How I'm Content in a World of Daily Pain and Life-Limiting Symptoms

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I have this thing.

The doctors call it a disease. My family calls it a devastation. I call it a storm.

My life has never been a calm blue sea; it’s always been a storm.

Here’s the thing about storms — they’re haunting and wild and loud and dark and unpredictable, just like disease.

But I love them.

Maybe this has something to do with a childhood spent in tornado alley. Anytime I saw clouds, I ran straight to the window with the hope that when the skies would part, the air would be fresher, the sky would be bluer and the world would become still, if only for a moment.

Dark skies, wild winds, the unknown… it’s all so frightening and exciting. Most people are terrified of thunder and they despise the rain; I welcome both. To me, it’s a new beginning.

I guess that’s why the diagnosis has never really been hard to accept.

Autoimmune autonomic ganglionopathy (AAG) is a perpetual storm.

The clouds show up with little warning, and the flare ensues as a nightmare to all who view it from the outside. True, I’d die a million deaths for one day outside of the haze, but my secret is, I actually like this hurricane.

It’s hard to explain.

People ask how I can be content in a world of daily pain and life-limiting symptoms. They get overwhelmed when they see me drowning in my situation. But I’m not drowning. I’m exploring the ocean floor with clear goggles. Because like AAG, the ocean floor is uncharted and undiscovered territory.

It’s the easiest thing in the world to be happy under the rays of sunshine.  You’ll get wet, you”ll get muddy, but as they say, life is not about waiting for the storm to pass.

It always seems to me that when it rains, it pours. But it’s taught me how to swim.

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Hey, Autoimmune Disease, Still Think I'm an Easy Target?

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Dear Autoimmune Autonomic Ganglionopathy (AAG),

I’d like to know what you were thinking when you chose me. Did you look at my small 15-year-old frame and decide I’d be an easy opponent? Did you think you would breeze through this war and come out the victor?

I’m sure you did.

Five years later, are you still feeling confident?

Because I am.

You completely underestimated the fight in me.

You’ve stolen my ability to eat, drink, go to the bathroom, see completely, move freely, work, get an education and even sleep, but you haven’t stolen my ability to fight. You haven’t broken my spirit.

AAG, you’re gonna have to try a lot harder if you want to beat me.

You’ve taken so much away from me, but you unknowingly gave me so much more. My fight, resilience, bravery, happiness and courage is more bountiful than those who are twice my age. AAG, you’re a monster, you don’t fight fair, but I’m giving you the option to bow out now. Consider it carefully because you’re not going to beat me. I’m way too tough for you.

aag

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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You Took My Son's Last Breath, Chronic Lung Disease, But You Didn't Win

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Dear Chronic Lung Disease,

Screen Shot 2015-03-19 at 11.28.50 AM When I first met you, you terrified me.

I’d already met your friend, heart disease, the day I met my tiny newborn son.

The word “disease” is scary enough, but throw “heart” in front of it, and then “lung”… Well, you two were a terrifying pair.

I watched you play your games in my son’s body. I saw the mean tricks you played on him and the way you messed with this momma’s head and heart.

I saw you tighten your grip on his tiny lungs more times that I can count. You made him turn blue and gasp for life and breath.

You changed my life and made me fight harder than I’ve ever fought in my life.

You forced me to make decisions no mother wants to make.

We one-upped you, and our son received a tracheostomy.

Breathing became a little easier, but you still had more up your sleeve.

You caused his weak little lungs to become extra susceptible to illness and infection.

We faced setback after setback, but we fought you tooth and nail.

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I learned how to force oxygen into my son’s tiny body when he turned blue. I learned how to operate medical equipment that shouldn’t be part of any child’s nursery.

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But guess what? You’re not the winner here!

My son fought and lived and loved his life.

He taught us all so much about love, joy and hope.

He proved that miracles happen. Yeah, remember that one time you just made him quit breathing all together? That one time the doctors told us to prepare for the worst?

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Well, it seems you’re not stronger than a miracle.

You’re not stronger than faith and hope and love.

But I learned a lot from you, chronic lung disease.

I learned that every life is worth fighting for.

I learned that I can do hard things.

And most of all, I learned that you did not define my child.

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Dear Chronic Lung Disease,

I’d like you to meet my son. He’s not defined by his organs.

This is Matthias Samuel Loux.

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In the end, one day, his heart would stop because of the fast one you pulled on his lungs on August 21, 2014.

But he lived for almost four years in spite of you, and he lives on because life is stronger than death.

This is Matthias Samuel Loux. Lover of music and books and Mickey Mouse. Champion of laughter and big smiles. Known to turn heads and turn a dark day into light for those who were downcast.

This is my son, Matthias Samuel Loux, my brave, beautiful, handsome son with deep brown eyes and a head full of soft, delicious curls. He had a crooked finger and lots of scars. He couldn’t talk yet, but he spoke loud and clear to anyone who glanced his way.

So you may think you’re powerful, chronic lung disease, but this boy overpowered you every day of his life.

You may think you have control of breath and life, but this boy taught us all how to breathe.

He was my daily reminder to breathe in life and soak up every moment with a grateful, joyful heart.

You may have taken my son’s last breath.

But you didn’t win.

Love won.

And love taught us all how to breathe.

This post originally appeared on From the Heart.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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The Absolute Hardest Part of My Daughter's Complex Medical Journey

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To my daughter’s complex medical issues,

We don’t know yet if you have a formal name, like “syndrome,” “disease” or “disorder,” or if you’re just a random group of health issues, but I’ll be honest. I wouldn’t really feel the need to call you be your formal name if I knew it because we’re pretty close. Too close, as far as I’m concerned, but close, nonetheless, and so I can drop the formality and simply call you “complex medical issues.”

There’s so much I want to say to you, like how perplexing you’ve been to both my husband and me and even the team of specialty doctors; how frustrating it’s been to have to research you day in and day out over the past seven months so I’d know best how to advocate for our daughter’s care; how hard it’s been for me as a mother to see my baby struggle at first to breathe, to eat, to grow, to reach milestones because of you; to recognize that I can’t fix you.  

Ugh. I. Can’t. Fix. You.  

That’s been the absolute hardest thing for me on this whole journey. As you know, my close friend, I’m a fixer by nature. That’s what I do. Someone needs something, I can get that for them. There’s a problem to be solved, I can help solve it. There’s a situation that needs to be researched, I’ll get to the bottom of it. In the past, if I worked hard enough, searched long enough, I could fix darn near anything. And then in August of 2014, you came along with the birth of our second daughter.

Don’t let this go to your head or anything, but I was scared of you for a long time. From the moment I knew I was pregnant with all three of my children, one of whom I lost in a miscarriage, I deeply feared your presence in their lives. Ultrasounds were met with both excitement and trepidation as I awaited the news that my children were healthy. 

When your presence at Ava’s birth caused her to be whisked off to the NICU, my fear over you was again palpable. You’d somehow taken the life of my son, and now here you were, trying to take my daughter from me. Doctors assured us you were just a mild airway issue, and we soon had our daughter home safe and sound. But as the days and months passed by and you continued to rear your ugly head, my fear turned into dread. Doctor visits turned into tests, hospital stays and surgeries.  

I was afraid. Of you. Of what you were doing to her. Of what you might continue to do to her throughout her life. Of the fact that I can’t control you.   

And then something amazing happened. As Ava has fought back against you and recovered from surgeries and complications, as she’s gained weight and grown in strength, as she’s met her milestones and even blown past a couple, she showed me I have nothing to be afraid of. Figure that. A little 7-month-old baby teaching her old mother she has nothing to be afraid of! 

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You may remain nameless throughout Ava’s life, and we’re hopeful the worst of her days with you have passed, but we know you will still linger in her life, hopefully more in name than in deed. Yet, no matter what we face, I’m no longer afraid of you. I hope you heard that loud and clear.  

I AM NO LONGER AFRAID OF YOU!

Our tiny but mighty little girl has fought you tirelessly over the past seven months and look at her! Despite all you’ve tried to do, she’s survived and is now thriving. You don’t stand a chance against her or her doctors, who have implemented medications and surgeries. And no, I may not be able to fix you, but I’m happy to say that I’m able to research you, to get to know you inside and out and advocate for the tests, medications and even surgeries that have been needed to loosen your grip on our daughter’s life. And if you haven’t figured this out about me, not only am I a fixer by nature, but I’m also relentless, so you don’t stand a chance against me, either, or her father, sister and extended family who love her dearly and stand by her side.

So, complex medical issues, or whatever your name might be, please keep this letter as a reminder of your glory days because they’ve shown to be short-lived. Health, growth and development have replaced you, and hope has replaced my fear.

P.S. You’ve now made it my lifelong goal to help other families experience likewise in their lives and the lives of their children. So when we talk about fear, I hope that you recognize that the tables have now turned. Be afraid “complex medical issues,” be very afraid. As you know, I’m relentless.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Why I Feel Sorry for My Chronic Disease

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Dear Scleroderma,

I feel so sorry for you.

When you picked my life to destroy you probably thought, “This is an easy spot, I’ll bring this girl’s life to shambles. She will be overwrought with grief. She will give up quickly, losing all of her beliefs.”

Slowly but surely you took everything from me. I become a husk of my former self. You made me an absentee.

You stole my college scholarship, you seized my independence, you ensnared my body and life, and you abducted my ability to be an energetic, helpful wife. You petrified my family and drove many to insanity.

You, sir, have absolutely no humanity.

You probably thought when becoming my unwelcome guest, “I will dismantle this girl’s ability to function, or feel the slightest bit blessed. She won’t even be able to eat! I’ll torture her so much, she will do nothing but hang her head at her feet!”

You probably believed I would give up without a fight, a broken vessel with no reason left to wrestle this shadow of a life haunting me every day. You probably thought, “Yes, how could she possibly be happy this way?”

Well, Scleroderma, I am here to tell you, my life is still all right. You picked the wrong woman, for this girl has great fight.

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She doesn’t give up easy just because life is no longer breezy. She will never hang her head in shame, she will stand tall and proclaim, “I am a scleroderma warrior, I don’t have myself to blame.”

You may have stolen my body, my experiences, my youth, but I am here to tell you I know the truth.

Happiness is a choice, it is my decision, and you cannot take that from me, for I always keep a back up provision.

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So, Scleroderma, give me all you’ve got.

Let’s see how I can make you feel distraught.

Even though I often feel lost in the abyss of the shattered world I dearly miss, you won’t stand a chance, as I will always be prepared for your next enemy advance.

I know in the end you will eventually take me, but just know this: you, Scleroderma, will never, ever break me.

Chanel T. White

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Why I No Longer Keep My Disease a Secret

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Dear Hyper IgE Syndrome,

I remember when we first met. I was a preteen. I didn’t understand what role you were going to play in my life and my future. Were you always going to be around or would you leave me one day? I didn’t know how to handle you sometimes. You’d show up in completely unexpected, different ways and often threw me for a loop. You’d appear out of nowhere. It was inconsistent and frustrating. It’s crazy to think that when you showed up is when I felt the most alone.

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I tried my best to accept that you were just going to be a part of my life, but I wasn’t ready to tell my friends or anyone about you. I was insecure and ashamed. You definitely made going away to college pretty hard for me, and I did all I could to keep you a secret. I didn’t want anyone to know about us and the affect you had on me — I just wanted it to remain low key. I wanted to enjoy my college years and not feel tied down to you.

I wanted to be normal and fit in, but you refused to let me go. You’d show up and make me change what I’d wear every day. I’d have to cover myself up. I was thankful when it rained in the summer so I didn’t have to be seen with you in a bikini on the beach.

Things were a little rocky towards the end of 2011 and beginning of 2012, and I wasn’t sure what was going on. That February, you came over and swept me off my feet. I’d never felt the way you made me feel that day, and it’s something I’ll never forget. It was so out of the ordinary and made me so unclear of where my future was going. I was pretty terrified.

You were giving me all of these signs, and finally I decided to listen. I knew I needed to embrace you, but it was easier said than done. I’d kept you as a secret for as long as I’d known you, but when you came in so abruptly that day in February, I knew my life would forever be changed. I started telling my close friends about you, I started writing about you and realized a huge weight was lifted off me. I never intended to lie or fib; I just thought life would be better off if you and I remained a secret. I didn’t realize that by sharing you with the people I love, as well as with strangers, that I could inspire and motivate other people to share their stories about a relationship like ours.

I used to hate you. I did. It took a while for me to realize that you only came at me to help me. You helped me evaluate my life and realize taking care of myself needed to be a priority. You wanted me to be fully authentic and somehow you knew that was going to be the turning point. You were right. You knew I would start taking care of myself if the world knew about you. No more hiding. We were a team, and we were going to get through life together. Do I sometimes wish you were with someone other than me? Of course, but most of the time you keep your cool, and for that I’m grateful. I know others in relationships like ours, and they’re struggling to get by in life.

I’m grateful for you for coming into my life and showing me what it’s like to be a confident person. I also learned (and this certainly came with age) that I’d rather stand out than fit in. Normal is boring, and I certainly didn’t want to be boring.

I just ask that you don’t come back and sweep me off my feet like you did a few years ago. You made life really hard for me and made me question everything. I’ve learned a lot about myself since you came into my life 19 years ago. No need to keep reminding me that you exist; I’ve figured out how to make our relationship work and would like to keep it that way.

With love and hope,

Harper

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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