Moving!

I have decided to change blogs. Learning to Live by Defying the Odds has been imported to Wordpress. To view my new blog please visit http://livingbydefyingodds.wordpress.com/

Thank you for your support!

-Alyssa

Identity

            Recently I started reading the book Far From the Tree by Andrew Solomon. Even though my disease has been passed down in my family for four generations now, this book got me really thinking. I haven’t finished reading it yet, but it made me think about my own identity with my experiences.

            Up until this past summer, I was living my life with the belief that I wouldn’t let my disease define me- instead I had hoped to define it. After I started writing about my experiences, my outlook started to change. I saw that my disease has defined me- but in ways that I had never imagined.

            For a while, after my diagnosis, I thought that this disease could wreak havoc on my body at any moment. Before I knew I even had this disease, I had already seen what it is capable of. From time to time, I still struggle with these fearful thoughts- thankfully they are less frequent visitors of my mind now.

            As I have shared my story, Gardner’s Syndrome (GS) has become a larger part of my life. It was already something that I thought about daily, whenever I took my medicine. But it was also a common occurrence in my dreams (and it still is somewhat). For the most part it caused me a lot of anxiety at night. Often, I had dreams (well, nightmares) that I had cancer, my polyps returned, or I had desmoids. Each year, as I prepare to have my yearly screening these nightmares return. But for the most part, they happen less often now.

            As I’m thinking about GS as I am writing this,  I’ve always seen it as some kind of a gift- even when I was struggling. Though I will probably never know why I have received this gift, it is something that has taught me many things about living. Actually, it gives me a reason to live. Every day I fight GS and I will for the rest of my life. I strive to achieve as many goals as I can. In many ways I am inspired.

            So when I started reading Far From the Tree, it was really easy to relate. One part really caught my attention. It was a quote from a biologist talking about Huntington’s Disease and medical advances. Today we live in a world where there are services that can guarantee that certain genetic diseases (including Huntington’s and GS) are not passed on to our children. I know that if I was given the chance to not have GS, I wouldn’t take it. I’m sure that if I didn’t have GS, my life would be just fine. But it’s become such a big part of my life, that I couldn’t imagine my life without it.

I would like to clarify that although I see my experiences as a gift, I know that this disease is awful and I respect others’ opinions about it. It can really take over someone’s life and even take lives too soon. Everyone has a different experience with GS, and I have seen this manifested in the experiences of my relatives. My dad has had so many surgeries that I’ve lost count. My uncle died from colon cancer, and one of my aunts passed away after a long battle with desmoid tumors. I choose to see my experiences as a gift because I have seen amazing things come from this experience, and not to be cliché- but you only live once.

As I have mentioned before, I haven’t always thrived in the face of GS. For a few years, it did hold me back from living. I was fearful of it. But at some point, a transformation happened.

I know that my disease can harm my body- it already has in some respects. But from my struggles, I have found an identity. I have no idea how GS will manifest itself as I age. But I have learned many valuable lessons from it. In some ways, I am htnakful that I wasn’t genetic tested for it at an earlier age. Thankfully I made it through my childhood without experiencing other related serious ailments related to having GS, like certain types of cancers. I learned that I had GS at a time where I was already vulnerable- I was about to start high school. Through my highs and lows with GS, I have never wished that I was given a different life without it. For many years, social support for people living with GS was very hard to find. I thought that my friends wouldn’t understand my struggles. But I was completely wrong about that.

Though my life may be different because I have a rare disease, my friends have shown me that our lives aren’t so different. We all face struggles from which we gain strength and perseverance. We all experience triumphs from which we feel joy. We all experience moments of hopelessness, but in time we rediscover hope. We all experience disappointments from which new and bigger opportunities arise. We all experience grief and sorrow from which we gain compassion and empathy. Though our struggles are often different and diverse, we learn to live and overcome. 

rareACTION

My Philosophy:

            After thinking a lot about my experiences this past year and the people from the rare disease community that I have met so far, I have learned that even though we have different experiences and face different hardships (this is even true among people who have the same disease as me!), we have a lot in common. Most of us have diseases that most people have never heard of before, most struggle to find doctors who know about their disease, many can’t find social support because of how rare their disease is, and for a majority of us- our diseases are lifelong.

            A few weeks ago, I started jogging again. For Rare Disease Day and my last day of college, I made a couple of shirts to raise awareness for rare diseases and my disease, Gardner’s Syndrome. I wore my shirts when I went jogging and noticed that I caught the attention of some people, and that’s when rareACTION was born.

            The idea behind rareACTION is that anyone can be a rare disease advocate and that any type of action can lead to awareness. For my advocacy, I plan on continuing to blog and am in the process of making several shirts that I plan on wearing whenever I exercise. I also hope to encourage others to consider sharing their rare disease stories. Sharing my story has helped me accept that my disease will be a part of me for the rest of my life.

Rare Disease Facts (for these and even more facts about rare diseases, visit the Global Genes Project):

            -It is estimated that there are over 7,000 types of rare diseases.

            -In the U.S, 30 million people have a rare disease. That’s 1 out 

            of every 10 people!

-It has been estimated that 350 million people throughout the world have a rare disease.

-In the U.S a disease is rare if less than 200,000 people have it.

-About 80% of rare diseases are genetic.

-Children make up almost 50% of the people who have a rare disease. Of these children, 30% pass away before reaching their 5^th birthday.

-Of deaths that occur in the first year of life, rare diseases account for 35%.

-A large majority of rare diseases have no FDA approved drug treatment.

-About half of rare diseases don’t have a specific foundation that provides support or researches their disease. 

Interested in rareACTION?

Like I mentioned before, rareACTION is all about creating awareness for rare diseases through action. If you, or anyone that you know, are interested in participating, feel free to comment on this post. A website and Facebook page for rareACTION are currently under construction (I will post links to them when they are finished).

I hope that rareACTION is something that can take place anywhere. For people who do want to participate, feel free to post pictures, website links, and videos of what you do to create awareness on social media sites using #rareACTION, a tag for the disease you are advocating for (so like for my disease it would be #GardnerSyndrome or #HereditaryColonCancerDiseases), and #raredisease as tags. 

Friends

Lately I've been thinking a lot about the impact people have had on my life. This is to all of my friends!

Whenever I felt like I was in this alone,

you always let your presence be known.

When I feared that my disease would win,

you stood by me and told me to never give in.

You taught me to see myself as a survivor,

for not only am I living-

I’m also a thriver.

 For the fun moments that we have shared,

for all of those moments that you’ve been there.

Thank you for seeing beyond my syndrome,

always assuring me that I’m never alone.

For loving me for who I am,

For always assuring me that I can win.

Thank you for your kind thoughts, prayers,

and all the ways you have shown you care.

Your kindness has touched my soul,

without you my story would not be whole.

I can’t thank you enough

for helping me whenever times were tough.

Graduation!

It’s really hard to believe that four years have already passed by! Yesterday I ended my college journey by graduating from Western Washington University. This past week I have been able to celebrate with family and many of my close friends.

The commencement ceremony was wonderful! Noémi Ban gave a speech and it was incredible! If you ever get the opportunity to hear her speak, you should go. She is a very inspirational woman.

Throughout the ceremony, I had a lot of time to reflect on the last four years of my life. I’m very thankful that I had the opportunity to go to college and pursue my dreams. I have made friends who are like family, found a church community that I love being a part of, and I have seen myself grow as a person.

I did it! 

When I started college, I was a pretty private person. I knew that my life experiences played a role in who I was. But not that many people knew my story. After my first couple quarters of college, I wasn’t sure college was for me. But something told me to keep moving forward.

My family

As each quarter passed, I got closer to starting my major. I knew from my first week of college that I wanted to be a psychology major. I knew that I wanted to help people and over the next few years I found avenues where I could pursue this passion.

My parents got me this really
awesome psychology shirt!

There were many careers that I considered while I was in college. I went into college wanting to be a genetic counselor or a child life specialist. Over the years I changed my mind a few times. But I’m very happy with the direction that I am headed.

My siblings and I 

After graduation, I am doing an internship with the F.A.P Foundation. I am going to be helping them build social resources. I also am going to start writing for The Global Genes Project blog. I will be writing articles about being a young adult with a rare disease and making life choices (like going to college, pursing goals, relationships, etc.).

My grandparents and I

While I was sitting at commencement yesterday, a few thoughts crossed my mind. Besides wondering how it has been four years already, I thought a lot about the people I have met, how my life has changed since I started college, and the adventures I have had. As I am writing this blog, I realize that I could talk forever about college and how thankful I am for my experiences. In fact, I cannot completely express how thankful I truly am. Every person that I have met from college has had an impact on my life. I feel very blessed to have the support of many of my friends, family, and teachers in my life as I have started writing this blog.

As I sat awaiting a celebration

of the past four years or so.

I thought of the paths

that my life may go.

Four years may not seem long,

but I anxiously awaited this day

as each quarter passed by.

Then suddenly my

senior year quickly sailed by!  

As quickly as it began,

my college journey came to an end.

From knowledge came lessons

about life that I have shared.

From friends came hearts

that showed unconditional care.

From classes came inspiration

to share my story.

From sharing came strength

and appreciation for God’s glory.

Aside from new knowledge,

I had other experiences

that helped me through college.

Thanks to my church family

from my time away from home,

I know that no matter where I go,

I will never be alone.  

To my roommates, my family,

and all my new friends.

I am sad to see this special journey end.

But from endings will come new beginnings,

and time never seems to slow.

I am excited to see where all your lives go.

Thank you for these past four years.

As I have reflected back on this journey,

it’s been hard to hide the tears.

For the love that I have felt

cannot be measured.

For the memories I have,

will always be treasured.