Sunday, April 24, 2016

shaving for the St Baldrick's Foundation

On May 7th, I will be shaving my head to raise money for the St Baldrick’s Foundation; an organization which helps raise money to combat pediatric cancer. I was the target age that St Baldrick's works with when a diagnosis of pediatric cancer was a legitimate concern for me. 

As you know, I’ve suffered from severe migraines all my life. I was in 5th grade when I first went to a pediatric neurologist because my usual doctor was afraid that I was developing a brain tumor or other serious neurological condition. I didn't know how serious the concern was at the time. Mom, however, still talks about how as we were walking into the hospital, she saw a kid, about my age, coming towards us with their head bald from chemo. That sucker punched her, knowing that child could soon be me. 

I was never found to have a cancer, and after I was in my late teens, my doctors stopped screening as frequently. 

This August will mark 15 years of my having the same intractable migraine, but it isn’t cancer. When I shave my head on May 7, my hair will grow back, and I'll still have migraine. However, I hope this will not only be a way to show acknowledgment for my own migraines, but more importantly, recognition of how very different, and difficult, life must be for the kids who are dealing with what I avoided. 

I’m asking you help by sponsoring me, so that kids who are dealing with pediatric cancer can continue to get the support St Baldrick’s brings. 

Friday, April 22, 2016

showing true

I haven't posted in ages because, even as my migraines have been become slightly less 100% front and center in my mind, I've started having episodes of confusion. My brain will stop wanting to be able to make the connections, or else I can't find the words for what I can be thinking inside my head. I've always thought in meaning, not words, sounds, or reading type methods, so I can't rely on that much to help. It's incredibly frustrating that I can get into a great discussion with somebody, and then even halfway through my own sentence, I'll completely lose the thread. It's just... gone ...

For that reason, I'e been finding it incredibly difficult, frustrating, and frankly embarrassing to try and edit the novel I wrote in 'o9 or write journal/blog entries. I didn't want to have the break off of thought be so obvious and have whatever I was trying to express cut short. I always prided myself on the quality of my writing, especially back in school when there was more of a continued audience for it.

However, it was pointed out to me yesterday that here, this blog, I wanted to show and discuss migraines as they affected my life and just show a snapshot of what it is like for me. And the abrupt loss of train of thought actually is a very important aspect of what has been occurring recently. I don't need to try and gloss over or not let that show as much as any other part of my life.

Therefore, in future entries, which I am going to try and be posting much more frequently, there may be times when, mid-sentence, the post will end. That's because that's what was written, and that's all that needs to be posted. I don't want to hide my confusional migraines anymore, because I'm aware that I am not the only one going through situations like this. While mine might be a unique combination, letting it be seen and read by other migraine sufferers who are dealing with the same, or similar problems, don't need to think that they're having an abnormal, one-off experience.

I live by the phrase I found in a book years ago; Quantum in me fuit, which roughly translates to "I did the best I could."
That's what I want to be able to share - my best, whatever that may end up looking like at that moment.