Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Benefit Concert Speeches: 2013

Written by Katie. Posted in Chronic Illness, Ehlers-Danlos Awareness, Family, Favorites, Fundraisers, Invisible Illness, Memorable Experiences, POTS Awareness, Writing

For documentation sake, the following are Allie and my speeches from the Life as a Zebra Foundation’s second annual, “An Evening With Chris Trapper and opener, Joshua Davis Trio, to Benefit Invisible Illness Research” held at the Kellogg Hotel and Conference Center on April 13, 2013.

Katie’s Speech

Chris Trapper once told me, “Perspective is a party guest you didn’t necessarily invite, but you desperately needed to talk to.”

I have thought a lot about this.  His words stuck with me after Allie became sick. After I became sick.  They stuck with me after I was diagnosed…And as I started to deal with the fact that I now had two chronic, invisible illnesses that I needed to learn to manage for the rest of my life.  They are still always in the back of my mind as I strive to live each day with a life full of purpose, love, and fulfillment. 

Before Allie and I became sick, I lived a great life.  I have always had an amazing support system, I traveled the country competing in gymnastics, I got married, taught full time, and lived each day in a carefree manner…I really felt like I had the world in the palm of my hand.  

Then, Allie became sick. 

Lesson in Perspective Number 1.

This was and still is what I consider to be the hardest time in my 31 years.  I felt helpless as I watched my baby sister and best friend grow sicker and sicker from afar.  At one point, it seemed likely that we were going to lose her.  I screamed.  I cried.  I prayed for her to keep fighting.  I constantly negotiated with the man upstairs…

When the doctors told my family that we would need to say our goodbyes, Allie pulled through and showed those doctors the survivor she is. 

Life changed for me after that.  With the uncertainty of Allie’s condition, I, always the “fixer,” needed to figure out what we could do to help Allie, to help other PAN Vasculitis patients, and to make some kind of dent in the world of medical research.  I watched her go days without a diagnosis.  I watched as we almost lost her.  I felt the need to do something…anything…but it was the “what” I was unsure about.  

Little did I know that a year later, I would also become extremely sick with my own two chronic illnesses; Ehlers-Danlos Syndrome and Dysautonomia, or POTS. 

Lesson in Perspective Number 2.

Ehlers-Danlos Syndrome, a genetic, connective tissue disease, and Dysautonomia, a disease of the Autonomic Nervous System, are known as two of many, hidden or invisible illnesses.  I don’t like to usually focus on my diseases, but it is important to Allie and me to get the word out about the need for sensitivity on the issue of invisible illnesses.  I urge everyone, including myself, to think twice the next time we are quick to judge someone.  Take it from Allie and me, you cannot tell what a person is going through or dealing with just by looking at them.  I cannot tell you the amount of confused, surprised, or even angry looks I have received on the days when I have been forced to use my handicap sticker or wheelchair. I realize that I cannot expect people to just know, if I don’t try to explain myself, and what I go through.  This is where the awareness comes into play.  

I am a teacher.  I returned to teaching half-time after having to take a year off. I shower every morning before I go to school. I then have to sit or lie down to allow the blood that has pooled in my legs and stomach to return to my brain, so that I do not become sick, and I can go to work.  I go to school and it is there that I have mastered the art of alternating sitting and standing so I do not pass out. I eat a lot of salt to keep my blood pressure up and I drink three liters of water everyday to increase my blood volume.  I rehab three-four times a week with my wonderful physical therapist to keep my muscles strong so my body does not come unglued because of my defective collagen.  I take medications everyday in order to slow my heart rate down and to raise my blood pressure.  I sleep two hours every afternoon so I can function the rest of the day.  I receive close to 100 shots every month in order to better stabilize my joints.  I maintain my health with many specialists all over the Midwest.

 As I started to get a handle on what life meant with living with these little known, chronic illnesses, life changed for me.  And it changed big.

Reflection, gratitude, courage, and yes, perspective became the overarching themes for my life.  Everything I do now takes careful thought and planning.  I no longer have the luxury of just taking on a day without first evaluating all of the pros and cons of what would happen if I crashed and became sick.  At first this was frustrating and a hard pill to swallow.  But over time, as this new life became my reality, I realized I was lucky.  It may sound corny, but it’s the truth.  I started to believe with my whole heart and soul that I was blessed with these two diseases for a reason. 

Lesson on Perspective Number 3.

Chronic illness forces me to evaluate the priorities in my life.  It forces me to think about and act on what I am passionate about.  I have learned more about myself in these last three years, than I ever thought was possible.  I have developed an empathy that I never had before Allie and I became sick.  Each day, I ask myself, where I want to focus the energy I do have. I have no time for drama. I have learned to take in and appreciate the small moments because those are the moments that really do matter.  I have learned a lot about relationships, and the importance of giving back and paying kindness forward.  I have learned how to advocate and stand up for myself, because I now know that if I don’t do it, no one will.  I have learned the extreme importance of laughing and hanging on to a sense of humor. I can honestly stand here and say that EDS and POTS have created a life for me that is filled with joy, purpose, fulfillment, and yes, perspective.  

I would be remiss if I didn’t say that a lot of this is because of my incredible support system of family and friends. If I do fall into one of my “why me’s,” I have family members right there asking, “why not you?” I have a Mom, a husband, and friends who will push me in my wheelchair, and when I cry because I am mad that I have to ride in it, they remind me that I am lucky to have it because it gives me the freedom to do the things that I need to do.   I have all of you.  I have the most loving and supportive husband.  I have music.  And inspirational examples all around me.  I have my faith. I have a voice and I have learned how to use it in order to advocate for myself and for others.   I have found my courage and I have realized that I am a survivor.  I still have my good health.  In fact, I still have my great health.  My organs work.  My brain is sharp.  I can see and hear.  I am alive and well and breathing. 

I also believe that I was blessed with these diseases to help others try and see things just a little bit differently. To become a reminder that you never know what someone is going through just by looking at them. To raise awareness and funds for these often overlooked diseases that have no cure through our foundation. 

Chris Trapper was right: “Perspective is a party guest you didn’t necessarily invite, but you desperately needed to talk to.”

Perspective hit me hard when sickness crept into my life, both as the sick and as the caretaker.  No, I did not invite sickness into my life, but it came knocking anyways.  My friends, in life we don’t have a choice.  Yes, there are always things we cannot control.  But I have learned along the way that life IS what we make it.  Perspective is something we always can search for; and sometimes if we’re lucky, it finds us.  I am grateful everyday that perspective barged in and sat me down when it did. My life is now full of so many blessings because of it.

Allie’s Speech

“Health is a state of physical, mental, and social well-being, not merely the absence of disease.” This is a quote from the World Health Organization, which I learned on my very first day of occupational therapy school last summer. I really love that definition, as stuffy as it may sound. I think it perfectly encompasses what Katie and I have been trying to convey for the past couple of years: you can have both your health, and an illness, at the very same time.

I have Polyarteritis Nodosa Vasculitis, also known as PAN. PAN is an autoimmune disease that attacks medium-sized blood vessels, interfering with blood flow and damaging organs. It can essentially wreak havoc on any part of the body, and it is often fatal when left untreated. Obviously I am one of the lucky ones who began receiving treatment in the knick of time. Though I am alive and appear to be well tonight, getting to this point has been a long and challenging road.

My journey with PAN began back in 2008, when I was a junior at the University of Maryland and a full-ride scholarship gymnast for the Terps. What began one day as mysterious aches and pains quickly grew into regular fevers and persistent nausea. I was constantly exhausted– to the point of having to take rest breaks on my short walks to class. I was still trying to do gymnastics and train for competition season, but as I struggled to do even the most basic of skills, it was clear to me that something was really wrong.

I saw the University of Maryland team physician, who simply told me I had a virus and I would get better soon. Though part of me knew that wasn’t the case, I accepted her diagnosis with optimism and hope, and I continued to go through the motions of each day. For months the fevers continued, the fatigue was unmanageable, and my joints continuously ached. I saw the team doctor several more times over the course of these months, and each time I was told that I had a virus and a bad case of homesickness—there was nothing she could do to help me. I was frustrated, lost, and I felt like no one was taking me seriously.

Then, like any good story goes, it was my mother who came to the rescue. After dozens of phone calls to my coaches, she finally demanded that mountains be moved. I was sick, and I needed medical attention. That same December night, my athletic trainer got me up off the bathroom floor and drove me to the University of Maryland Medical Center in Baltimore. I never expected to stay there for the next 48 days.

I wish I could say that everything got better when I was admitted to the hospital, but that simply isn’t true. In fact, things got much worse. I had constant, excruciating stomach pain. I could no longer keep food down. I quickly lost 40 pounds. I had MRIs, EKGs, CT scans, x-rays, endoscopies, colonoscopies, ultrasounds, a spinal tap, a bone marrow biopsy, blood transfusions, a feeding tube, and a PICC line. All of the superficial veins in my arms had collapsed from daily blood draws. I was on IV pain and nausea medication around the clock. There were weeks at a time when I was too sick to move from my hospital bed. Dozens of specialists were in and out of my room, ordering tests and chatting with my parents, yet none of them could explain my rapidly deteriorating condition.

Everything culminated in the middle of the night on Christmas of 2008, when I had two severe, back-to-back seizures. Though I don’t remember the events surrounding that night, my family can recall them vividly. I spent the next few days in the ICU, and early brain scans indicated that I had suffered serious brain damage. When my parents asked the doctors if I was going to make it, they simply replied, “I don’t know.” They were told to prepare for the worst.

Enter Dr. Ferentz, an attending physician who happened to be working over Christmas so that his non-Jewish colleagues could be at home with their families for the holiday. Perhaps it is a coincidence that he was my doctor during this critical time, but I prefer to think of it as fate. It is this doctor who had suggested a kidney biopsy earlier in my hospital stay, and when at my sickest, it is this doctor who then demanded that this biopsy be done. True to his instincts, it was this kidney biopsy that finally pinpointed my diagnosis of PAN. Once again, mountains had been moved.

Finally, with a diagnosis and an established plan of attack, I began intensive rounds of chemotherapy to suppress my overactive immune system, and massive doses of prednisone to reduce the inflammation of my blood vessels. My condition stabilized enough for me to come home to Lansing with my parents, where I continued recovering and rebuilding my strength. While it might seem like my hospital stay would be the toughest part of my journey, it was actually this time at home that truly tested my emotional and physical strength.

Imagine being 20 years old and returning to your parents’ house after being away at college for two years. Imagine being on 10 different medications at once, and the range of negative side effects that go along with that. Imagine having your driver’s license restricted because of your history of seizures. Imagine being forced to quit the sport you have lived and breathed for the past 18 years. Imagine having all of your best friends live 600 miles away, competing for the team that you love, wearing the uniform you have worked your whole life for. Imagine having dreams of graduating college and going to graduate school, but not knowing if you will ever feel well enough to return to school. Imagine being driven to the hospital several times per week to have chemotherapy infused in the semi-permanent IV line in your arm. Imagine feeling like you no longer recognize your body. Imagine the nausea, the mood swings, the hair loss, the weight fluctuations, the self-consciousness, the depression, the loss of independence. This was my reality during that period of recovery.

Now imagine an incredible support system of family and friends. Imagine having parents care so much about you that they will miss months of work to take care of you, to drive you to your appointments, to rub your leg when you are in pain, to buy you donuts and chocolate milk whenever you ask for them (all the while knowing you won’t keep them down for more than 15 minutes). Imagine a sister like Katie, who can transform the worst of situations into a dance party and a comedy session at the drop of a dime. Imagine a team of girls and coaches who dedicate their competitions to you, and who welcome you back to their team despite knowing you will never compete again. Imagine an overwhelming outpouring of love and support from friends, acquaintances, and strangers around the country. Imagine having the kindest of doctors; one who takes the time to get to know you, listen to you, and treat you like a real person. Imagine having goals, dreams, and aspirations that you refuse to abandon. Imagine how great it feels to get stronger, better, fitter. This is what got me through that difficult period of recovery.

After three long years of fighting like hell, here I am today, exactly 14 months into remission from PAN. I will always have the disease. I will take medication for the rest of my life. My symptoms can reappear at any moment, any day, anywhere. My blood vessels have been damaged. I am at risk for an aneurism. My kidneys are scarred. My skin is scarred.

The funny thing is, that despite these medical problems, I still consider myself to be healthy. It is my health that has allowed me to graduate from college and to begin a rigorous master’s program. It is my health that has allowed me to live independently for the last several years. It is my health that has allowed me to travel to Indonesia and to truly soak in that experience of a lifetime. It is my health that has made it possible for me to spend time with friends, to go to dinner, to dance at concerts, to help create the Life as a Zebra Foundation, and to help plan this charity event. It is my health that allowed me to train for, and to proudly complete my first half marathon last month.

Let me remind you, “Health is a state of well-being, not merely the absence of disease.”

Medical conditions are an inevitable part of life, and much of the time we cannot control what conditions come our way. But Katie and I are firm believers in taking charge of the things that you CAN control in life, and making the most of the hand you’ve been dealt.

If I can offer you all any final words of wisdom, it would be to always strive for this state of well-being known as health. Laugh every day. Be a good friend. Exercise, eat well, and make good lifestyle choices. Take care of, and appreciate your body—it is the only one you have. Surround yourself with people who make you happy. Find a job that you are passionate about. Stay away from stress. Let people be there for you, comfort you, and take care of you when you need them. Listen to your body. Advocate for yourself. Set goals and work toward them. And last but not least, never, ever give up.

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