dys is real, dys is me.
grieving who i once was, embracing who i am now
This is me as a young swimmer, at my first competition in the club swimming world. Bright-eyed and excited to compete.
This is me, 18 years later, hoping to fulfill my dreams to qualify for the United States Olympic Swimming Team in a few short months, more unhealthy than I have been in my entire life.
“How did I get here?” The question that every person that is fighting a health battle asks themselves. Some people are lucky to know the answer, and wish they had done something different. Me and many others, have no idea, and wish they had something tangible to explain why they are going through this.
There could be a hundred different explanations for how I developed this illness. One plausible explanation was a COVID infection that triggered my illness. This occured before we had testing and more knowledge on the subject. But, I won’t inundate you with all possible options. But, living without an explanation is a challenge itself.
The picture of me as a little girl was my very first club swim meet. I had never swam the 100 IM before and was in the very first (and slowest) heat of the event. I finished so far ahead of my competitors that I got out of the pool, not knowing I was supposed to wait until the others finished. Once the race was over, the announcer proceeded to call the name of the second place finisher as the winner, not realizing I had finished and left. My mom recalls me frustrated that they didn’t acknowledge me as the heat winner. Needless to say, my competitiveness revealed itself early.
I transferred my competitive spirit into hard work every day. I did not view it as hard work, because all I was focused on was beating the person next to me. I was focused on the task at hand, which was not losing. I believe this prevented me from burning out earlier than I did. I did not set out with huge, lofty goals as a seven year old. I was just excited to go to practice every day, liked the routine, and was able to do well in competition.
I eventually reached the level of breaking dozens of national age group records, positioning myself amongst the greats like Michael Phelps, who also showed talent at a very young age. But I didn’t train with these goals in mind. I just showed up and raced.
People sometimes asked what made me so successful at a young age and I think it was pretty simple: I accidentally worked hard every day, simply trying to avoid other people beating me.
I remember hearing this quote at just 12 years old: “To be the most successful, you have to hate to lose more than you love to win.”
This resonated and stuck with me.
While my motivation to avoid failure or disappointment led me to great success, it also bred the perfectionism in my personality.
I used to be hard on myself when I was “healthy” and could accomplish any number of tasks in a single day. So, it was hard to not continue that habit when I became sick and my capacity was significantly decreased.
It was incredibly challenging to want to be as productive as I once was, but not have the energy to. Waking up at 5 am, swimming for two hours, sitting all day in class, lifting weights, swimming again, working on homework, seeing friends for dinner, watching television, doing more homework, getting to bed at midnight and doing it all over again? Not an option anymore.
My mother recalls me as a child, and said I had to be constantly entertained. I never napped, and I had to be “on the move” at all times. If we went on a walk, she would have to spin my stroller in circles in order to make me feel like I was going somewhere. This carried throughout my childhood and into my adult life. Even if I was on “vacation,” which did not come around often with my swim schedule, I would be up early, asking what the plan was and when we would get started with our day. My sister, on the other hand, enjoyed and required her sleep, and did not appreciate being disturbed. She’d always tell me to “chill out” and remind me that we were not “in a rush". But, I have always felt that time should not be wasted. So, I constantly filled my plate to the brim, and every once in a while, I would experience a spill over.
It often took something significant for me to slow down. Every year, like clockwork, I would come home from college for winter break, and usually spent the first few days sick in bed. It was like my body purposefully came down with an illness to get me to pump the breaks and take a little bit of time to relax. Another significant speed bump occurred In 2018, after an incredibly successful NCAA championships, personally challenging year, and stressful academic load. I came down with mono in the summer right before Nationals that determined the team for the World Championships. I had no choice but to stay in bed, horizontal for a few weeks leading up to the meet. The rest ended up being a great thing for me- I went personal best times and qualified for Worlds.
I have always wanted to go, go, go and my health has been the only thing that has successfully slowed me over the years. Especially this time.
While I was always focused on what I could accomplish as an athlete, that work ethic that I had established just bled into every area of my life. I felt like I should excel at everything- sports, school, volunteering, social life. I somehow, for a long time, felt like I really could do it all.
It is hard to swallow the fact that I might want to do it all now, but have to make choices about what I am going to prioritize. And this is where grief comes in.
Some of the things that I have been forced to grieve/give up:
waking up early
gluten
alcohol (more than 1 or 2 servings)
swimming (just the movement makes my symptoms worse)
staying up late
my social battery capacity
intense exercise
Grief is unpredictable.
My life used to be so predictable, and because of this, when I got sick, even though I knew my daily routine would look drastically different, I craved routine and predictability.
Sometimes I could miraculously run a few miles. Other times, I couldn’t stand long enough to do the dishes.
The physical inconsistency, I think, is the hardest hurdle that I have had to overcome. I have trained my whole life as an elite athlete, and was used to pushing myself to my limits on an almost daily basis. And not all of that training has gone away. As a result, I sometimes am able to do something physically impressive “for someone that is sick.” Which, by the way, is not commentary that I approve of.
It is sometimes hard to have a taste of better health. I do something challenging, take pride in the progress I have made, but in the back of my head am waiting to experience a major crash in energy. And if I somehow manage to avoid a flare in symptoms, I know that it could be a very long time until I am able to do something like that again.
Even though I am still a master planner of my activities, what I have learned is that I must embrace the inconsistency. I will spend weeks thinking about what activities I can look forward to, how spread out they are, and when I am going to have to have intentional rest days. Meanwhile, always planning with an asterisk*
*if I am able to.
To try and reframe my perspective about what I am able to do, I have learned to speak positivity into the world when I am doing anything at all. When I have the chance to be out in nature, I comment at how nice it is to be outside, remembering the days that I spent inside, wishing I could be out adventuring. And when I am required to rest, I think of it like I am training myself to be prepared for the next time I can venture out to do something else.
As an elite athlete, I was forced to make sacrifices when it came to my social and family life, and so this was somewhat familiar to me. Instead of burning the candle at both ends and ending up having a major crash, I pace myself. I have learned to enjoy doing less.
“Less is more” when it comes to charging my battery.
To someone who has never experienced a chronic condition, this thought process may seem confusing. To those that are managing an illness like mine, probably know this cycle by heart.
Grief about losing my ability to compete is also unpredictable.
I was surprised that I could watch the Olympics and not feel very many emotions. Granted I didn’t have a lot of extra emotion to spare at the time.
I remember walking through in a Mexican restaurant as my teammate Katie Ledecky swam her 800m Freestyle in Tokyo. I casually walked up to the television, mounted above a family having dinner, and asked them if I could watch the race because my friend was swimming. The look on their face was comical. I think they were confused at how casually I responded “yes” that my friend was THE Katie Ledecky.
After watching her race, I thanked the family for letting me interrupt their dinner, and moved on, surprisingly unfazed. I look back and am still surprised that in that moment, I didn’t have feelings of jealousy, anger, or disappointment. Not directed at any particular person, but about the situation I was in. It was justified for me to feel that my situation was unfair. Unfair that I didn’t have a chance to show myself that I was capable of reaching my goals. Unfair that the timing of my health crisis came right when I needed my health the most.
I somehow didn’t think this way. And because of that, I was proud. I received a lot of pity from people. And maybe it wasn’t pity, but that is how I interpreted it. It almost felt like people wanted me to make the Olympics for their own pride. Not the people very close to me- they just wanted to see me be happy. But, there were a lot of complicated and confusing conversations that came when people learned of my situation. Just like I tried not to internalize the “your going to be an olympian one day” commentary I have received throughout my life, I have tried not to internalize the “I am so sorry for you” commentary that came recently.
MY IDENTITY
I think what helped that day that when I watched Katie swim in Tokyo, was that my boyfriend and I went down to the boardwalk to jog along the beach, and got margaritas on a weekday in the summer- something I honestly would have dreamed of doing when I was in the thick of training.
Something about being “normal” in a sense, and experiencing part of life that was new to me, I think helped me transition to the new part of my life. Even though I was experiencing a great loss (that was not by my own choosing), I was also gaining in a lot of ways.
I am a daughter, a sister, a partner, a friend, a woman, a scholar, an athlete, a patient, an advocate and more.
The only part of my identity that changed was that I was no longer a COMPETITIVE athlete. I added to my identities through this experience, so personally it was a net gain.
My grief comes in the smaller moments and sometimes in waves. When I finish up a small amount of work and don’t have the energy to cook or do anything more productive, it hits. This has put me over the edge before.
I “should” be able to just do more.
I “should” have made more progress.
I “should” not have to worry about this at my age.
These thoughts would sometimes come and go. But I quickly realized that speaking to myself this way is unhelpful, and honestly just rude.
I read an instagram post from a chronic illness account that read, “I feel guilty for the way that I am- which is completely out of my control”. This hit home.
If I were to have others say these things to me, I would be disheartened. So, I must do my best to change the way I communicate with myself in order to heal.
Many others experience ableism on a daily basis, which is something I have only dealt with recently. But I cannot be participating in that discourse. I have learned so much about how to be a better advocate, how to not engage in ableist discourse myself, and how to better position myself as an ally to those living with disability. It is now personally important as I live with an invisible disability myself.
I want to be clear that while my health condition has greatly affected the life I once knew, I have healed enough to be capable of doing a majority of what I would like to do every day. Some days are better than others, but I have learned to pace myself. I don’t make any promises that I will not face setbacks in my grieving process. I am sure it will be continuous. But, I am doing my best, and that is all I can expect from myself.
Because I have been given this incredible gift of partial recovery, I want to use the energy I have been given for the betterment of those who have not reached this point.
I feel a sense of responsibility. Not one that is burdensome, but one that arises out of passion, driven by personal experience. That is why I decided that I am going to pursue a career as a medical doctor. You can read about my journey of Self Dyscovery :) and my choice to apply to medical school soon in an upcoming post.
The title of this post, “Dys is real, dys is me” came very easily to me.
Dysautonomia is Real and Dysautonomia is now a major part of me.
The backstory is a little cheesy. The Disney movie “Camp Rock” that was released in 2008 when I was merely 11 years old finishes with Demi Lovato performing the song “This is Me”- in front of a crowd for the very first time. I have always been a shameless fan of the inspiring songs written by Disney like Miley Cyrus’ “The Climb” and Frozen’s “Let it Go.”
But as I am embracing my new path, am excited about where I am headed, and cannot help but tell others, the chorus lyrics closely describe my feelings/experience:
… This is real, this is me
I'm exactly where I'm supposed to be, now
Gonna let the light shine on me
… Now I've found who I am
There's no way to hold it in
No more hiding who I want to be
This is me.
Stay tuned for:
Self Dyscovery: My Journey to Medicine
The Facts: what I wish that people knew
Setting Boundaries: how I kicked my guilt to the curb.
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