Tuesday, May 3, 2011

Come together, right now!

This has been quite the couple of months. I’ve been building. I’ve been walking. I’ve been working with friends to create a website…to reach out to schools to hopefully get those schools and the students engaged in the cause and the walk…collaborating to design a logo and a business card and thinking about a slogan. I’ve been getting in touch with whomever I’m supposed to get in touch with to fill out the paperwork I’m supposed to fill out. I’m contacting the people, the corporations, the sponsors, the talent, anyone I can to raise awareness for a cause that needs awareness. I’ve had some amazing help through friends and family, and then there has been the other side that has also been equally educational but not as positive…I’ll call it the Darkside. The side that is strangely familiar. The side that reminds me of when after I had my second surgery and was told that my best option was a third surgery, maybe a fourth surgery, but there was no guarantee that any of these surgeries would cure or even help me, and that it was important that I know that with each surgery there was a risk I could actually be weaker and more impaired. I remember asking if there was anything else that may be out there in the world that might be useful or effective for me. Anything? My doctor said that he was sad to say it, but “No, there wasn’t”. This didn’t seem like an option. Moving on…from him seemed like the best option. “I’m not taking NO for an answer seemed like the only option”. I left that negative optionless room on that day that my surgeon and I had that very bubble-bursting conversation (at least that’s how I saw it), and started to research for another option…any other option other than the one I was being given. After much looking, and much help from many of the same people who are helping me put together the Walking Miles 4 Brain Matters event I’m planning now, we found what I felt was a better choice for me. This is when we found Proton Radiation Therapy. My most recent math problem is slightly different, but the arithmetic is the same. As I’m trying to help raise awareness of brain tumors, I’ve come up against one of the same problems I was dealing with at the time I was dealing with my own brain tumor. I recently was calling to get a school on-board for Walking Miles 4 Brain Matters. The call was to one of the first schools we’re planning to stop at in October. The person I spoke to at this one particular school gave me two reasons why they would not be able to commit to participating to our event. Reason number one in the room of “sorry we can’t help you now” was that it was too soon to think about an event that was in October, but that if I called back after the first week in September, just after school started (only three weeks from the day I was to begin walking) that maybe they could help me out at that time. This was not bubbling with enthusiasm nor helpfulness. It also didn’t make sense. I spent many years at school, my daughters went to school, are still in school, generally everything that is done at schools is done way in advance. The rest of this conversation was deflating for additional reasons which I won’t go into, but I suppose the most deflating was the unbelievable lack of support considering that Brain Matters (our non-profit), is willing to do so much of the work, and really only needs the school onboard for promoting the walk within the school. We would supply attention-drawing flyers to the students, the website includes the permission slips and the registration forms, we would do the advertising on the outside etc. Reason number two in the world of “sorry, we can’t help you now”, was that as I was talking to this school official they told me they couldn’t help me because they were too busy promoting Relay for Life at the moment, and could not divert their attention or the student’s attention from that project, to get them involved in anything else. I am familiar with Relay for Life and believe it’s a great cause-it helps raise money for cancer and incorporates cancer survivors into that fundraising-this by all means is a cousin of Brain Matters. I was not looking to get in the way of this cause. My own kids have participated in this cause in the past, and I was fairly sure that the event didn’t take place until the end of June. But time can fly by when you’re having fun, so I asked the person I was talking to when the event was supposed to take place. He told me it was happening at the end of June. He also told me the school had been doing the event for 15 years, which made me think that while I do know Relay for Life does take planning, so much of it at this point has been put into place because it has been going on for that length of time. I said, “today is April 26th (the day we were actually speaking to each other), that’s almost two months away from now, and you can’t talk to me because you feel too busy with regard to an event that is two months away, that makes me concerned about how much you will be able to do when we’re talking to each other again at the beginning of September with only three weeks until the beginning of my walking event. I realize my walk is in October, but all I’m looking for is to know that the school is onboard, and that we can work together to make this happen…waiting until the kids come back at the beginning of September to decide whether or not you will want to be involved, I believe will be too late to get the message out with only three weeks preparation before a decision is made.” I was surprised by this conversation for a few reasons, some obvious, some less than obvious. Before my friends and I thought of the idea of stopping at schools along the route between my hometown and the last town in Boston, we had put out a few “feelers” to schools about our idea. The schools we had spoken to thought the idea was terrific and were eager to help in any way they could. They thought that being able to reach out to kids and make them aware of brain tumors was great, and having a long walking event that stopped at schools would be a good way to bring publicity to the cause. It was because of this eagerness that Walking Miles 4 Brain Matters was created. We believed that their eagerness would be matched by other schools we contacted, and if not eagerness, then at least politeness and if not that, then good will. I find myself wondering if the reason for the difference in enthusiasm is because the schools we talked to before we “molded” the event were private schools, not public schools? I went to public schools my whole life, I participated in UNICEF, participated in other charitable fundraisers, why was this particular school, this particular public school so…for lack of a better word “non-participatory”? Well, when I hung up after that call I thought to myself, “I’m not taking NO for an answer”, not yet…there must be more options, more people to talk to”. It’s possible that if I had accepted the opinion of my doctor back a few years ago, I wouldn’t be here today. I wouldn’t be here complaining about what I don’t feel is not quite right. It may just be that not every school I call this year will be the right school…not for this year anyway. Many of the schools we have called have already shown a significantly different reception than this one school. This specific school I’ve been talking about happens to be particularly meaningful to me. If it doesn’t work out, then I will have to accept it, but certainly not without coming through the windows, if they’re closing the doors. We’ve got to come together right now. Don’t you think?


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