home away from home

I spent the last 6 days in my favorite place in the whole world, my great uncle Bill's house in wildwood crest NJ. I grew up going there just like my dad and like him I can never get enough of that house! It's 102 years old and has been in our family since 1940. Some of my favorite childhood memories are in that house and the ever changing company that inhabits it. I learned to surf on that beach 16 years ago and just yesterday I tried it again for the first time in years. I had to give up on surfing for a while after my last couple surgeries because my ankle and my balance needed serious time to recover.

I can still remember vivid parts of the day my dad taught me to surf. I was 8 or 9 and we were in wildwood with my family. We had to get up early before the life guards were on duty so my dad could be on the surfing beach without a board. He took me out on this little board that was most likely like 7 ft but at the time seemed huge. I was wearing a one piece bathing suit with blue in the middle... I remember this because the surf board had two dolphins on it and my dad kept telling me to line up the blue in the dolphins with the blue in my suit so that I wouldn't slide forward and nose dive. After learning the basics of when to paddle and several wipe outs I finally stood up on my first wave and it was one of the most glorious moments of my young life. I still look back on that memory as one of my favorites of my childhood and yesterday felt like a walk down memory lane.

My best friend Melissa and I made our way down to the beach early and paddled out and despite the lack of waves (and my lack of arm strength these days lol) I got a feel again for what it felt like to be on a board. My goal is to spend some time reconnecting with my body to improve my balance. One of the downsides of Cerebral Palsy is balance issues and I'm sure the weight I've put on from chemo doesn't help but I am optimistic that by next summer I will be back up on that board.

For years I have wanted to find the courage to get back up on that board and a few months ago the universe threw me the opportunity to find the inspiration I needed. One day at work while playing around on the internet I discovered life rolls on and their 'they will surf again' events and was moved to tears. I decided that I wanted to help in any way I could even if that meant handing out water and a few weeks ago I volunteered at my first event. I saw these amazing people, most of whom cannot walk, get on that board and I realized that I have been to afraid for too long. I've already started dancing again despite my leg and I decided that it was time to renew my love for surfing.

It was a glorious vacation filled with friends, family, love, and surprising success!

Lovelovelove!

Understanding Invisable Illness

A friend of mine from Villanova started a group on facebook to help those who face the struggles of illnesses that are not always perfectly visible to the public. We met our freshman year and bonded over the struggles that one faces with being handicapped and not looking like it on a college campus. Anyway I have been a member of this group from the beginning but had been slacking on keeping up with it for quite some time until yesterday. I had been internally struggling lately with my disease and the affects it has had on my life and physical appearance. Now I am not one to be vein and care an obscene amount about my appearance but loosing my hair was really getting to me for several reasons. I have been ridiculously lucky in the past to not loose my hair from any of my chemo treatments. I had a slight thinning of my hair before but I was fortunate to keep that part of my lifestyle intact. Recently I had noticed more and more of my hair coming out in the shower and could see my hair thinning along my hair line. I new I had to cut my hair but it was one more bit of control that I didn't want to loose. One of the things I have learned about myself over the last few years is that cancer has given me serious control issues. I hate relinquishing my control in most situations (this being one of the main reasons I now need to be sedated for my long MRI's) and I hate letting cancer get the better of one more part of my life. However, like with everything else I eventually remember that this is forever a part of me and I try to turn it into a positive in order to survive. In this situation I have decided to look at this as an excuse for a sassy summer hair cut and to enjoy every second of the new attitude that always accompanies short hair.
With this new attitude I decided to finally make my first mark on the Understanding Invisible Illness discussion board in the hopes that some someone else can see it and be inspired in the same way many of these people have inspired me.

If you know anyone who suffers from an illness of any kind and is in need of support please send them to this link where there are people from all over the world with all kinds of illnesses who just want to help.

Lovelovelove!