I will hold on hope.

I realize something that maybe I’ve been avoiding for a while – my positive outlook on life has changed dramatically in the past few months, it’s been swallowed up by depression and hopelessness. I’ve ceased to participate in my life. When did that happen? I think it’s been a slow progression. I don’t have good days and bad days really, there are the highs and lows but mostly it’s just emptiness, eternal boredom, nothingness, accompanied by never ending physical pain.

What a waste of a life. That’s not what I want my existence to amount to – having my spirit broken by my worst enemy; pain. How did I let myself become this shell of a person? I’ve stopped being excited about things, stopped setting goals and having hopes. When I get an email from someone in pain or with an illness, asking me how I stay positive, I feel like a fraud – how can I give advice to other people that I can’t seem to follow on my own? I think I’ve started using my illness as an excuse, and it is, for a lot of things, but it doesn’t mean that I can’t try, and it doesn’t mean that there’s no room for anything else, anything good, in my life too.

I’m afraid to fail, and, I’m afraid of discovering just what kinds of things my body prevents me from doing. But that’s what I’ve realized – my fears keep me from doing much more than my body or pain ever would. That’s not okay. So, I’m going to start correcting that little voice in my head that tells me that I can’t do things and that I shouldn’t even bother trying as soon as I hear it and replace it with one that tells me it’ll be worth it to try, no matter the outcome. My own form of cognitive behavioral therapy. It’s been so long since I’ve truly worked hard at something and felt the pride of achieving it. I need to remind myself what that feels like. 

I wanted this blog to be as honest as possible, but I also wanted it to be somewhat positive, maybe even inspiring. So, time to get at it!

Hope By Jan Tik

I will hold on hope, and I won’t let you choke,
On the noose around your neck.
I’ll find strength in pain,
And I will change my ways.
I’ll know my name as it’s called again.

Mumford and Sons – The Cave

Paper Hearts & Concrete Angels

I want to take the opportunity to dedicate this blog post to the important objective of raising awareness about pediatric cancer – two words that by all means, should never have to be strung together, two words that all too often are.

This heartbreaking disease that causes so much devastation for so many families recently garnered a new face for me. One of a little girl, unimaginably brave, unwaveringly strong and eternally beautiful. Her name was Donna, and she was diagnosed with papillary meningioma – an aggressive brain tumor – at only 20 months old.

Wonder

More on her story a few paragraphs down, I’ll first write a bit about pediatric cancer and some of it’s endless impact.

According to cancer.gov’s fact-sheet in the United States alone approximately 10,400 children under age 15 were diagnosed with cancer in 2007. Of those about 1,545 children will die from the disease. That’s 1,545 too many. This makes cancer the leading cause of death by disease among U.S. children 1 to 14 years of age, though, cancer is still a relatively rare diagnosis among those in this age group. On average, 1 to 2 children develop the disease each year for every 10,000 children in the United States.

Let’s step out of the statistics and think about what those numbers actually mean. They mean that that many children, that many families and that many lives are being forever changed by this disease. They mean huge financial burdens to people already going through something no parent should ever have to face in regards to their child. They mean pain, struggle, hours spent in treatments, travel. For many that beat the disease the fight is never truly over. They face the dim reality of possible relapse, debt, the medical consequences of heavy toxic treatments.

Research on pediatric cancer is heavily underfunded. The funding for pediatric cancer clinical trials is currently $26.4 million. To compare the National Cancer Institute funding for AIDS research was $254 million in 2006 and for breast cancer it topped $584 million. Visit this link to view the ways that you can contribute to a cure be it fundraising, donations or volunteering.

I was introduced to Donna’s story by Donna’s Cancer Story, a blog created by her mom detailing Donna’s 31 months of treatment. I started reading and became instantly glued to the screen. I sat, stood, adjusted and readjusted my uncomfortable position for 2 and a half hours, start to finish, smiling at the light and beauty of an incredible little girl, crying, and asking the air why someone so young and innocent should have to fight so hard for her life. I printed off her story to share with everyone I knew because I couldn’t imagine not passing on the legacy of this little girl, her amazing grit, and her loving family, it’s a story everyone should read. It has inspired me endlessly and touched me deeply.

Through Donna came an amazing contribution to the world by those who loved her and those who were touched by her life and story. Donna’s Good Things is a mission started by her parents aiming to “Provide joyful opportunities for children facing adversity, be it economic, familial, social, or health related; and encourage Your Good Things by providing an online community where folks can share in words and photos something they’ve done influenced by Donna’s inspiration.” Donna’s Good Things has undoubtedly provided priceless smiles and warm hearts to those who need them the most and through her moved others from all over to take action and make change. Click here to see how you can help.

From the bottom of my heart I want to personally thank Donna, for reminding me to stop and see the beauty that life holds, even when it seems hidden. And I want to thank Mary Tyler Mom for sharing her amazing words with the world and helping me ‘choose hope’. Another quick thanks to From the Bungalow’s freshly pressed “Blissfully Bald” post for directing me to Donna’s story!

I’ve included this quote already before – a personal favorite of mine – but it seems very fitting for this post.

“The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love and to be greater than our suffering.” -Ben Okri