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By Kayla Giacin
Friday, October 19, 2012
CBTF staff and board member, Linda Wachtel, at the Campference
CBTF staff and board member, Linda Wachtel, at the Campference

This past Sunday, on October 14th, the Children’s Brain Tumor Foundation held our first ever “Campference” – connecting the medical professional and patient and family worlds that at times can feel very disconnected.  This day offered medical updates, support groups, activities, medical panels, relaxation and so much more.

From the start to the finish of the day, I got a chance to speak with many of the attendees from all the different groups participating in this day.  I noticed one similar trait throughout all of these people I spoke with.  Despite the fact that some were mothers, some were fathers, some were younger survivors, some were older survivors, and some were siblings and despite the fact that everyone in that room might have come from very a different background– the one thing I noticed is that people who have dealt with something as traumatic as having a brain in their family are extremely grateful.

At first I didn’t think twice but upon closer reflection, I thought “Why should anyone with a brain tumor be grateful?  They’re lives are drastically different than anyone could ever imagine, they have fears as children or for their children that are more than other people experience in a lifetime, every one of these people have been dealt a very difficult hand and they are here today either speaking in front of an audience or within their small group talking about how grateful they are.”  They want to give back.  For what? For being very ill? At first it didn’t make sense even though I am one of those people who want to give back!  I thought about this, what it means to me and why I give back to this community.

It’s the people.

Being in a room with other survivors and families creates this unbelievable source of comfort and warmth.  Many of the young adult survivors that I met at Camp Mak-a-Dream in Montana the first year I went, I have only seen once since then, some not even once, yet I feel closer to and more comfortable expressing my emotions to them than people I grew up with during my childhood. Some of my closest friends and relationships, I have met in the past 1 ½ year – either at HUC or the time following HUC .  My support on good days, bad days - all days - relies heavily on this community. 

It’s what I’ve learned.

Growing up, you can learn a great deal in school, from your parents, from your friends and from making observations of the outside world.  All of these things have the capability to create a very well-rounded and knowledgeable person.  However, there are some things that are difficult to learn unless you go through something as traumatic as having a brain tumor.  I think brain tumor survivors are deeply compassionate individuals who are sensitive to others that may be the underdog for any reason.  I’ve learned patience with myself and how I tackle goals that I have for myself.  While I haven’t perfected this one yet, I’ve been through enough to know what I want for myself is more important than getting everything done on a certain timeline or even in order to please others. I know the importance of happiness and I think brain tumor survivors and those who are close to them are willing to strive a lot harder to find out what makes them tick and to not give up before they get there.

It’s what I have.

Despite the fact that the vast majority of brain tumor survivors have long-term effects, side effects from treatments that we deal with on a daily basis and have that nagging fear of a recurrence or have the “what’s next…?" syndrome the truth is that we all have something that we do well.  Whether you’re a college graduate, an expert on cars or an amazing artist, we all have something that drives us and makes us appreciate life, even if it’s difficult at times.  I know that I have chronic conditions that most people don’t have to deal with, and I get frustrated when I have an off day but I can turn it around and say, “I had a brain tumor and look what I did – I’m a college graduate, I’ve traveled, I’m working at a job I love…” I think that brain tumor survivors and their families are more grateful for the things that they are able to do rather than just doing them without knowing what life could be like without them.

It’s what I don’t have.

Why would I be grateful for things that were taken away from me or I never got the chance to do?  Because of what I can do with those experiences.  I heard about CBTF in 2005 and didn’t become actively involved with them until about 2 years ago when I met Stacia at a mentor training.  I was diagnosed in 1995 and my family never knew about such wonderful services for 10 years!  I could be angry that I never had access to such support, activities and programs but I decided that I could use this to help families and children who might not know about our organization.  I can use my personal view to help somebody who might be feeling a certain way or who might be going through a tough time.

And lastly…

It helps to make sense of if all.

Why does cancer exist? Why do children get sick? Why me? These are all questions that many people with brain tumors ask and families ask it of their children.  As I heard one survivor say, "Why me? Well, why not me?" Similar to my last thought, giving back gives me a reason for why this all has happened.  It helps me to make sense of the bad times, it helps me to stay positive when I really would like to be negative.  I can see how other people’s struggles can be very dissimilar yet very similar to mine and I can help to make a difference because of what I went through.

One day at the CBTF Campference brought forth so many different emotions from so many different people regarding their life with a brain tumor.  Everyone seemed to be grateful to be in one another’s presence and eager to share their stories with each other.  In a world where it’s hard to see the positive side of things, being in this environment and community gives us a reason to be grateful and a reason to give back.

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