Thursday, November 15, 2018

6 years...

November 16th, 2012...

6 years ago I became dependent upon a feeding tube. They told us this would be a temporary thing; that I would stop eating food entirely for three weeks, then we would slowly reintroduce food until we could find which foods I could tolerate and which foods were making me ill. They thought the process would take three months at max, but two months in I only had three safe foods and none of them could sustain me nutritionally.

Here we are six years later and if you have read my blog before you would know, the whole idea of temporary is obviously far from the case... In fact, my health is now worse than it was six years ago. But today I do not want to sulk in the sadness of what I thought my life was supposed to be like. Today I want to celebrate what was made possible because of this day six years ago. I was 'lucky' when I had my feeding tube placed because my brother already had a feeding tube so my family was well connected to the online community support groups. Shortly after having my tube placed, I realized there was no online support group specifically for teenagers with feeding tubes. The need was there but no one was stepping up. I decided I couldn't wait for someone else to put forth their time to create a safe space where teens and young adults could realize they aren't the only ones having this experience, a place where they have friends who simply 'get it' and a safe place they can vent about their feelings away from their parents.

Because of this day six years ago the discussions began, that allowed me to create the "Teens with Feeding Tubes" online community. On November 26th, 2012 the group was officially launched. Currently, our community has roughly 350 members, from nearly 20 countries, and has served more than 500 young people in six short years. Unfortunately, in those six years, thirty-seven members of our group have died due to their chronic illness. It's the most heartbreaking part of being in this group. We have chosen to seek out others in situations similar to our own because we know how devastating it is to feel like no one understands what we are going through, but we would rather love them knowing our hearts will break than never knowing them at all. It is a privilege to have known them. It is a privilege to have loved them.

Today I made a post asking members of the online group to finish the statements and the answers blew me away. They reminded me how important the work I do is even on the days when I think I have nothing left to give, even on the days when I wish I never got sick in the first place and even on the days when I think I am not doing enough to make a difference. They remind me that what happened to me six years ago today was not a mistake. I hate the "everything happens for a reason" cliche just as much as the next guy but if I had to endure some hell for a little while to help make someone else's burdens lighter then it is all worth it.

With their permission, I wanted to share some of their responses with you:

"This wonderful group has given me confidence, knowledge, a laugh on a bad day, a virtual hug when another person is taken from this world by different illnesses, inspiration, a distraction from pain or just life in general, a smile when needed most, strength, but most of all hope. This group has given me hope of what I can achieve like going to school, being a normal teen, or go to college. Hope that maybe my health will improve one day but also that if it doesn't imporve that where I am right now is okay and there is hope." - KB
"This group provides me with a support system where I don't need to explain. Everybody just knows... And that is the most priceless gift God has given me." -TM
"This group has provided me with the confidence to bear my tube unapolgetically." - EK
"This group has brought me something I would have never expected: comfort." - ER 

Wednesday, September 19, 2018

What Is Mitochondrial Disease?

“What is Mitochondrial disease?” They ask as I begin to go into my spiel that I have rehearsed a thousand times before. I tell them, “Mitochondrial disease is a terminal, genetic condition in which the mitochondria that create all the energy in a person’s body fail to function properly. This leads to organ failure and eventually death as the disease takes over. It’s a disease with no surgery, no magic pill, no treatment, no chance of remission and worst of all, no cure.”

But is that really what it is? With every passing day, I begin to realize I can’t explain Mitochondrial disease. I can tell you all of the statistics but that would mean nothing unless you have experienced this disease for yourself. Mitochondrial disease is so much more than the statistics, the physical symptoms, and the medical terminology.

“So what really is Mitochondrial disease?” They ask.

It’s the parent who searches their child’s diagnosis on the Internet only to learn that there are no treatment options, but that doesn’t stop them from trying to find something to save their precious baby.

It’s the teenager who is labeled as lazy, even though their body doesn’t have the energy to keep their organs functioning, much less get out of bed in the morning.

It’s the bride who will never walk down the aisle.

It’s the young adults who had to drop out of college because their health is too unstable.

It’s the parent who wants nothing more than to be able to care for their own child, but can’t even care for their self.

It’s the child who will never get on the school bus for their first day of kindergarten.

It’s the boy who went from being a star high school athlete to a boy who can hardly walk on his own.

It’s the siblings who have to cope with the thought of their brother or sister leaving this earth to live in Heaven.

“So what really is Mitochondrial disease?” They ask.

It’s a disease that has changed the course of my entire life.
It’s a disease that has brought me so much fear and uncertainty.
It’s a disease that has tried to stop me from pursuing my dreams.
It’s a disease that has forced me to face my own mortality.
It’s a disease that has made me cry myself to sleep.
It’s a disease that has robbed me of my high school years.
It’s a disease that has left me in earth shattering pain.
It’s a disease that has and always will be apart of me.

Mitochondrial disease is heartbreaking. It’s ugly. It's scary. It’s not fair. It's a nightmare I will never be able to wake up from. The medical implications of this disease are only half my story. No one will be able to know what mitochondrial disease until they experience it for themselves because it is in that moment when they realize all the emotional and social implications of the diagnosis. As much as I want people to understand what I am going through, I am thankful they do not know, because if they did then that would mean they have to live with the same horrors I have experienced. I wouldn't wish that on anyone. While I know the average person will never be able to see the strain this disease can place upon a person, I hope this post is a start. From here on out you'll never be able to sit back and say you were unaware of a disease that rips babies from the arms of their parents, that claims the lives of bright and bubbly teenagers, and that forces children to grow up without their mom or dad.

This is Mitochondrial disease.

Sunday, September 16, 2018

If I Never Had Mitochondrial Disease

If I never had Mitochondrial disease…

I could live carefree.

I would only know that the mitochondria are the powerhouses of the cell.
I would wince at the sight of a needle.
I would have spent my high school years out on the soccer field.

I wouldn’t have scars like a road map across my body.
My biggest fear would be having a tooth pulled.
I would have all the energy to run around the world.

If I never had Mitochondrial disease…

I would take life for granted.

I wouldn’t know the power of a supportive community.
I wouldn’t know how to swallow a pill.
I wouldn’t know how to pronounce medications like canakinumab… much less spell them!

I wouldn’t love a little harder.
I wouldn’t be able to eat while I sleep.
And I wouldn’t live a little deeper.

But most importantly if I never had Mito I would never be me.

Monday, August 6, 2018

People Don't Always Say The Right Things...

Let's face it– people don't always say the right things. Thankfully, the intentions of most people are good at heart, but often times the words they say don’t come out that way. 
It's hard to know what to say in difficult situations where there isn't much anyone can say to express their empathy and support to their friend in some of the darkest times of that friend's life. Mostly when people do this the words that come out of their mouths is only used to comfort or make them feel better about the situation rather than comforting to the person who needs the support. On a regular basis, I have encountered situations that go like the one above. When people find out I am chronically ill, they often respond with poor word choice, a sense of shyness, or inappropriate statements that force me into an awkward silence as I start blankly at them trying to figure out how I should respond– often times I am unable to respond. Here are a few of the statements I have heard that I feel people should refrain from using along with a couple of phrases about what to say instead:
(Reminder... as crazy as it may seem, all of these words have been spoken to me at least once in the last few years.)

1) Refrain from saying: After hearing your story, I realize my problems are minuscule in comparison to people like you who are living such horrible and tragic lives. It shows me my problems aren't something I should freak out about, because many are going through so much worse."

First of all, I don't like it when people are emotionally dismissive of their own problems.  Phrases like this have always irritated me because I know there are countless people in the world with problems that might be worse than mine, but I also know that just because someone has it worse doesn't mean my problems are insignificant. Who are they to say my problems are worse than theirs? They aren't worse, they are just different. Life is not a competition of who is hurting more than the other. Secondly, the stranger tried to tell me about my life, as he made an assumption that my life sucks because I am sick. I don't think my life is horrible and only to an extent would I ever consider my life is tragic. Yes, bad things have happened to me and that's pretty unfortunate but there are still so many good things out there. The good always outweighs the bad, even in the most desperate of situations. I am still doing fairly well despite the events of my diagnosis. I am headed into my junior year of college, I spoke in front of 31,000 teenagers a few weeks ago, I have an amazing group of friends who are now my family, and I live in a community where I feel loved, supported, and valued. There isn't much more I could ask for!

Instead, say: "Your story reminds me what really matters in life because despite all that you are going through you are still pressing on. It makes me realize I too need to be as resilient during my own struggles."

By saying this, it does not dismiss the problems you are going through. This statement also acknowledges that I know what it means to struggle but doesn't express your view of my life as horrible.

2) Refrain from saying: "I would kill myself if I was in your situation."

I would like to think that this one is pretty obvious as to why someone shouldn't say this but I guess not... Suicide is NEVER the answer! I don't understand how referencing it as an option could help someone "feel better" about their own situation.

Instead, say: "I don't know what your situation is like, but I know it can't be easy."

By expressing this it shows the person that one can see their situation is challenging, even though they may not be able to relate to their pain on the same level.

3) Refrain from saying: "I could never do what you have to do."

A person can never understand what they are capable of until they are thrown into that situation themselves. I never thought I would be able to stab myself with needles every night but look at what I am doing now. It beats the alternative... There are many days when I don't want to do this anymore, but if I woke up one day and decided I couldn't do any of this anymore I would be dead– plain and simple. I still struggle with the idea of not wanting to do this, but I have to. As long as someone is provided with the proper support and love they too can make it through some of the hardest days of their lives.

Instead, say: "I see you and I am here to support you."

Remind the person that they are never alone in their struggle. People need to be reminded that they are loved. They need to be reminded that there's a group of people who know they are struggling and want to help. While those people may never fully understand how challenging their struggle is, it is nice to hear someone acknowledge another's heartache.

I understand it is incredibly hard to know what to say when there is nothing to say and one doesn’t know how to help. Sometimes, it feels easier to say nothing at all, however, people don't always need you to help them through things. What they need is for you to listen to them– to sit by them and hold their hand. Sometimes that is the best thing someone can do for a person... Everyone can remind someone that they are not alone in all this. The truth is people suck but taking a step back from our busy lives to help another suffering soul can make all the difference in the lives of others.

Monday, January 22, 2018

There Is No Hope

Four years ago today the doctors told me I had no hope - Damn, did I prove them wrong or what?

Four years ago I was frozen by the conversations we began to have about my future following specialized medical testing, however, I still understood the big picture. The consensus of the conversation went along the lines of the doctors agreeing with the suspected diagnosis of Mitochondrial Disease, like my brother. I have total digestive tract paralysis in nearly every section of my gastrointestinal tract - medication would not make a difference in the functioning of my gut, and surgical routes no longer became an option. They said I would be dependent on IV nutritional support for however long my body chooses to hold out due to the long-term complications of IV nutritional support in combination with the overall condition of my body. While all of what he said has proven to be mostly true, my body has continued to hold out fairly well. No teenager should be forced into conversations like the one my family had in 2014. Unfortunately, every single day teenagers just like me are being forced comprehend and decide how they will respond to the devastating diagnosis.

When the news dropped, every thought racing through my head filled me with fear. For a little over a year prior to that day my life already felt as though it was crumbling underneath me. Everything I had built myself to be had began to had fallen apart. The news that the doctors told me was the final straw that broke me. Why did this have to happen to me? It wasn't supposed to be me. It's not fair! I wished I was an average teenager with an average teenager life. I wanted to be me, again. The me who played soccer every weekend, me who was an honors student, the me I was before I got sick... I was so angry with God and everyone even if it wasn't their fault. I did everything that was asked of me, I sat there and I took it. I stuck it out through all the scans, all the needles, the surgeries, the fifteen million medications, fatigue, sleepless nights in the hospital and the earth-shattering pain that seems like it will never end.

The days were long and each conversation we had with the doctor's left me feeling defeated. Even the doctors didn't have hope that things would get better, so how could I? I thought it was the end of my world. I was a terrified fifteen-year-old girl who was scared out of her mind while trying to process a very adult-like situation. No one could blame me for feeling that way though, even the doctors said they didn't think of much could be done to help my situation. I walked out of the hospital that day with a blank expression on my face. I didn't cry, I didn't speak, none of us did. We were all still trying to process what was happening. We got home a few days later as all of this information set in; I cried myself to sleep. I knew it was bad, but I didn't think it would be that bad. The thought of it being this bad didn't cross my mind because stuff like this isn't supposed to happen to someone like me.

It is only now, years later when I can truly understand how far I have come since they thought I had no hope for a future of good quality. That doctor told me there was no hope but he was so wrong. I'd like to think I am filled with more hope now than ever. I realize each person has a different mindset regarding the concept of hope. Maybe that doctor and I had our eyes set on different hs. His idea of hope was that one day he would be able to restore my broken body. He had hoped I would get the chance to return to "normal" or whatever that may look like after going through a serious illness.

However, my hope is much bigger than a doctor saying, "I am sorry, there is nothing we can do." My hope is larger than life. My hope focuses more on being thankful for everything that I am, rather than everything I am not. I changed. A serious illness does that to people. The emotional scars leave bruises that will never go away. I am not the young girl that I was before I got sick. I am a writer, a big sister, a photographer, and a college student. My hope for nothing more than to get back to living. I don't care whether or not that idea of living is filled with fifty million medications and needlesticks as long as I can use my life to reach out and fight - not only for myself but for others who don't have that chance. My very last hope was and still is to advocate, speak out, lead and preach it. As Matthew West said in a song of his, "Because if not us then who?" So Lord, let it be me if you must. There are hundreds of terrified teenagers like me, who cry themselves to sleep as pain stretches over every inch of their failing body. Let my life be the reason that our society wakes up and makes a difference in how we support teenagers with serious illnesses.

Now more than ever my hope is roaring like a lion.

My hope is in the hands of God.

Monday, November 6, 2017

It Wasn't Supposed To Be Me

            My youngest brother, Tyler, was always known as the sick one in our family.  Tyler was born seven weeks premature. He was a tiny little thing but relatively healthy. The doctors promised Tyler would lead a normal life once he left the NICU. They were wrong. Shortly before his sixth birthday Tyler was diagnosed with a terminal, genetic condition known as Mitochondrial disease. This disease has no treatment, no chance of remission, no magic pill and worst of all no cure. It was for this reason our family friends often labeled Tyler as the sick kid in our family. It was true, neither I nor my other two siblings had any obvious signs of the condition. Because of his health, I grew up believing myself to be his caregiver. I held onto this belief until my health collapsed shortly after Tyler's diagnosis. They didn’t need to say a word; the look on their faces was more than enough. I felt as though my life was sucked up by a tornado, spit back out and shattered into a million and one pieces. On that day, my belief took a new shape. I no longer had the mindset that it was not supposed to be me. After I cried it out, I picked myself up and forced myself to believe I was going to get through this with the help of my home team.
           That was until my health began to worsen around the time of Tyler’s diagnosis. At this time, my health was never made a priority because I always felt bad to complain when Tyler was often in and out of the hospital for weeks. To be diagnosed with Mitochondrial disease the patient should have at least three organ systems that were either failing or working inadequately. I did not yet meet the criteria, so the doctors brushed it off as nothing too serious. By 2012, my body began to send itself into allergic reactions for what seemed to be no reason at all. I was unable to maintain my weight on my own and puking was a regular occurrence in my life. Procedures revealed I did not have one of the diagnoses my brother faced. While this was a huge relief, it also left us without any answers as to what was making me sick. Since I didn’t have that diagnosis the doctors told us whatever was making me sick was likely not related to my brother. Little did we know that was anything but true... To control the allergic reactions the doctors placed a feeding tube to provide my body with unflavored medical formula made of the most basic nutritional components. Almost immediately, the allergic reactions began to slow. It was such a relief to know that we were making headway in figuring out how to fix me. I knew there were many others, my brother included, who were not as lucky as I was. My beliefs shifted from questioning why this would happen to me towards being thankful I was one who the doctors could help.
            I thought I was able to cope with this new normal, but my world fell apart once again when it came as a shock to us that my health was deteriorating. Four months later, the doctors reassured my mom and me by saying they never foresaw my health progressing in the way it had. In a weird way, it made me feel better knowing the doctors were just as blindsided as I was. This time there would be no happy ending. This time it was for real. I could no longer believe that the doctors could fix me. I noticed my beliefs altered as I went through these hills and valleys in my life. I had to learn the hard way that not everything in this world will turn out like you believe it should.
            A few weeks prior to the end of my freshman year of high school, I had another major surgery. Despite the complexity of this surgery, it was believed that I would recover well. Sadly, that never happened. Strangely enough, I ended up in a worse position when I came out of the operating room versus when I went in. Almost immediately, my mother caught on to the physical cues before I had to say a word. My mom already knew what to look for because she had previously seen it in my brother. Over the summer my organs began to shut down. I weighed less than ninety pounds, my immune system was attacking itself, my autonomic nervous system began to fail, and my digestive tract became paralyzed. To say I was falling apart was an understatement.
            I grew up believing the doctors knew all the answers. I quickly learned that belief was anything but true. My parents sought after some of the best doctors across the globe and all of them apologized to my parents because they had nothing to offer us. As if it were any consolation, these doctors told my parents one day they hoped they could save kids like my brother and me, but for now, they didn’t have the funds or tools needed to provide us with treatment options, much less a cure. Our geneticist told my parents and me medical research was not far enough along to help us. We were another family she had to inform of the heartbreaking reality: Science wasn’t smart enough yet to save us.
            Being the good parent she is my mother would not accept this. Day in and day out she would plead with us to see one more expert across the country, to comply with taking our medication regularly even when it made us sick, to consent to another clinical trial in hopes that we would get a better quality of life. She would tell us to never give up because we don’t know what promising medical breakthroughs were right around the corner. I have never figured out if my mother still believes there is a way to save us out there, but I know it is not easy for her to know that two of their four children will likely die from this disease.

            My mom is the reason I have allowed my beliefs to take on a new form. Without her I would still be beating myself up over the fact that this wasn’t supposed to happen to me. Once I accepted the fact that this happened to me, I was able to stumble upon some newfound growth that has led me to my current beliefs. I came to the realization that no one in the world is able to tell you what is going to happen to you today, tomorrow or the next day. Honestly, if my family had listened to everything the doctors and other healthcare professionals have told us then I would have never been able to walk across the stage at my high school graduation. My little brother, Tyler, would have died before his fifth birthday. I would not be living my days out with a higher purpose to ensure that no teenager, child or adult will ever have to listen to the doctor say, “I am sorry, there is no treatment, no magic pill, no surgery, no chance of remission, and worst of all no cure.”

Saturday, September 16, 2017

I Am From Poetry

These last several months have been pretty earth-shattering in my world, to say the least. I have so many words I want to say to the world but when I come to sit down to write I realize I have none. Life has definitely left me speechless but today I was finally able to let all the stress and worries leave me and just write. If I did anything successful today it would be that, so here it is...

I am from a life where nurses become your best friends and the whirl of IV pumps lull you to sleep.
From a series of never-ending hours in hospital waiting rooms and cold, sterile hallways.

I am from brown eyes that haven't seen far more heartbreak than one could imagine and tear-stained pillows that have received soul-crushing news.

I am from a scared teenage girl whose heart rises each morning in search of a better day.

I am from a belief in which I know I will never fight alone.
From a place where we put all our faith in the Big Man upstairs, from the taste of victory upon finding joy amidst the pain and from a life where laughter cures all.

I am from a kick-ass support team where hope is the only thing that matters and a family who isn't going down without a fight thanks to a Mom who never gives up.

I am from the moments in which I realize the most amazing gift of all is this thing we call life.