Blog

Maybe it’s just because I’m not as impervious as I should be…as I need to be…as I usually am because these past few weeks I’ve been dealing with an earache, not just any earache-of course not.  If there’s anything I seem to have a knack for, it seems to be not getting the usual run of the mill physical ailments.  I get the unusual ailments.  This earache is due apparently to an infection in the bone of my ear, this earache requires weeks of antibiotics, and that’s if things go well.  I’m presently spending a good amount of energy on hoping things go well.  This has worked in the past; I will put my dice on that.  So, as I said, it may be because of my ailment, my antibiotics, and my “chi drainage” that I find myself so sad about something that has shown itself to be evident beforehand, but nonetheless feels a need to be more aired this time, than previous times.  Often if things are mentioned, they can be improved.  Here’s to hoping.  More dice please!

Here I go, and where it goes, no one knows.  I’ve been a brain tumor patient on and off for many years, I’m surviving.  I’m a survivor.  This has been mentioned oh so many times here in this blog, but it bears repeating.  Not many of us out there.  I decided a few years ago after my most recent surgery and radiation, and feeling so thankful to still be in the world, to do what I could do, to help contribute in whatever way I could to help find a cure for brain tumors.  There are many days that this is difficult because this is not just any cause, this is one by which I’m still affected. I feel the stories of the other survivors, as well as those of the families left behind.  These days are hard.  I could walk away and just appreciate my fortunate situation, but I’ve decided that while at times some of these days can be very difficult, I want to try and make a difference.  Brain Matters, Inc., the non-profit that I created to help this cause couldn’t be more personal to me.

I created Brain Matters for “Walking Miles 4 Brain Matters”, the 250 mile walk I took last October to raise awareness about the need for more funding and research for brain tumors.  I created that non-profit so that I could be sure that the funds that were raised with the help of my friends that have known me throughout the many years that I’ve dealt with the heart aching effects of this tumor, would be distributed exactly to where I wanted them to go.  I wanted to be sure that if I walked that distance and went through the effort, and had people donating the houses and hotel rooms to me to stay in, that people I knew were contributing so much of their time, that the funds were not just going to be handed over to a much larger organization that might need to use them for something other than the actual cause, just due to their size.  A larger organization has much larger overhead than a smaller one.   After the walk was complete, I thought it might make sense to join forces with larger non-profits.  Brain Matters is small, but we have big dreams, big ideas, certain connections and I thought we might be better if we could contribute some of our efforts to an organization larger than ourselves.  I thought that non-profits worked together for the cause, I thought we were all in it for the greater good.  After all, we’re talking about a serious cause, and isn’t that supposed to be what it’s about?  All for one, one for all?

What I’ve found since the walk as I’ve reached out to other larger non-profits is that they seem to be most interested in what monies, ideas and connections I can donate to them within a first time call or meeting, and then there is a subtle dismissal.  More often than not, my calls and emails are not returned.  In terms of reciprocity, when it comes to how these larger non-profits can help Brain Matters-we don’t get to feel the love.  I realize that the world of non-profit is very much about profit.  Here I am an actual spokesperson for the illness, a person with actual business experience (some would say expertise) in advertising, marketing, film production…and I’m a survivor.  I’m told someone will call back and they don’t, they don’t call back in a day, or two, or a week, or a month.  They just don’t get back.  Not since I’ve been a “cold caller”, a person making random sales calls to possible buyers have I received this kind of a letdown. The difference is, that was expected.

Sadly it seems to me that some large non-profits (definitely not all-I’ve had some amazing help from some organizations) are better able to help you out if you are no longer in the world, raising funds for those that have passed.  That’s not all of what this is supposed to be about.  I am a survivor, out here doing what I can for those that are surviving, surviving through their physical limitations, their emotional frustrations, anger and sadness, their financial devastation, and so many other things that I understand because I’ve been living it for a long time. Where’s the support?  Like I said, often if things are mentioned, they can be improved.  If someone is reading this and can improve…that would be great.