounds they could make with their instruments. My dad was also a guitar player himself, and I tried working with him a couple times to learn how to play. However, I found the guitar somewhat difficult to handle because of my own small hands and weak muscles. Holding the instrument was difficult, and I had trouble applying enough force to the fretboard. Early on, I came to the conclusion that no matter how hard I tried or how skilled I became, there would be a point where DMD would limit my ability to play the instrument the way I wanted to. Not wanting to face this idea, I gave up and told myself that I simply wasn’t interested in guitar like I had thought I was. 

Some time later, when I had reached a better understanding of my emotions around DMD, I decided I wanted to buy a guitar and actually learn how to play it. This time with the mindset that as long as I had fun with it, it wouldn’t matter if my weak muscles limited my technical skill. I found this attitude freeing and I was far more open to finding ways around my limitations. To my surprise I quickly found that there was a simple solution to the problems I had faced when I first looked at learning the instrument. Namely, a three-quarter scale guitar. These guitars weighed less, had a smaller neck, and had less tension in the strings. This simultaneously addressed all of my concerns. Of course, like anyone else, I would still need to practice before I could get the guitar to sound the way I wanted it to. The first time I plugged the guitar into an amp and started strumming, I knew this was going to be fun.

[livingdmd]

Dysphoria and DMD

It took me a very long time to realize my own gender dysphoria. I think that a lot of this had to do with how Duchenne Muscular Dystrophy (DMD) affected my relationship with my own body. I often felt like my body didn’t feel quite right, but I attributed this to the effects of DMD and the corticosteroid treatment I was on to slow its progression. In this paradigm, weak muscles meant that I always felt a disconnect between how I wanted to move and how I could actually move. Slowed puberty meant that I would never understand what it meant to be truly “male”. Neurodivergent tendencies meant that I was incapable of understanding the world in the same way that my peers did. I felt that I had to accept that I would live in a world I didn’t understand with a body that I did not want.

In my pursuit of feeling normal, I thought that I was supposed to be a man and supposed to express myself in a certain way. As a result I tried hard to appear masculine, despite how unnatural it felt. I started to attempt to talk in a deeper voice, I kept my hair cut short so it wouldn’t become curly, and I generally tried to avoid doing what other people perceived as feminine. I felt that I had to fill a role that did not feel natural, and I did not understand how this came normally to others. I would often look to the internet for guides on how to act, dress, and communicate like a man. The idea of dating in particular felt especially strange to me for a number of reasons. In general, it felt almost like I had to learn the rules of how to perform the “male” role in a relationship. For the longest time, I believed that the reason I felt strange was because I never found male role models with muscular dystrophy and, as a result, never learned how to be a man. Later, I came to realize it could also be due to the fact that I felt extremely uncomfortable living in a male body and being perceived by both myself and others as male. Because of this I felt like I couldn’t express myself the way I wanted to.

[livingdmd]

The Pursuit of Normal

It is difficult to come to terms with a life altering diagnosis such as Duchenne Muscular Dystrophy (DMD), and individuals learn to cope with it in a variety of ways. For me, this appeared as a strong desire to be “normal” (Which admittedly, is an extremely vague term, even for those without DMD). This desire first showed up late in elementary school when I began to fall behind my peers in physical benchmarks and activities and started to realize that certain activities would be impossible for me in the future. I could not be a professional sports player, could not participate equally in school sports, and could not keep up with my classmates in P.E.. My response to this was to decide for myself that, if I could not get recognition for physical achievements, I would try my best to be the perfect student and excel in academics. I saw this as the path to becoming “normal”. If I was a good student, I could eventually get a normal career, a normal relationship, and a normal life. 

In some ways, one might consider the drive to excel academically to be a good thing. However, I ended up getting to a point where I always tried to do what I was “supposed” to do. I was supposed to achieve academic accolades, I was supposed to be a “man”, and I was supposed to accept my DMD diagnosis without complaint. Since these things were expected of me, failing to achieve them meant I had failed, and, if I did achieve them, I was only doing what was expected and did not deserve praise. As one could probably guess, this led to a strong sense of perfectionism that had severe consequences on my own self worth and self esteem. The image I projected to others was not reflective of my own wants, needs, and desires. It was a reflection of what I thought others wanted to see in me. Eventually, this image became too hard to maintain and I had a period of crisis. I felt like the person I wanted to be was too far separated from who I had to be for everyone else. Through navigating that time and identifying how I was not allowing my own sense of self to grow, I began to realize how to live a more authentic and fulfilling life. I came to understand that people respected me because of how I expressed myself and not because of how closely I matched their image of me.

[livingdmd]

Social Development

Growing up with Duchenne Muscular Dystrophy (DMD) significantly impacted my social development as a child. In some cases I was forced to come face to face with the stark reality of my disability and how it often led to situations where I could feel excluded. During high school, I was a member of the marching band. As a band member we would all travel to play at our football team's games. However, in many cases, the high school football stadiums were not entirely accessible. A stadium might have a handicap section, but it could be located away from the assigned place for visiting bands. We did the best we could to adapt to each new field, but oftentimes I would have to sit by myself away from the rest of my bandmates. Sometimes, even though we had requested a bus with a handicap lift for transportation, no such bus would arrive. At the time I was still capable of crawling, and in an effort to stay included, I would crawl up the steps into the bus and make my way to where the rest of the percussion section were seated, finally climbing into a seat alongside my bandmates.

I think, since I had a strong desire to be what I thought of as "normal", I was very averse to accepting any sort of help or even admitting that I might need assistance. Because of this, I told myself that this was just the way things were and that I would always face setbacks that would require me to sacrifice my own comfort to participate like everyone else. Over the years of doing this over and over again to prevent myself from facing my reality, I began to develop a habit of not wanting for things, for fear that I might be disappointed. This was something that stuck with me for years, and contributed towards a low sense of self worth. This is something I have since worked through, and I am in a much better place now, having learned not to sacrifice my own comfort and silence my own voice so that I feel like I can be accepted. In the long run, quieting your own voice is equivalent to denying yourself.

[livingdmd]

An Introduction

I am a 29 year old transgender person living with Duchenne Muscular Dystrophy (DMD). I have carefully managed my mental health through therapy and medication for many years as I have navigated depression and anxiety. Supposedly as a result of DMD, I also have some difficulties with sensory processing and have several additional neurodivergent tendencies (although I have never been formally diagnosed with anything more than depression and anxiety).

I have worked hard to get to where I am today. With a growing sense of self worth and confidence in myself and my own self expression; I have a clear set of goals that I feel give my life a sense of purpose. Fortunately, I find myself in a place where I can devote a great deal of time to work that I find immensely fulfilling. I hope that through sharing more of myself, my experiences, and my talents, I can help others navigate their own lives and achieve their own goals.