The Heroes

Dear Heroes,

Yes you. 
Dear Mastocytosis Sufferers, MCAD Sufferers, Mast Cell Dysfunction Sufferers, CRPS Sufferers, Chronic Illness Sufferers,
You are HEROES.

A hero is someone who overcomes something, or goes through a trial or tribulation and comes out on top, or maybe they don’t but they grow and develop.  A hero is someone who does something selfless for someone else, stands up against something wrong, saves the day. A hero is someone who is idealized or admired for their courage, bravery, outstanding achievements, or noble qualities That’s you.

Every day you stand up and fight the most difficult thing out there, your own body.  You fight something you cannot see, cannot destroy or punch or remove, and really can’t “defeat”.  You stand up against doctors, professionals, judges, EMTs, nurses, even your own families. You fight for what is right for you.  You fight to be heard and seen for what you need. You are a researcher, a healer of yourself. You dig deep into what could help you or others like you.  You share your findings in hopes that even if it doesn’t help you, maybe it will help someone else. You advocate for yourself and those who cannot. You are a defender. You fight back against those who say “you’re crazy, wrong, not sick, it’s all in your head”. You defend yourself, your friends or fellow compatriots in this battle. You are an educator.  You teach everywhere you go. You inform medical professionals, you educate strangers in compassion, and you even teach those around you what STRENGTH is. You overcome, you fight back, you never give up. You are a hero. 

No matter how many times you get knocked down, you get back up. You have been knocked down by someone saying, “you don’t look sick” or “are you sure there’s something ACTUALLY wrong?”.  You’ve heard a thousand times, “is that even a real illness?” and “you can’t be allergic to EVERYTHING”. Someone always says, “just try X Y Z because this is the cure all and if you don’t do it then you aren’t even trying to help yourself and clearly you don’t care about MY opinion”. You’ve stood up to doctors dismissing you, ignoring your concerns, and giving up.  You’ve probably heard a thousand times to go see a psychiatrist, a psychologist, some kind of psycho therapy to “cure you”. And maybe you have gone to see them, explained all that’s happening, shown them your struggle. Maybe they listened and wanted to help you sort through the other problems, maybe they couldn’t help, maybe they even said “go see a medical doctor” to which you replied “I did, they sent me here”. Maybe they didn’t understand, but YOU tried.  You’ve had friends walk away, turn their backs, and give up because it was just “too hard” to be around someone dealing with something that rips away their lives. You’ve watched yourself be left out, whether necessity or just being forgotten. You’ve witnessed it all.  

You’ve handled loss.  The loss of yourself, your daily normal, your life, livelihood, and even your family.  You’ve lost your freedom, your capabilities, your self worth, everything. You’ve given up.  But you didn’t quit. You’ve never quit. Because you can’t quit. Not on yourself, not on those around you.  Even if someone and everyone else has, YOU haven’t. You’ve been put down, vilified, harassed, ignored, and ignorance has caused it all.  Not you. You’ve never caused this. You didn’t choose this. It just happened. You are the strongest person out there.  

You have had to fight every day for your breath.  You’ve had to change everything about your life, eating, food, clothes, travel, even breathing.  You’ve had to research and try and test out what could help. You’ve been scared, terrified of change and new things, because who knows what could happen, but you are stronger than that.  You’ve done it anyway. You did more than just give up gluten for 30 days or avoid chocolate for Lent, you gave up your normal life to save yourself with no clear end in sight. But that hasn’t stopped you.

  You’ve had to learn how to care for yourself in a way no one should have to.  Your caregiver has done the same. You’ve had to watch someone give up so much to be there for you, and it hurts inside.  Asking for help is the hardest to learn. Caregivers, you are heroes. You’ve taken a step back, a step away from yourself and given your all to another.  You’ve given up a part of yourself to become a part of someone else. Your love, your strength, your drive is our drive now. You push us, you remind us, you are there, and that’s more than we can ask for.

To the parents who watch their child go through this, you are a hero.  You’ve fought for them every moment. They are always on your mind. You’ve learned to show caution but not fear in front of them.  You’ve learned how to push and when not to. You’ve fought countless people that you know you’re right because you know your child and NO this isn’t made up.  You’ve dealt with criticism, frustration, sleepless nights, anxiety, anguish, and tears. You’ve learned to experience joy in the smallest things. You’ve knocked down every boulder in your path and fought and will fight for your family and your child.  You’ve shown your child how to be a strong human. You’ve taught them compassion and that love knows no bounds. You are a hero.

To those of us who were born with this, grew up with this, lived with this, you are a hero.  You may have known no different, but you’ve overcome. Your life has never been easy but you don’t see it that way.  This is your life, and you are going to live it. You’ve got more life experience than most people twice your age, more maturity than most adults, and an internal strength that knows no bounds.  You are an educator and a leader to your friends and everyone around you. You defy odds every day and never let it get you down. Because you can’t. Because if you give up, throw in the towel and quit, you’ve made a choice for everyone else around you, supporting you, and that’s not who you are.  You are strong, stronger than you know. You are a hero.

To those of us who lived our lives first then had it ripped away, you are a hero. You knew a normal.  You knew a daily life that was good and happy and way less complicated. Maybe it wasn’t always good, but looking back it was sure better than this.  You’ve had to change everything about yourself and your life. You’ve dealt with more loss than anyone. You’ve lost yourself.  The you BEFORE. Then there is the you now. Your maturity and coping skills have been tested time and time again. You’ve had to learn to ask for help again.  You’ve had to give up freedoms, normalities, work, school, even family. You’ve lost so much time and time again, yet you’ve never quit. Because you remember a time before it was here, and that’s where you’re going back to.  You may have the greatest determination of us all because you WANT that “the you before” back. You’ve had to upend everything and flip your world on its head. You’ve had to adapt and struggle with your own family, children, grandchildren, friends, coworkers, everyone around you.  You’ve had to educate, teach, push, prod, struggle, and crawl your way through just keep going. You battle daily to feel like yourself again. You battle people who see a change and don’t understand why you seem so different. You battle yourself over your wants and desires versus your needs.  You understand loss, love, and strength. You are a hero.

Your story is every literary teachers dream.  A true struggle and a growth by the main character, except there is no dramatic fight against the bad guys, no kidnapped person to save, no burning building or great mystery uncovered.  Firefighters are heroes, but only when they save the day does anyone really notice and recognize them. So here is your recognition. You are WARRIORS not victims.

To all the fighters, survivors, caregivers, and those who never give up, you are a hero.