A girl looks over stormy waters in winter time

Weathering the Storm of Intracranial Hypertension

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There is an ocean in my head.

The average person may have a lake inside. I imagine it with some nice beachfront property. I’m not saying that lakes are without their own problems. The shore may erode, and the waters can get murky. Storms may even pass through with their ominous black clouds. If you’re unlucky, you might experience something really bad like a waterspout or a whirlpool, but you can weather these storms because you know that soon the bright sunny days will return and you can go back to relaxing on the beach.

There is no beach in my head, no matter how often I search for it. There is no horizon in all directions, there is no promise of land or hope for calm waters after the storm. Because I am lost at sea, adrift in my own head.

When I stand the waves crash against my skull, the pain brings me to my knees. The tide calls the waves back and forth in steady rhythm until the sound of their breaking drowns out all else and I am left with the beating pulse of the ocean thrumming eternally in my ears. The sea foam splashes in my face, my eyes play tricks on me. My stomach churns from the constant sea sickness.

My brain tries its best to navigate these torrential waters. When the pressure of the waves threatens to pull us down into a watery grave my brain casts unnecessary weight overboard. Usually it throws out barrels of memories without discretion. If I’m lucky after the storm has died down a little we can go back and still find some of these memories afloat, but some of them have sunk to the depths, never to be seen again.

Sometimes my brain grows weary with the constant fight. It stands pale and gray at the helm too exhausted to manage a single thought. Listlessly it steers us without any awareness of the dangers around us.

My brain cannot sleep, it must be vigilant at all times or else we might drown. As quickly as it pumps out water more leaks into the boat. If my brain were to rest we might get behind on bailing out the boat and might never wake again.

And this is just an average day with the sea in my head, but there is even more to contend with than waves and water. Storms, massive tempests, come with little warning. The sea turns violent and black, massive waves far larger than my brain’s tiny ship, roll from the deep, their frothy tips striking downwards like spears against my deck. The sky becomes so black I forget even what my usual gray skies look like, and I yearn for the fog that was plaguing me just moments ago. Lighting, white-hot, sears across my skull. It strikes through my eyes, it travels down my spine until every limb has burst into fire.

There is no room for thought. My brain is taken up with the sole action of navigating me through this storm. We ride the tsunamis, fear and weightlessness clenched in our gut, and only hope that we will live to see tomorrow. The only thought is survive or die. The wind whistles through my ears, drowning out my cries as I beg for mercy, my body crumples into a heap as another lightning strike drives me to the floor.

I once tried to ask an expert navigator for help weathering my storms. “The ocean’s been here for years.” I explain. “But the storms just keep getting worse, can you help me?”

What I got from the doctor was a drivel of excuse. “It’s all in your head. There’s no way there’s an ocean in there, everyone just has a lake, stop being so dramatic. The condition is benign isn’t it? Just lose a little weight and I’m sure all will be fine.”

All will be fine? There is an ocean in my head. Can’t you see the saltwater pouring from my eyes? Can’t you hear the waves and the wind through my ears? The weight was never the cause, it’s a symptom because while your brain is catching rays at the beach mine has been fighting these gales year after year untold. I don’t have energy to spare to fight other battles, I’m spending every day just trying to stay afloat.

The navigator snapped back at me. “What do you want me to do? Should I put a faucet in your head to drain this sea? Should I put a tap in your spine like a maple tree and see what comes out? Do you want pills to calm the waves but bring the fog? Do you want to lose the lightning but get more sea sickness? Tell me, do you want any of this?”

I grow silent. I don’t want this, trading a worst for a bad when all I beg for is just one good day. What I want to do is take two steps off of the plank and end the mad sea, but my crew keeps pulling me back from the edge. My crew anchors me; without their help on deck I wouldn’t be able to focus on fighting the rough seas before me.

I don’t know what tomorrow brings. I’ve given up hoping on tomorrows because the ocean in my head is relentless and can change without notice. I can’t plan for the future, tomorrow, next year or the years after. Too much could happen. I could get dashed against the hidden reefs at any moment. I could capsize and drown in the blink of the eye. The only thing I focus on is the squall that is around me right now, and hoping that at the rise of this next wave I might see even a glimpse of land.

So today, like all days before, I somehow pull myself up and make it out on deck. The sea sprays all around, filling my vision. We just dumped a load full of memories but I can’t go back now, this fog is too dense.

Again I place my hands upon the worn wheel of this ship tossed mercilessly about like Poseidon’s plaything. I grip the wheel tightly because even if the helm is not responding I must keep looking forward to the horizon. Because today, like all days, even if I cannot control the raging of this sea, I am still the captain of my own ship.

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When Lyme Disease 'Ruined' My 'Perfect' Life

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I remember participating as teenager in various Sunday school classes, youth groups, and general life courses in high school where the teacher inquired the following question: “Where will you be in five years?” or “Where will you be in 10 years?”

I remember having a thorough, well-thought-out image in my head of what my life would look like in five or 10 years.  I planned to marry straight out of high school at age 18. I thought to myself: “I’m a socially apt, talented, smart, beautiful girl! I’ll snatch a man no problem!” I always planned that I would never date anyone who treated me like less than a queen, and I’d fall in love in a “whirlwind romance,” just like in the romance movies.  I’d earnestly mapped out my life. I’d attend college as a music major, while my husband attended for some other high end profession. I’d live in a modest home with perfectly trimmed lawn and flawless flower beds.

By the time I reached age 30 I’d be a successful businesswoman with her own vocal studio, and six children. My family would be the type that wears matching pajamas, and holds hands all in a row at the store. We’d wake up at 7 every morning, never a moment later! My house and children would always be clean my husband would always come home on time. He’d greet me with a kiss, and I’d always be dressed flawlessly with my hair and makeup precisely in place. My children would never complain or make bad choices and they’d all grow up to be successful, well-rounded adults.

As a teenager, my vision for life didn’t include imperfection and flaws. It wasn’t comprised of unexpected pitfalls and adversity. It didn’t encompass imperfection. It didn’t encompass Lyme disease. Lyme disease wasn’t part of the plan.

When I was 18, I wanted a husband, but instead I got a diagnosis.

I graduated high school as planned. I had two scholarships to the school I would study music at. I had a boyfriend, and a circle of friends that I was content with. I was ready to set sail into my “perfect” life. Little did I know that life is what happens after you make plans.

I’ll never forget the night I received that phone call. I was sitting in my small room in my apartment and my mom called to inform me that she had received the test results for the 30 vials of blood I had drawn a week prior to leaving for college. The reality is that I already knew the answer to those tests. I was struggling beyond belief at that point. My fatigue was impossible to fight. My muscle and joint pain made it hard to move from class to class. The daily panic attacks that took place were debilitating, and my endometriosis symptoms left me all alone, in tears, struggling through fits of pain.  I lost a lot of weight, and I just kept shedding pounds as the time went by.

Time passed.  More tests results came back positive for Lyme disease. In multiple moments of self reflection I thought: “I already struggled to watch my mom deal with Lyme. So why me? Why now? What about my dreams? What about my ‘perfect’ life?”

I came home from college three months into it. I felt defeated. I felt exhausted. I felt depressed. I felt sore and achy. I felt ugly. I felt lonely. I felt unlovable. I felt like a failure. I was in tremendous amounts of pain, and I couldn’t help but feel like it was my fault. I couldn’t help but feel like my dreams had been burned right before my eyes. I couldn’t help but feel like my vision for my life was never ever going to happen. Thoughts recklessly spun in my head on a constant basis: “What man would want a sick girl? I probably can’t even have children. I’m worthless.”

I spent a great deal of time in bed or asleep on the sofa. I stopped doing the things I loved. I stopped being the person I am. Through the pain and survival tactics I used, I forgot about myself. I left my identity in the distant past that I never thought I’d ever retrieve. I suffered excruciating pain flares that left me vomiting, seizing, and screaming desperately for relief. Pain medication didn’t help. For a long time I felt hopelessly aware that nothing I seemed to be doing was working. The panic in my inner being was inevitable. I lost my motivation for life. I found myself in unhealthy relationships because I desperately wanted someone to love me. There were times that I couldn’t walk by myself or stand up in the shower long enough. There were times I couldn’t wash or blow dry my own hair, and there were times I resolved to lay in bed and hopefully die there.

At one point the day came that I found myself in a place so dark, I found that I wasn’t even the same person anymore, and the person that I was I didn’t like at all. Laying around feeling sorry for myself wasn’t working anymore. Complaining about having to take 20+ supplements a day, and other forms of treatment wasn’t working anymore. Negative relationships and my negative attitude wasn’t working anymore.

Don’t get me wrong. We all must face a mourning period of our diagnoses. In no way does recognizing and fighting the negative forces around me invalidate my pain, or mean that I’m not in pain. I’ve struggled tremendously. I still do on some days. But since that dark time, I’ve had to change the way I think.

I got down on my knees one day and prayed with all my heart that God would help me out of this dark place. I began studying my scriptures and striving for understanding of why I’m really suffering so much. I began to develop a habit of those two things, and in the process I began to discover myself again. Not just the me that was in my distant past, but a whole new me that just needed to find enough light to bloom where I was planted.

I have fought a good fight, and I’m still fighting. I’m a changed person, and there’s still more to learn, and more in life to go through. Lyme disease doesn’t have to be restraining to the point where you can’t breathe. Lyme disease makes everything in life a little more difficult. In spite of that, I’ve found that if I look for the light and enjoy the Olympic moments that God blesses me with, it makes the fight a lot lighter and a lot more beautiful.

What I told myself back then about being worthless, ugly, unlovable, and broken were all lies. Lies that tore at me for the longest time. But what I told myself when I was a teenager about having a “perfect” life someday without flaw or hardship was also a lie. In a way, Lyme disease “ruined” my “perfect” life. And I’m incredibly grateful that it did.

I’m 20, I’m not married, and most days I wake up way past the time I plan to. I’m going to school to become a nutritionist instead of a voice teacher. I spend a large amount of my day taking supplements and undergoing difficult treatments. A large amount of the time I don’t wear makeup, and my outfits are less than flawless. I’m still in pain a lot and my energy levels aren’t as high as the average person. I’ve discovered that falling in a true and pure form of love doesn’t happen in a whirlwind, but in a slow progression that grows a little bit every day. I’ve learned that sometimes life is clumsy, awkward, and uncomfortable. I’ve developed a skill at catching the curve balls that life continues to throw at me. That’s life! And I’m grateful. I’ve learned that what I thought I wanted isn’t exactly what I really wanted.

My perspective on life has changed a lot in past year. You don’t get married because it’s easy. You don’t have children because it’s easy. You don’t fight daily battles and search for light on a constant basis because it’s easy. Life isn’t supposed to be easy! The idea that I do things because they’re easy and will make my life “perfect” and “flawless” is ridiculous, and lacks eternal perspective.

I believe God has blessed me with the strength and courage I need to keep pushing through, and to discover a better life for myself. He has blessed me with ability and intelligence to find ways to heal. He has blessed me with life long best friends who love and teach me  and understandingly and patiently suffer with me. He has blessed me with talents, skills, and knowledge that I continue to develop. He blesses me everyday with beautiful moments that I will always cherish, because even though I’m sick, I still am blessed enough to have those moments! He has blessed me beyond words.

Lyme disease “ruined” my “perfect” life.  But thankfully, Lyme gave me a beautiful, crazy, imperfect, painful, magnificent, glorious life! Life doesn’t have to be perfect to be beautiful. In fact, life is beautiful because it’s imperfect and because we have the opportunity to learn and progress in ways that allow us to understand our full potential. I plan to cherish the perfect moments. Laugh at the imperfect moments. Cry through the painful moments. And smile through all of the in between moments!

I haven’t let go of my dreams for my future. But my dreams for the future have shifted and changed. I have Lyme disease! So what? I believe God has plans for me, and Lyme disease isn’t going to stop me from that beautifully imperfect life that He has in store for me. It won’t always be easy, but in the eternal perspective of it all, it’ll be worth it. Lyme disease may have “ruined” my “perfect” life, but it also helped me build a beautiful life.

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The Tattoo I May Surprise My Brain Surgeon With During My Craniotomy

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My friend and I were joking yesterday about tattoos.

For some reason, it felt really important to get a tattoo before my last brain surgery. Something I could physically see or hold onto — something with predictability or permanence in a life that felt too unpredictable and chaotic and disordered.

(I should mention I have been to a tattoo parlor many times since my sophomore year of college actually, with every intention of getting a tattoo and have never been able to decide on a design. I have a hard time making decisions. My husband is truly a saint for putting up with this — not the tattoo design part, but just with me in general — you know, indecisive in life.)

I had this idea of a tattoo of a simple swallow, a bird that has a lot of significance in my life going back to my childhood. But maybe not even in color for the tattoo — just the silhouette. And see, swallows mate for life, so there was the tiny part of talking my husband into getting a swallow tattoo as well. We could match. I was thinking on my left wrist. I know, predictable and cliché, but I wanted to be able to see it post-op as I was laying around recovering.

The turn-around between the January 2016 brain hemorrhage and the February 2016 surgery was too fast. I mentioned the idea of a tattoo a few times to the medical folks preparing me for surgery, and they collectively cautioned it was not a great idea. “Poor timing. Too much risk of infection,” they would say. “You’ll have to wait until you’re completely recovered at this point. Your craniotomy is just too soon.”

Well, that was sure disheartening. My brain surgery was so soon that I could’t even get a go-be-brave tattoo beforehand for risk of infection affecting the procedure?

Damn. No brave, committed, mating-for-life birds. Damn, damn, damn, about the whole damn thing.

To be fair, I did wake up with a pretty significant tattoo above my left eyebrow. The permanent marker with my surgeon’s initials (to mark which side of the head to perform the craniotomy) would fade over time. The angry red scar would eventually begin to fade as well, but it is still always with me: my unplanned tattoo. Permanent disorder rather than the stability and order and sense of control that I was originally seeking.

I suppose I got my wish for that tattoo after all, although in a different way than I originally envisioned.

woman post-op craniotamy
February 29, 2016 — three days post-op, eyebrow incision, left frontal lobe cavernoma resection

And as my pre-surgery bravery project (since I couldn’t get that tattoo), working up my courage to go under the knife, I decided instead to cut off my long, golden curls that went down to the middle of my back. Before surgery, my neurosurgeon and I had discussed two different possible types of incisions: behind my hairline (preferred by a lot of people because of cosmetic reasons and no facial scarring) and an eyebrow incision, since this particular cavernoma was right on my forehead above my left eyebrow.

We agreed on the incision behind my hairline, which would require shaving part of my hair, and a lot of staples.

And so, I decided to cut off my hair thinking it would be a lot easier to have short hair instead of masses of tangled curls while laying around recovering, and it would be easier to keep it short while growing out the shorn portion.

And honestly, I thought to myself, cutting my hair will be good practice in working up my courage for this surgery.

Imagine my great surprise, then, when upon waking from the four-hour procedure, it turned out my surgeon had changed course and opted for a minimally invasive supraorbital “eyebrow” craniotomy instead.

So now, an eyebrow tattoo and short hair! This was quite a change.

And today? After my left frontal lobe cavernoma resection just 10 months ago, we are now considering craniotomy número dos, a parietal cavernoma resection.

This is getting so ridiculous.

Which brings me back to my friend and I yesterday joking again about tattoos.

See, I’ve kept my hair short since my February surgery. It was easier, and I rather liked it. I cut it even shorter, a pixie cut. I even experimented with color a bit: first blonde, and then dark with red undertones.

Still here, still being a little bit brave, just with hair color this time.

And then I had this stroke, and the ambulance, and the hospital again, and my neurosurgeon: “You should take this out.” Another potential surgery.

Naturally, like any person, my first thought was, “Well, maybe I’ll have time now to actually get that tattoo!”

Except, I’ve gotten a lot more cynical over the last year. Brain surgery will do that to you. Don’t get me wrong, I rely on gratitude almost every minute of every day to get by. It’s how I survive.

And humor. Dark humor. Lots and lots of humor.

So my friend and I were sitting on my couch, talking about the latest plan for my brain. My friend is a planner and a medical professional, and she wanted to know the plan. I tend to freak out hearing the plan in its entirety or at least the end of the plan — surgery — so I like to break things into tiny little bite-sized pieces. First, get scans from hospital. Call UCLA. Send scans to UCLA. See what they say.

That was the end of my plan. I rather liked the end; it helped me breathe a little easier.

But my friend wanted to know all the options: craniotomy here in town at our local hospital, go to UCLA or USC (the big research hospitals), recovery, location, etc.

This got me thinking about the particulars, which makes me freak out a bit. OK, a lot.

Which got me thinking about my unintentional eyebrow tattoo, and the swallows that mate for life, and really shaving my head this time (a behind-the-hairline incision for the parietal resection), and how on earth am I going to cope this time, again?

So I stopped my friend mid-sentence, and I tossed aside her perfectly logical medical plans, and said: “I think I should get a tattoo.”

“Only this time,” I continued, trying to find some humor in this plan for two craniotomies in one freaking year, “I think I should shave that part of my head now and get a tattoo on my scalp for my surgeon to find once the medical techs shave my head. I’ll get the tattoo now, regrow my hair before the procedure, and then it will be like a surprise for the surgeon to find.”

My redirecting of the conversation worked. We didn’t have to talk about the brain plan any longer. Now it was just laughter about my absurd scalp tattoo, the next bravery project, the way I might survive the overwhelming fear of this next procedure.

My first suggestion was a flock of vultures.

I thought it would be pretty hilarious for the surgeon to discover a flock of vultures under my hair, circling the site of the intended incision.

My friend and I laughed about the absurdity of everything, the vultures and another brain surgery, for a good five minutes. I even showed her my idea for a writing project, a new blog, with the image of a lovely flock of birds flying away in the top righthand corner.

The birds, in my mind, are the vultures.

I told this idea to my mother later that day, and she grimaced. I persisted. Eventually, she gave up and even began to laugh, contributing ideas to my scalp tattoo scenario.

“How about scissors?” I suggested.

“A saw,” countered my mother. This made me laugh. Hard.

“A pirate map, with ‘X marks the spot,’ so the surgeon knows just where to cut,” I replied.

I still like the vultures. My mother thinks this a terrible idea and rolled her eyes at me to let me know her exact thoughts on the matter of my scalp tattoo.

Maybe I will get the wrist tattoo then, after all. Perhaps something more poetic: a phoenix rising from the ashes. A dove wishing me serenity and peace. A swallow like the graceful diving swallows my grandfather and I used to watch together when I was a little girl as we blew downy soft feathers from our hands, which the swallows would use to line their nests in springtime.

Or a flock of vultures on my left wrist, circling a saw. To signify the absurdity of it all, the humor, coping one day at a time, and my gratitude for finding a little bit of laughter in my day at the ridiculousness of a secret scalp tattoo.

Because the reality is, pretty soon I might actually have that scalp tattoo, staples and screws and hardware and all, whether I like it or not.

At least the vultures will still make me smile.

Follow this journey on Broken Brain, Healing Heart.

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When People Call You 'Selfish' For How You Manage Your Pain

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For people with chronic pain, self-care is not selfish or irresponsible: it’s survival.

I have spent about two-thirds of my life feeling somewhat selfish because of my invisible illness: chronic pain. During the time in which I was searching for a cure to my pain, I was consumed by anger, depression, anxiety, loss and pain so severe I could not even will myself to read a book – something I had always loved.

I was called selfish many times. I was the queen of cancelling plans at the last minute and missing classes because I was experiencing so much physical pain and subsequent depression that I could not get out of bed. I missed important family events because I could not imagine being around the people who thought I was this amazing girl headed for college and risk them seeing the pain even my smile could not hide. I was embarrassed, ashamed, confused and in so much physical and emotional pain over being “selfish.”  

However, I was not being selfish because I was doing whatever I wanted to do and not caring about letting people down. I wanted to be with my friends. I wanted to be in class studying. I wanted to be around the people I loved more than anything in the world. Instead I was balled up in bed alone either crying until the tears could no longer fall or just staring at the wall. Some may call that selfish; however, I truly was just surviving and, over the years, hanging on by a thread.

So not only did I feel guilty for an invisible illness that had yet to be diagnosed as chronic pain, but I felt hated because everyone thought I was just a selfish person who ditched the people she claimed she loved. Hell on earth. There are no other words to describe those 10+ years of my life: pure and utter hell, every second of every day of every year.

I no longer look back and see myself as being selfish. I was surviving alone with a pain no one could see and a pain I could not fathom.

Fast forward to when I finally accepted my chronic pain and learned how to manage this disease naturally.  

The first amazing thing to enter my existence once I came to a place of acceptance was hope. Then the work began. I began managing pain naturally when I was 22; I am now 35 and it is still part of my daily routine so I can manage pain without pain managing me. I still have chronic pain. I still have difficult hours and sometimes difficult days, but the good days far outweigh the bad. Is there a coincidence that how I now manage pain works, whereas how I used to manage pain (by searching for a cure) didn’t? I truly do not believe so. Is my life perfect? Hell no. However, I am in a place I never thought I would be in after my bike accident and the subsequent pain. My dreams have come true, and more of my dreams will come true. There is no exact destination for me, and the journey does have its ups and downs, but I am finally the Jessica I was meant to be.  

With that said, I do find that people still call me selfish at times. I would be lying if I said that term did not hurt, but I am working on not allowing other people’s views on how I live or manage pain to interfere with my happiness. Like the saying goes: “Never mock a pain you have not endured.” I have to set some limitations in my life in order to control my pain naturally. I cannot do everything a person without chronic pain can do. Let me rephrase that: I can do everything a person without chronic pain can do, but if I did so, I would be right back in the first paragraph of this article – hell on earth. I have to take care of myself – body, mind and spirit – and know and respect my limitations in order to take care of the people I love and be the person I was meant to be.

I say no to invitations and people think that is very selfish of me. Do I say no to all invites or requests to spend time with me? No. However, I do say no when I know a certain day is already busy and going to one extra thing will truly intensify my pain. I listen to my inner wisdom and say no.  

I have an odd sleeping schedule. I go to sleep early – between 8 p.m. and 9 p.m. on most nights. There are the occasional nights I stay awake later to spend time with the people I love, but on average I fall asleep with a book in my hand around 9:00 p.m. – and yes, on the weekends as well. I am a morning person and part of my chronic pain management is a good amount of sleep, exercise and meditation. I am a mother. I like to wake up before my 4-year-old so I can exercise and practice a small meditation without her angelic toddler voice saying, “Mommy, Mommy, Mommy” over 50 times. I have been called selfish for my sleep schedule.  

Those are just two small examples of why I am called selfish at this point and time in my life. If I could turn back time I would never have fallen off my bike and I would never have had chronic pain. I cannot do so. I understand why people may see me as selfish at times, but what they do not realize is that I still struggle with the fact that I do have chronic pain. Although I am thrilled I am living a happy life despite chronic pain, it still saddens me that I am unable to do everything I would be able to do had it not been for my invisible illness.

I beg all of you not to allow (or at least try not to allow) what others say to you regarding how you choose to live your life affect you – and this goes for everyone. I am damned if I do and damned if I don’t, so to speak. If I do not manage pain in a healthy manner I will be a miserable mess and people will call me selfish because I cannot really do anything. But if I manage pain naturally I am also called selfish because I have to set my own limitations. So what is the lesson in that? You have to do what you know intuitively is right for you.  

If you are not taking care of yourself as only you know how to do, then you are not helping anyone, especially yourself. People will always talk and have an opinion. Tune that crap out. None of you are selfish people. I know you are all doing the best you can and if you had a choice, you would not have chronic pain. You are not selfish people; you are survivors.

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Learning to Love My Life With Chronic Lyme Disease

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Chronic (persistent) Lyme disease can completely alter your life in ways one could never imagine. I used to be carefree, full of energy and adventurous. I was a veterinarian technician and found immense joy working with and helping animals. I was always game for things like white water rafting, parasailing or horseback riding. Those are a few of my fondest memories. I use to exercise and run everyday. But Lyme disease forced me to give up so many of those things because I could no longer physically apply myself. My fatigue, joint pain and cardiac issues are relentless and keep me from the adventurous activities.

I will admit that some days it is hard to love myself when I have so many limitations and so many days when I am bedridden or housebound. Years of struggling can really wear a person down mentally, emotionally, spiritually and physically. Occasionally feelings of guilt, loneliness and depression begin to creep in. I find myself praying multiple times a day just get through the tougher days. However, in these times of desperation I remind myself I have made it through 100 percent of my hardest days. I realized I was much stronger than I ever envisioned. I began to find joy in the small things I can still do, even if it’s only once in a while. I made a conscious decision to do whatever it takes to get better and continue to see that light at the end of the tunnel.

After all, we were not put on this earth to give into our battles, or even to be happy 100 percent of the time. We were put on this earth to learn, to grow, to overcome obstacles, to find happiness in our situations and live life as best we can. Ironically, having multiple health issues has taught me to never give up and never lose hope.

woman with long brown hair standing outside under a branch with autumn leaves

Though Lyme disease has taken many of my opportunities and dreams, it has been a tremendous mentor to me. I’ve learned much about myself, others and life in general. I’m in a marriage that has endured the emotional roller coaster ride known as chronic illness, yet my marriage is stronger than ever. I appreciate those loved ones who remained by my side even when I was a shell of the person I used to be, and that made me love and appreciate them much more. I still have hope that one day I will be able to do all or most of the things I used to adore. I still have hope that one day I will be that carefree and energetic person I was so long ago.

So for those of you struggling, please know you are not alone. Please know this life you were given is worth the fight. If you are struggling, find ways to permeate happiness and love in your life. Understand it is not your fault you are sick. Fight fear and adversity and instill hope in your heart. Above all, love who you are regardless of your tribulations because that is the best thing you can do for yourself.

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Why I Will Keep Telling People About My Daughter With Dup15q Syndrome

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I’ve been wanting to write about this topic for some time but was always unsure where to start. What I want to say forms over and over in my mind, then, just as quickly, dissolves. The angry part of me begins and then quiets down. The tired part of me begins, then quiets down. The advocate in me speaks up and is usually the voice that stays, making the right words come. It’s the advocate in me that speaks now.

I talk a lot about Morgan and her having Dup15q syndrome. I talk a little about my family and how we handle everything. I’ve asked myself many times whether or not I aught to talk so much about everything. To share so much about doctors appointments, tests, therapies, etc. This question is one I’ve visited often, but always, after much thought and consideration, come to the same conclusion: I’m drawn to openly discuss our Morgan. To share her with the world – or at least with anyone who is interested in knowing about her. And time and again, I’ve seen some incredible results from my efforts to be open.

There are those who do not agree with speaking so openly about medical issues and disability. These things are viewed by many to be “private,” and talking about these things is in poor taste. I can see that.

I also see where many are uncomfortable with disability and illness in general. I’m not sure why this is. Perhaps it’s a strong reminder of our own fragility? Perhaps it’s being different that makes some uncomfortable. The possible difference in looks, mannerisms and behavior that some have trouble dealing with. Perhaps, it’s the different lifestyle of the day-to-day challenges that most simply cannot relate to. While I don’t share any of these views, and I don’t think there is any reason to be uncomfortable with disability or illness, I can see where these views come from.

There are some who are just plain uncomfortable with the idea of being so open about this life we are living.

So here’s why keeping everything to ourselves just doesn’t make sense for Morgan’s situation and our family’s well being.

When Morgan’s team of doctors, specialists and experts consist of 17 different people, the situation ceases to be private. Every aspect of her is discussed. We work with her. I share what’s going on with them, they have suggestions for me, and the cycle continues. It’s a lot of work. But something amazing happens when I open up about everything. I usually get the help we need. I get the information Morgan needs. Magic happens. If I’m not as talkative one day, or I’m not focusing my energy completely on every facet of her care, her doctor or therapist doesn’t get the whole picture. So many times I end up learning about some new technique or therapy available by sharing things I’ve noticed about her or something I’ve read – this happens to be how Hippo-therapy came into the picture. I talk way too much. And it has proven to benefit Morgan time and again.

I’ve spoken to a few med students upon request. I’d like to think our conversations will somehow make a difference. That by answering their questions and allowing them to learn from us, they will be better for it. What if one of these students takes a special interest in genetics or neurology. What if… perhaps just wishful thinking, but still… I’ll keep talking and teaching.

We shared our daughter’s story with all state legislatures to help lobby for the Utah Baby Watch Early Intervention Program, which directly affects Morgan and our family. We were only one of many families who participated in lobbying. I’m happy to say we saw good results from these efforts. This was the first time I had to get involved in politics on behalf of Morgan, and I dare say it won’t be the last. It’s often up to family members and caregivers like myself to advocate. And I fully intend to change what I can.

People get nervous about Morgan. When dropping off and picking up my son Kyle from school, there are those who may stare. But something amazing happens when I speak openly about her. The stares and discomfort lessens. They see I’m totally comfortable with talking about her, and that affects how they act around her. When you are your daughters’ liaison between her and the rest of the world, not talking about her differences as well as her similarities does her a disservice. I’m not ashamed of her, nor will I ever be. Kyle is not ashamed of her either and introduces his little sister to his friends with obvious enthusiasm. She is different, and that’s OK. Not everyone will be comfortable with her, and that’s OK too.

I’ve seen nothing but good come from talking about Morgan. So I will keep talking about her and sharing her story for as long as I have strength to do so.

Follow this journey on RebeccaMarcario.com.

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Thinkstock photo by Choreograph

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