May Enos

@kristina-enos | contributor
May Enos is a young adult who lives with multiple chronic illnesses including Ehlers-Danlos Syndrome, Gastroparesis, and Autoimmune Disease. She is extremely grateful for every day she is blessed with and her favorite saying is “Come what may and love it.” May is also an advocate for chronic and mental illnesses.
Community Voices

Healing

<p>Healing</p>
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Community Voices

Could someone talk to me about gj tubes please? My doctor "assumed", his words, that I knew and understood what it meant to have a tube. I do not.

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May Enos

Medical Trauma Made Me Feel 'Unwanted'

I am not entirely certain that I want to keep sharing my story, but something tells me it still deserves to be heard. So, here I am, sitting in my room at 11 p.m. The house is completely quiet, yet my mind is still running. I think it’s time I start writing again because no one gets to take my voice or tell my story. The truth is, though, I don’t really know where to begin, only that it’s hard to enjoy surviving when you feel like neither heaven nor Earth want you. In February 2018, my stoma got infected, but doctors could not agree on whether it was infected so the next thing I know, a month has gone by and I am being admitted to the hospital with sepsis. Trust me, it gets better. A nurse had to advocate for me and push to have me admitted to the hospital because an ER doctor had already sent me home once before. Then, the first night on IV antibiotics in the hospital, my throat started to close on me. Atypical anaphylaxis . However, due to the atypical nature of my allergic reactions, doctors did not believe me or listen to me. They ended up refusing me any kind of treatment and blamed it on me, stating “patient is resisting treatment” to label me a psych patient. My infectious disease doctor even took Mom aside and tried getting her to admit to the psych ward against my will, so that they could force the very treatment on me that was sending me into anaphylaxis. I still do not understand why I did not die because there has not been a single day in the last two years that my surviving has felt like a good thing. At first, I tried to think about it as a blessing, but the flashbacks would not let up. Reliving the worst, scariest, most painful moments of my life repeatedly for months at a time hurt. The medical trauma would not let up. “You shouldn’t have survived childhood.” “You shouldn’t be alive today.” “You should just give up.” “I can’t help you.” The words echoed from various doctors’ mouths and left me with the resounding thought of: “You’re too far gone and not worth fighting for.” The comments didn’t stop there; in fact, they continued. Doctors throwing their hands up in surrender: “You’re wasting my time.” “You should just stop fighting.” And, “It’s all in your head.” More echoed comments from doctors’ mouths, as they played hot potato with my care or shut me down altogether. The reality is, I know I’m worth fighting for, but I certainly don’t feel like I am. In the same way, I don’t think Earth even wants me here anymore, though I know that’s not true. There may only be a handful of people who would miss me if I were gone but there are still people who would miss me, so this statement cannot be true. The problem is: because I didn’t die when they said I should have, I started to think that heaven doesn’t want me either and that I’m invisible and can’t die, which leads to thoughts of self-harm, among other things. I know these statements are not true, but they are what I think about. These last two years have been a nightmare. One guy told me I was the one for him. He told me he wanted to spend his life with me, but it seems he couldn’t handle me. One month is all it took for him to find someone else. There was no fighting for me, yet I was supposedly the one he wanted to spend his life with. My mind goes a million miles a minute. Pain, anger, frustration, feelings of worthlessness. I wonder if he even knows how much he hurt me, but the truth is, that is only the tip of the iceberg for me. The truth is, after he hurt me, I got sepsis, underwent emergency gallbladder surgery, went into anaphylaxis , my blood sugars dropped dangerously low, I experienced surgical complications and underwent a second surgical procedure, my liver and digestive tract put up one heck of a fight, and I developed an enlarged aorta… but of all things, I did not die. And I think nothing could have prepared me for this anger, frustration, jealousy, guilt, shame, survivor’s guilt, separation anxiety and subsequent post-traumatic stress disorder (PTSD), but here I am, fighting. No — surviving. And I will continue to fight for every ounce of space I take up on this planet because for some reason I’ve still got a lot of fight left in me and I know that my faith will sustain me. More than this, I know that my life has a purpose and that I am not a waste of space. How do I know this? Because even as I edit this piece three months later, I am filled with hope and starting to feel more like myself every day. Of all the things I have learned from this trauma , the most important thing to remember is that it is OK to feel whatever way I feel. If I am easily angered or extremely irritable one day, it is OK, and this will pass. This is the reality of trauma and it will take time to fully heal. That is OK. Most of all, I do not need to apologize for surviving. My survival is nothing to be ashamed of or feel guilty about because I am exactly where I am needed right now. If you are feeling this way at all, if you are recovering from trauma in your life, know that you are not alone. You do not need to have it all together right now and it is perfectly fine to feel whatever you are feeling. Jealousy, guilt or survivor’s guilt (to name a few feelings) do not make you a bad person. We are survivors through and through. I cannot think of anything more beautiful than the soul of a fellow survivor gaining their beautiful wings and learning to fly again. We have got this.

Community Voices

My Letter To Mental Illness

Dear Mental Illness

You are a thief. You are a thief of hearts, a thief of

happiness, and a thief of joy. You are a thief of love, a thief of excitement,

a thief of confidence, and a thief of self-esteem.

You take all of my confidence, joy, happiness, peace, love,

and self-esteem and you bury them in your own little treasure chest and hide

it. Well, guess what? I found the key, and the map. Catch me if you can! I just

found your chest, unburied it, and took back what you stole. Have fun chasing

me now!

It’s like you just don’t want me to be happy, but I am now.

You might whisper into my ear, “You’re not beautiful enough.” “You’re not

skinny enough.” You’re not smart enough” “You’re not worthy enough.” And most

of all “You’re crazy.” But you know what? I’m done with that. I have taken that

tape out of the recorder and I am burying it in the file cabinet known as the

“Bottomless Pit”.

How do you like that? I’m confident now, that I am worthy of

love, I am not crazy, I am just the right size, and I am smart enough for

whatever life may throw my way. After all, who is it that walks through the

battlefield of lies? Who is it that chased the evil scientist into a corner or

chased the monster, paranoia into the tower? That’s right, ME! I have cleaned

up your mess several times and I’m not afraid to do it again! You just keep

telling everyone that I am weak but we both know the truth, I am strong.

I’m not strong enough to bench press a thousand or even 100

pounds let alone fifty pounds. I’m not strong enough to keep from breaking down

but I’m strong enough to piece my life and I back together again piece by

piece, little by little. I have proven that a hundred times over.

I face trauma, and illness so big it almost seems impossible

to bear, but I always come out on top because I NEVER give up, despite what you

throw at me! So, I say bring it on! Catch me if you can, you little thief. I

don’t know why you bother though, because small talk aside, I will catch you

every time. I guess we are just stuck in a continuous game of “Tag, You’re

it!”…

Sincerely, one of your many rivals

Community Voices

Tis the season for joy and giving and #WarmWishes

Tis the season for joy and giving and #WarmWishes
So, from one mighty warrior to another
I’m cheering for you.
I may not be there in person
But I’m keeping you in my heart
Today and every day.

My wish for you this season
Is for you to know how special you are
That you can light the world with your smile
And that your radiant spirit changes everything.
This world would not be the same without you
So again, from one mighty warrior to another
Keep fighting
Keep shining your beautiful light
And let’s welcome in this new year together!

Love, May Enos
#StJude
#McLean

Community Voices

Born To Be #MightyPoets

The media says I need to be thin
I need to be beautiful
Anything but who I really am
As if perfection is the target I need to reach, or fail
But I’ll tell you something else about the girl that I am

I wasn’t born to be perfect I was born to stand out
In standing out this beautiful soul was created to be victorious,
Courageous, to rise above the darkness that tries to drag her down
I was born to be a fighter, survivor, warrior in this world

Perfection is not my name or the thing I was called to be
But I was born broken for learning and growth
So I’ll stand here and marvel at the beauty of the stars,
And the love of God, who created me to be perfectly me- unique

Born to be victorious
Born to be strong
Born to be a Princess- strong in God’s Kingdom
Born to be a daughter, a sister, a friend
Born to be a mother, courageous and strong
Born to be me. Exactly who I am.
No one else, nothing less
Because, Victorious is me

#Iambeyondworthy #iamenough

May Enos

What It's Like to Be a 'Medical Trailblazer'

As a senior in high school, one of the speakers for my class talked about how we are all trailblazers, going where no one has gone before — paving the way for others who come after us. I thought it was an interesting perspective to hold and I really enjoyed it. Little did I know the type of trailblazer I would become, and the struggles that would come my way with being one. For starters, I’m not out in the world opening doors for myself or others in the job field. I’m not even a college graduate yet. What I am is a “zebra.” “Medical trailblazers,” a term my sister uses to describe me, are those of us with rare genetic conditions who often have no family history of the condition (after all, someone must be first, right?). Often, our friends and family don’t know what to do or how to help us because it’s a mystery to them. On the other hand, we also have the unfortunate reality of being faced with doctors who have never heard of our condition, let alone know how to help us. I think one of the hardest challenges is while some doctors may have heard of it, they wouldn’t think to test for it because there is no family history of the condition. When combined, this is the stuff that makes our journeys to answers and health more challenging. I am the medical trailblazer for our family. At 19 years old, I was the first, and so far only member of my family to be diagnosed with hypermobile Ehlers-Danlos syndrome (EDS). The doctor who diagnosed me spent years studying the condition, and highly suspected I had the vascular type. He stressed the importance of regular cardiac evaluations and all the ways EDS could affect my heart and vascular system. I have since been diagnosed with three leaking heart valves, a hole in my heart (some reports even mention an aortic aneurysm) and a newly developed heart block. The blood flow to my heart is “off,” which often results in hypoxia and can lead to an increased risk of a stroke. As the years have gone by, my case has become more and more complex, which now includes mysterious neurological issues. Doctors have run so many tests checking for all the common things, and have done this more times than I can count, but nothing is adding up. I’m fighting now for genetic testing for myself and I hope to find some answers for whatever is going on with me, whatever is battling to take my life. As a medical trailblazer, there are certain things that are particularly challenging, especially as a young adult. I largely must advocate for myself, because if I don’t speak up for my care, who will? Unfortunately, my neurological issues are impacting my ability to speak. I can’t turn to a family member for advice on how to cope with these issues, or even for advice or understanding from someone who has been there. I can’t turn to a family member or even a friend and say, “Hey, I’m struggling with this. I was wondering if you had this symptom, and if so, what did you do that helped?” On the other hand, there is no going to my doctors for help because they largely do not know what is going on with me or what’s wrong, let alone how to “fix” me. With rare genetic conditions that have no place in my family’s medical history so far, I am left to fight and fight, and keep on fighting. With rare conditions, it’s possible that doctors have not heard of some of them, and therefore would never know to look for them, let alone know what tests to run. Other times, they have heard of the condition, but only briefly and still would not know to look for it as it’s nowhere to be seen in the patient’s family medical history. This leaves us medical trailblazers with the difficult task of advocating for things we don’t even know exist. It will take many of us years to find an accurate diagnosis as well as the proper care, because doctors are trained to focus on the common problems, not the rare. Even though we are not “common,” please don’t give up. This world needs each one of us with all of our unique characteristics and symptoms, with all of our unique personalities. We are medical trailblazers. Because we are walking where no one else has, we cannot turn to those we love for hope that things will get better or that we will one day thrive. We must look inside ourselves — inch by painful inch — for the strength we don’t always feel exists. We must remember we are strong, resilient warriors. We will not be beat.

May Enos

Holding Onto Dreams With a Chronic Illness

As children we are often prompted to think about what we want to be when we grow up and encouraged to dream big and reach for the stars. For most of us, I’d say it’s probably not even close to being in our minds that we might not be able to grow up. Some live with disability from the beginning, with anything from mobility to speech to vision or hearing. But what happens when disability develops as a teenager or young adult? I am learning all about this world when dreaming big and reaching for the stars becomes fighting for life, not as a cancer patient but as a medically complicated patient with over two dozen diagnoses. I am learning that I am not alone. If you are one of the medically complicated patients in this world, and you are reading this, remember: You deserve to dream big and reach for the stars, but more than anything you need to know you are still worthy of love. Don’t let anyone convince you to second-guess your dreams or change them because they are too big or not “big enough.” I believe dreaming big is what keeps us fighting. When I was growing up and asked what I wanted to be when I grew up I would often say with pride, “I want to be a mother.” I wanted to grow up, get married and have children. To be a mother. That was all I dreamed about as a little girl. When I played house with my brothers, sisters and dad I was always the mother. Dad played the baby. Somewhere along the way the world tried convincing me I had to choose something else as a career. After all, I could be anything in the world, why would I want to settle down and have children? To this day that dream has not left me. In fact, that dream has saved my life. It is what I fight for every day. Whether I’ll be able to have children biologically is beyond me. Whether I’ll feel safe or confident in that is beyond me. What I do know is there are many children in this world who need the love I have and the love I can offer when I am ready. Five years ago, I almost ended my life and it was this dream that kept me holding on. It has been this dream that keeps me going, that I keep fighting for. Find that dream. The dream you can’t let go of. The dream that if taken away, makes life seem pointless and don’t ever let go of it! Even if you have to make some changes to the dream. Maybe you can no longer walk, or your vision or hearing are impaired. In this case and any case really, let that dream be your guide. Your star. The magnet that keeps you grounded. Don’t give up. If anything, I believe that is the biggest thing I learned from my martial arts family. To find something I am so passionate about and never let it go. Life is filled with purpose and meaning when we can learn to fight for what we want in spite of the storms that come our way. Finally, just remember, no amount of disability can detract from your worth. You are worthy of all the love in the world. You deserve happiness. A wheelchair, hearing aids, blindness, being unable to speak, feeding tubes, central lines, none of it detracts from the worth of your soul. You are loved. You are needed. Your voice matters. Your dreams matter. You matter!

May Enos

When Others Expect Me to Always Be Strong in Life With Chronic Illness

“You’re my hero.” “You’re amazing.” “You’re so strong!” (These statements can also be replaced with words like courageous, or brave.) I hear these things a lot and I know these are all positive characteristics. These are character traits that bring meaning and purpose to my struggles. Though, sometimes I wish that I could just be me. When I’m this girl who is amazing, strong and someone’s hero, it can get lonely and suffocating. Sometimes I just need to be. I need to be the traumatized girl, the girl with a less than perfect or healthy body. Not to be depressing or depressed, but to be true to the part of me that feels broken and needs a good cry once in a while. To be honest I don’t know what I’m doing some days, I don’t know how I made it this far in life or what I’m doing with my life. Sometimes I merely just exist and long for a relationship so meaningful that I feel safe breaking down my defense and crying on someone’s shoulder. I don’t like crying in front of others. I’m walking on sunshine, and drowning at sea. I’m trying to live in the present while my thoughts and mind are caught between terrible flashbacks from trauma, and anxiety about my future from the medical standpoint. I’m not so fragile that I’ll break and be unable to mend, but I do break sometimes and I need someone to understand that. It’s always a joy to watch others reach their dreams, and get so much more out of life than they ever dreamed about. Sometimes I just need someone to let me be complete. I’m tired of being in pain and hiding it because people don’t want to see my pain, they want to see my smile. So to those listening. Please, let me be more than just your hero. Get rid of whatever expectations you may have of me being this amazing, strong woman because I also need to be broken. I want to feel safe expressing my pain and fears with those I love because life with chronic illness and trauma is not always filled with sunshine and roses. I may well be strong, but underneath it all I’m still human, I’m broken, but I’m not always going to be broken into a million tiny pieces, sometimes it will just be a small crack in my armor. Please let me be the girl who needs to cry but wants to laugh, the girl who uses sarcasm as a coping mechanism. Let me be happy and sad, anxious and depressed, broken and whole, let me be sarcastic and cheerful. I have survived all kinds of trauma from a car accident to abuse and assault (both physical and sexual). I live with a body riddled with chronic illness from a paralyzed stomach, to a hole in my heart, and even a brain that is literally too big and falling out! I might be superwoman, or the incredible hulk, but I’m also human. I’m going to break just like any other normal human being, and that should be OK. I shouldn’t need to be strong all the time to be amazing. Being the girl others see in me isn’t always easy, because I’m not superwoman, I’m a broken girl determined to succeed in this life. I hope that through time I can put the pieces of my puzzle together to see how beautiful it really is but I need to do it my way with the support of those who love and care about me. Don’t give up on me and please try and see the scared, broken woman sometimes because she needs love and acceptance just as the girl you see needs encouragement.