Monday, November 6, 2017
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
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.
Monday, February 20, 2017
"Many places I have been, many sorrows I have seen. But I don't regret, nor will I forget all who took the road with me." - Billy Boyd
When I was eleven my brother was diagnosed with Mitochondrial Disease. A degenerative, genetic condition that has no treatment. When I was fourteen I was diagnosed with a disease that affects less than 45,000 people worldwide. When I was fifteen I was diagnosed with the same disease that is claiming my younger brother's life.
Originally, I was lost and scared, but I found my sisterhood among a group of mostly girls connected through social media. We all have different diagnoses, different stages of treatment (If there are any for our specific diagnosis), different locations across the world, but the one thing share is the sense of mutual understanding. There is nothing more special than being present with someone who knows what's wrong before you open your mouth. Even though, I have never met many of these girls in person I have shared more of my fears and worries with them than I have shared with my own parents. They are more than my online friends they are my family.
I still remember the nights following my return from traveling the number one specialist for my disease. After two surgeries and several procedures, the doctors walked into my hospital room and told my parents he was sorry but there's not much of anything they can do. He told my parents I would be lucky if I ever got better. In fact, I would probably only get worse. My parents didn't cry and I didn't cry. We were all numb and exhausted. I didn't say a word on the eight-hour drive home, but once we got home I called my best friend, Christine from our close knit group and cried to her until we both fell asleep on the phone together. I was devastated and angry but not for myself. I was devastated for my parents who now had to worry about not just one of their children loosing this uphill battle, but two of them.
Christine and all of the other girls have helped me through my darkest moments and cheering me through my greatest accomplishments. I believe that's the most important part of being in a sisterhood: Not only being there when life couldn't be any better but also being there in the darkest of times. Together we cry, we laugh, we pray, we celebrate, we hope, and we dream. We are all deep in the trenches fighting to stay alive, we are scared and suffering yet we still make time to lift each other up. We celebrate the success of the girl who's cancer went into remission while we pray for a miracle of our own. It's about being humble and not make everything about yourself. So many girls have come and gone since I joined this "sisterhood" and I am privileged to be one of the originals still breathing, still living and still fighting. Our lives have been anything but perfect but we have made something beautiful out of the imperfections.
Tuesday, January 3, 2017
While boarding a flight home from Iowa today with my siblings a little girl who couldn't have been much older than four was stopped in front of my seat. She stared at me for a second and very loudly asked her mother "Why does she have to wear that?" [For those who don't know I am immunocompromised and I have to be careful (especially during cold and flu season) to limit the contact I have with germs because my body simply can't fight off the simplest of illnesses. So I often have to wear a hospital mask in public to filter out the germs in the air I breathe. For me getting sick could very much mean a several day hospital stay. Plus I just got out of the hospital less than two months ago, so I'd rather not go back anytime soon.]
The mother was obviously mortified as most would be, but she was silent when (most parents I have met very quickly shut their child down from asking such questions.) I chose to take the opportunity to speak. Using an age-appropriate description I explained I have a disease that makes it hard for my body to fight off the germs I come in contact with so I have to be super careful and do everything I can to make sure I don't get sick.
The little girl was satisfied with the answer, the mother was relieved the question didn't make me upset and told the little girl that's exactly why we need to wash our hands often and keep our germs to yourself.
The point I am trying to make is to let your children ask questions. Don't force your child to be quiet and pretend as those your kids shouldn't know about "people like me." One day maybe your child or your grandchildren could be in my situation. People like to ignore issues simply to pretend as though those problems don't exist because they don't affect your family. Children are only curious and want to learn. Most adults wouldn't dare to ask a similar question for fear of hurting one's feelings. It's time we get comfortable with being uncomfortable.
Most of those like myself don't mind the questions because it's just another part of our everyday life. As for me and myself, I'd rather other people understand my life because it allows them to be more accepting and empathetic to my situation. It shows those people that I too am a real person just like one of them even though I've been diagnosed with multiple rare diseases. Plus the more people who know about my disease means the more awareness, education, research, and advocacy can be put together so we can be one step closer to a cure!