How I Persevered When Mental Illness Made Me Feel Unworthy of Love

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Dear mental illnesses,

You almost took my life. Several times. I wanted to leave this world because of you, Depression. You, Bipolar Disorder, caused my moods to shift so violently that I’d be happy and on top of the world in the morning and suicidal by night.

You made me feel like I couldn’t handle you. Your control made me to believe I was a piece of trash, unworthy of love and happiness. I believed you for a long time — too long.

Borderline Personality Disorder, you were such a horrible nemesis that, for so long, I didn’t even want to admit that I had you. I hated you and what you made me feel and do. You created so much anger in me. You made me feel worthless, fearful, hopeless, dangerous and suicidal. I was out of control and loud, and I didn’t want to listen to anyone or try to do well. I couldn’t.

Anxiety, you told me I would never be happy with another woman. You’d wake me up in a panic nearly every morning with thoughts of wanting to kill myself because of who I am. You screamed at me that God would never love me if I loved my soulmate. I couldn’t eat. I felt nauseous and sick because of you overwhelming my thoughts and body with your lies.

But when I met her, my whole life changed.

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She loves me like no one else ever has or ever could. Thanks to her love and the help of the people I let into my life, I am no longer just surviving — I am thriving.

You all still linger, and I will always have to keep you at bay and remember to take care of myself, but I am handling all of you far better than I ever thought possible. I’ve learned that love truly does conquer all. I’ve learned that you will not defeat me. You will no longer tell me I’m unworthy or hopeless.

I know now that I can have hope. I do have hope. I’m living well with all of you! I’m happy and healthy now, and I will do whatever I need to do to make sure you’re out of my life for good. I will win!

Sincerely not yours,

Megan

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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To the Disease That Tries to Rob My Son of a Happy Life

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Dear Pelizaesus-Merzbacher Disease,

You make my life hard, really hard, and that is an understatement. But the one who you really make suffer the most is my innocent son, Nathan. He deserves a full life experience, but no, PMD, you robbed him of that. I really do hate you, and all of the pain you have caused me, my son and the rest of my family. The struggle has been real.

You are a strong one, Pelizaeus-Merzbacher. You have prevented my son being independent. But for all of the expectations you destroyed and all the joy you ripped from our hearts, we are still happy. Nathan is still happy. I will not let you take that from us. I will not let you win. As strong as you think you are, my family is stronger.

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The love we have for our special son surpasses any boundaries you have set on him.

Nathan cannot support himself while sitting up, but we have a special chair for him. Nathan cannot eat full meals orally because he gets exhausted and starts to choke, but we have a feeding tube for him. Nathan can’t quite figure out the use of his hands, but we have occupational therapy to help him.

We have a solution to your every problem. So bring it on.

I do have one thing to thank you for, though; you have taught me many things about myself. You taught me patience I never knew I had, selflessness I never knew I had, and strength that creates hope.

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My son Nathan may never know how to tie his own shoes or learn his ABCs, but he will continue to feel. He will feel the chilly water of Lake Michigan when I dip him in. He will feel the fresh cut grass around him when I lay him down outside for a family picnic. He will feel the wind blow in his hair when we take him for bike rides. Most importantly, Pelizaeus-Merzbacher Disease, he will always feel loved. You will never rob him of that.

From,

Two very lucky people

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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A Letter to My Pregnant Self, Who Wished for ‘Happy and Healthy’ Babies

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Dear Pregnant Self,

First off, let’s get something straight: you have absolutely no idea what’s about to go down. You’re sitting there, ginger ale in one hand, “Baby Wise” in the other, attempting to wrap your mind AKA gain control over this whole child-rearing thing. Spoiler alert: just like every other season of your life, things won’t quite turn out the way you imagine. They’ll be better, but completely different than what you are picturing.

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If you have said it once, you have said it a thousand times:

“So do you think you are having boys or girls? Or one of each?”

“I don’t know” (insert surprised face, as if you have never thought about it). “But we don’t care, as long as they are happy and healthy.” (Smile, as if you had ever even thought about the possibility that either of those things would not be true.)

We have all said it. It slips off of our tongues as quickly as a “Good,” after a “How are you?” (Which, by the way, we always respond with good. Does the stranger passing on the street really have time to hear about all of our struggles or woes?)

“As long as they are happy and healthy.”

First off, let’s be real. That first part, the “we don’t care,” that’s a lie. You and Hugh have talked about it a lot and both of you would love a boy and a girl. You know, because every American family has a boy, a girl, and a white picket fence to boot. Secondly, what does “happy and healthy” even mean? You say it in such a robotic manner, but the truth is, what you mean by that is you want a “normal” baby, whatever normal means.

Kids are walking germ sponges. Everyone anticipates their little one to get sick a lot as a child, you know, to build their immune systems up (which by the way, this won’t apply to you either… but we will get there eventually). The saying is bizarre. It’s not like we want our children to pop out of the womb with the immune system of an adult, a layer of antibacterial solution seeping out of his or her pores at all times.

And, beyond that, happy? Can you imagine a little person who grows up with a jovial smile on their face at all times? Not only would this be creepy, it would be unrealistic. Furthermore, haven’t some of your biggest times of spiritual growth come from those “not so happy” times?

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The thing, pregnant self, is this: the world is going to look at the two baby girls that you are about to have as two girls who don’t fall into the, “happy and healthy” statistic.

But you believe that God’s rigged this whole thing, and that in His eyes, your girls are going to be much, much more than happy and healthy. You believe that they are going to be two beautiful beings that shine His light to all that come in contact with them. You believe that they are going to teach you, and those around you, more about His love than any other person (outside of that good looking, patient husband of yours!) ever has.

It will be harder at times than you would have ever planned for, yet more amazing and purposeful than you could have ever dreamed. Not always happy and healthy, yet always immensely loved and desired.

You will keep saying this whole “happy and healthy” thing, even after the girls are born, for a couple months at least. And that’s okay. There’s grace there. The truth is, we all tend to say and do some pretty careless things until we have put on shoes that teach us otherwise. But trust me on this one: you will be thankful for those shoes. No matter what you think now, there will be a time where you would not have it any other way, for you will believe it is God’s best for your family.

Dear pregnant self: you, too, are so very loved. Hold on tight, for an adventure beyond anything you have ever imagined is right around the corner.

Sincerely,

A somewhat wiser, absolutely sleepier, future you

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The Choice Muscular Dystrophy Presented My Family

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Dear Duchenne Muscular Dystrophy,

Seven years ago, we had two little ones at home, but there was still an empty seat at the kitchen table our hearts longed to fill. Soon, we were madly in love with a chubby little baby boy we only knew through photos. Fifteen months and a long flight across the ocean later, I had the opportunity to whisper in his ear that I was his mama, and I was never going to stop fighting for him. Who knew that an actual battle was right around the corner?

You did, of course. You were with him the moment he breathed his first breath. You had 23 months to wreak havoc on his little body before I even knew you existed. This makes me jealous of you in some twisted way.

You will strip away his ability to walk in a few years. Not long after that, he will no longer be able to lift a fork to his mouth or give me one of his famous bear hugs. And the heart and lungs are muscles too, right? Yes, of course they are.

When the diagnosis dust settled and I could finally see past the pain, I made a choice. Our whole family did. We could focus on what we were going to lose and what you were going to take from him, or we could choose to live. So, as hard as it is to say this to you, Duchenne… thank you.

Thank you for giving my husband the courage to walk away from a job that gave us comfort and cushion for a life that gives us time and the ability to be present. Thank you for letting me see that the dishes are not nearly as important as Lego creations or the spontaneous dance party. If you never came into my life, I would have missed years of moments with my children for the sake of busy.

Because you made your way into our lives, we had to truly decide what was important. It didn’t have a thing to do with college funds or credit scores. We lost things, but we gained joy. We love bigger and hold on longer. We look each other in the eyes and listen because you’re constantly there to remind us that the clock is ticking.

That chubby little baby from the photos has blossomed into the happiest 4-year-old I’ve ever known. I don’t know of a person who has met him and hasn’t fallen in love with his charm. When I look at him, I don’t see disability — I see hope. I see a little boy who, in spite of the cards stacked against him, is going to do big things. He is strong despite the strength you take from him every day. He is my hero.

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So, here it is, Duchenne. We thank you for what you’ve allowed us to see. This precious gift of knowing our days truly are numbered is priceless. But don’t start feeling all warm and cozy inside just yet because this mama still has a lot of fight left in her. Don’t you dare forget that moment I whispered in my son’s ear that I would never stop fighting for him, because I won’t. I know I can’t stop you from taking away his muscles, but you can never, ever take away our moments. I’ve got your number, Duchenne, and I say, “Game on!”

With respect,

Maddox’s mama

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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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This Morning My Son Brought Me Coffee. Here’s Why That Was Amazing.

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Since the dawn of time, darkness has cast its fearful spell on humanity. Now, I can’t prove this, but I’m certain Neanderthal fathers around the globe were lifting their knuckles from the floor to console their little hairy bundles of joy. No doubt, they were arguing the fact that indeed nothing was lurking beneath the bed rock. These large, lumbering dads were themselves terrified of planting a hobbit-esque foot squarely onto a hand-carved play thing. (Pre-Lego. Sadly, times have not changed at all.)

In truth, the darkness isn’t scary at all. The fact that we don’t know what hides under the cloak of darkness is what sends shivers down our collective spine. Yup, the fear of the unknown is a mighty beast… until you put a hand out in front of you, of course.

This morning I allowed our 9-year-old son to shower on his own, dress himself, sit down to his breakfast and sip on a cup of hot tea. If that doesn’t boggle your mind, just last night I asked that he prepare his old man a cup of Joe. All. On. His. Own.

Allow me to explain myself. Our son, Nicholas, is autistic, so a few of these life skills are coming to him gradually. You, sir or madam, might think of a bathroom and kitchen as everyday features in your home. I see them as potential horror chambers armed with medieval torture devices yearning to deliver hurt. My wife says I have a flair for the dramatic, which is plausible, maybe, but I have genuine concerns that Nicholas might hurt himself. Don’t judge me! I’m a dad, and I can’t help it! (Remember not to sit too close to the screen while you’re reading this.)

Yet, after sipping on my tepid (but wonderful!) coffee and observing young Nic conquer his morning routine, I realized how capable he really is. My own fears and concerns, although coming from a good place, have ultimately been more of a hindrance than any bruise or cut could ever be. This morning I had a parental eureka moment. There are many scary things out there in the darkness. When we face these fears, terrifying as they might be, realistically we’re only presented with two options. You can step into the dark and deal with the monsters lurking within or remain hidden in one spot hoping they don’t smell the scent of fear.

Whatever you decide, remember fear is a prison. We are harboring Neanderthal genes, whether you like it or not. I’m sure cavemen wouldn’t survive in a cage. So why don’t you take a deep breath and step into the dark. You might be surprised by what you find.

 

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Why I Believe These 10 People With Cerebral Palsy Are Exceptional

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Are you ready for this? In honor of March 25 – Cerebral Palsy Awareness Day – I’d like to introduce you to 10 amazing kids who have redefined what it means to break down barriers. They’ve torn the dis from ability and kicked it to the side.

First, let’s get through the awareness part: Many people with cerebral palsy (CP) had a brain injury before/during/soon after birth. Some had strokes. Some had traumatic births. For some, we’ll never know what happened.

The encouraging thing is that our brains are plastic, meaning that healthy areas can eventually compensate for damaged parts. The challenging thing is that no one can predict how that might play out. People with CP can have dramatically different outcomes. Some of the kids featured here aren’t yet speaking. Some aren’t walking. Yet. But remember the secret I shared with you in a previous blog post? Yes. That. We all have that in common.

In the meantime, different families wait for different things. We’re waiting to see if our Bunz will sleep in his own bed. Make friends. Outwit bullies. Go to college. Drive a car. Have his own place. Produce cute little grandbunnies who disregard authority. (He says that will happen when he’s 15. Hmm. Here’s hoping for 30!)

Despite all this uncertainty, one thing I believe is this: People with CP are exceptional.

In the words of a wise woman:

Some people might look at Bunz and say, ‘This kid is delayed, so he must not have a very good brain.” But would say this kid has an exceptional brain because look! Even with all of his physical limitations, he has figured out how to walk and move and talk and communicate. That’s not easy to figure out, but he did it. I’m not sure I would have been able to achieve all of that if I’d started life with the same limitations. So I would say that his brain is exceptional.

Without further delay, here are 10 of the most exceptional friends, neighbors and heroes a boy could have. And a few words about their amazing moms, who will always be my personal heroes.

Happy CP Awareness Day!

Ella, age 10

11072690_10205388304781553_1823093690_n The first time our physical therapist said the words “cerebral palsy,” she told us about Ella. How Ella didn’t let anyone stop her. How Ella wanted to play the harp, so she did. Ella wanted to ride horses, so she did. It didn’t matter that it wasn’t easy. You want to do something? You do it. Period. Back then, Bunz was a baby, and we weren’t sure what to expect. How fortunate we were to share a therapist with such a determined little girl! Hearing about Ella’s hard-won triumphs was exactly what we needed as we embarked on this journey. Her mom writes:

“Cerebral palsy has taught us a lot about trust. We need to trust that Ella will push through difficulties. That she won’t see us as nagging therapists but as loving parents. That her challenges will become her strengths.

At age 10, she’s been riding horses for eight years and playing the harp for four. We’ve discovered a whole community of supportive people and a world that not only accommodates difference but needs just the kind of difference Ella brings. We’d get rid of CP if we could, and sometimes it’s really tough, but sometimes it makes a space for joy and appreciation that simply couldn’t have existed otherwise.”

Bennett, age 11

img_3548 “Bennett has hemiplegic cerebral palsy from a stroke in utero. This year he tried trapeze on our family vacation and was thrilled to do his own style ‘one-armed monkey hang.’”

That’s from Bennett’s mom, Audrey. Let me tell you, that woman is fierce. We met about a year ago – she also happened to be touring a school when I asked how many of the K-1 students had individual education programs (IEPs). The principal replied, “None. We don’t worry about IEPs until the second grade.” I paused for a second. My mouth hung open in disbelief. Audrey came over and gently closed it, then handed me her phone number. I crossed that school off our list.

Audrey writes:

“Life with cerebral palsy is joyful, exhausting, fascinating, trying and inspiring for all of us in Bennett’s life as we watch him meet each day’s challenge with determination.”

Nolan, age 3

Oh! Now look at this charmer. This is Bunz’ “little bro,” Nolan.

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You’d never guess it now, but Nolan had no independent movement – not even rolling – until he was 18 months old. What changed that? The question you should be asking is who changed that. A lady named Anat Baniel. The lady behind the exceptional brain quote.

Her center in the San Francisco Bay area attracts families of kids with CP, autism, chronic pain, you name it – from all over the world. She also works with top athletes, musicians and dancers to hone their skills. A couple of years ago, we raised money to travel to the center for two weeks and we were blown away by Bunz’ progress. We didn’t want to leave. So, we didn’t.

Every few months, Nolan and his mom travel to the center from their home on the Oregon coast. The cost is exorbitant, but when you find a therapy that helps your child as much as this has helped Nolan, you find a way to make it work.

Here’s a recent photo of Nolan at the center. The photo is a little dark, but can you see? He’s taking steps! Soon he’ll be an independent walker. And a smooth one, at that!

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Here’s what his mom wrote. She’s incredible, by the way. And also a supermodel.

“This road that we’re traveling is not what we imagined before our sweet little boy was born. It’s so much more difficult. To watch him work so hard to complete what seems like a simple movement, to devote all of our time and resources to cutting-edge therapy… but then again, our path is so much brighter than we imagined. We’ve learned lessons about life, about ourselves, about the people around us and the threads that make this world unique. Every new milestone that he reaches fills us with pride!”

Julia, age 12

Here’s a beautiful sixth grader named Julia. I’m always struck by how thoughtful she is, and I don’t just mean that she’s kind. She’s a thinker. A musician. A beautiful person, inside and out. Really great kid.

Her mom sent a few photos, so you can see for yourself. She writes:

“Julia says having a service dog is one of the perks of having CP. While having a service dog means her pup, Isaac, can go everywhere with Julia, it also means years of training with your pup. Kind of like trying to tell your baby brother what to do! One of the perks of having CP, for sure, but also one of the challenges! Screen Shot 2015-03-25 at 11.22.51 AM

Being a stroke survivor and a kid with CP means getting the chance to “Play Ball!” with San Francisco Little League’s Challenger division. Meeting celebrities like Lou Seal is an extra perk!

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When Julia, with limited use of her right hand and arm said, ‘I would like to play the violin,’ her parents got together with her orthotist and figured out a way to make that goal possible. Julia is still studying and is now preparing for her first solo recital.

Photo by Betsy Kershner, 2013.

Julia is the tallest, fastest girl around while riding Beau, the adorable Clydesdale. While this is a fun and challenging activity for Julia, for her parents, seeing Julia riding tall in the saddle is one of the most healing, joyful experiences ever.”

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Enzo, age 5

Now, here’s a little boy who owns my heart. He holds the deed and everything.

I met Enzo when he was only a few weeks old; Bunz was about 1. His mom and I had connected through a Enzo’s mom is my kind of friend. And when I look into Enzo’s brown eyes, I fall in love every time. His mom writes:

“Now I know what pain is.”

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“Now I know what love is.”

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“Now I understand the meaning of acceptance.”

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Ashley, age 28

fb_img_1426901355436 My favorite exceptional adult has a few words for Bunz and other kids with CP:

“My advice would be to never give up, even when it is bad. My parents were told I would never walk or talk. If you know me, this is not the case at all (haha). Just because a doctor says something is likely to happen, doesn’t mean it will. Every case of CP is unique.

Some people might assume that you are not smart. When I tell people I am getting my Master’s, the blank stares are kind of funny. There are good days, there are bad days – it’s all about how you react. You will come across a lot of ignorant people, but the goal is to not let them get to you. You can either let the world win or you can put up a fight.”

Ashley’s mom, Ms. Gigi, was Bunz’ first mainstream preschool teacher. I remember dropping Bunz off on that first day and hearing another kid say, “He walks slow.” It hurt to hear that, but the kid was right. What came next, though, was totally awesome: Without even skipping a beat, Gigi responded, “Yes, but he’s a really great singer!”

I didn’t know it at the time, but Gigi and I have a lot in common. When I finally met her daughter, Ashley, I had to hold back tears because I’m so proud of her. She really is incredible. Before we met, I didn’t dare hope that Bunz would attend college. Now I’m hopeful. We are beyond grateful for the wisdom they share.

Malia, age 9

Here’s another young woman, Malia, who attends a local peer group for kids with CP. I love this group because until we attended our first meeting, it seemed like we were the only ones dealing with the challenges of CP. And then we walked in and saw our family multiplied by 10. It was such a beautiful thing.

Malia’s mom sent a few photos for us to admire.

“Our happy angel.” mg_3462

“Progress: Malia could not stick her tongue out before – now she’s sticking it out there!”

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Lily, age 13

Here’s Lily, an inspiring girl who never loses sight of her goals. Her mom submitted a few photos to illustrate the true meaning of tenacity:

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“This is Lily getting fitted for a body brace. We still haven’t found funding for the brace, but this is the first time she’s ever stood up mostly independently!”

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“Lily works so hard everyday to move forward.”

Shane, age 5

I’m only just beginning to know Shane and his family, but I have to tell you – there’s something completely heartwarming about them. For starters, Shane is an exceptionally bright kid. He’s going to do something spectacular in life – I can feel it. That’s what I’m waiting for.

Shane’s mom writes:

334415_4456831913318_1382364317_o “You might think that Shane is a big fan of the Giants. But no! He just loves to have his picture taken. I guess you could say he is a big flirt with the camera.”

The way we met is really special, too. It was New Year’s Day. Our family was having lunch at a “restro-naut” and Bunz was especially loopy – as it turns out, January was a bad month for seizure control. Convincing Bunz to eat makes me a little loopy, too. I remember steering him through the crowded restaurant to the restroom and nearly running over one of the waiters. “I have a little boy with CP, too,” he said. Out of nowhere. It was the best random statement anyone has ever made. I’m with you. We proceeded to have the most productive five-minute conversation possible, and then he brought Bunz a spill-proof cup of apple juice. The rest is history.

“We are so proud of Shane’s progress. What a fantastic thing to see him stand so tall in front of the Christmas tree with his Dad. He is so amazing!”

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And last but certainly not least…

Max, age 10!

I’m so excited to include Max in my CP awareness post! I’ve been following his mom’s blog, Love That Max, since well… forever. Years and years. We’ve watched Max grow up. Type his own blog post. Become an honorary fireman. He’s such an inspiration for us – for Bunz and thousands of kids and parents around the world. Everyone loves Max.

His mom, Ellen, writes:

“My son doesn’t know the meaning of ‘disabled’ — he just knows to figure out how to do things his way, on his own timeline. In other words, he rocks.”

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To that, I say yes. Happy CP Awareness Day!

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