If you are looking for a post with a consistent theme, look elsewhere because this isn’t going to be that…
I have an important meeting at the Social Security department on August 28. It is amazing how time has slowed down since that date was set.
Summer is good. But summer is hard for someone with headaches/vision/nerve/fillinwhateveryouwantiprobablyhaveit .
My 18 year old son graduated from an urban, diverse Christian private school. With my older kids, it was a party because of the grades and such. With my 18 year old, it was a party because of what he has learned - about himself, about his beliefs, about making a difference, about being aware of the people around you and knowing that they have needs. He has authored many songs and poetry. He wrote a poem for my dad and read it to him all in his room at Hospice where we believed he had less than 24 hours until God called him home. 12 hours after his grandson read him the poem, he did pass into glory. The title of the poem, “I’ll see you on the other side.”
He and I have talked numerous times about how his music, at the start of 11th grade was sort of like my golf game when I was that age. I loved it but I wasn’t sure if I was good enough to make it more than a hobby.
I wasn’t. He has to make that same decision with his music - does it remain just a hobby or does it turn into something more? Hearing him talk to the Director of Admissions at the college he will be starting at next month, I was frankly overwhelmed at how far he has come.
Okay, proud dad moment is over.
Moving on - have any of you seen a link between the severity of your headache and how “out of normal” the heat and humidity was. Two weeks ago, we had a stretch of temperatures in the 90s and heat index levels approaching 110 degrees. We have air in our old farmhouse but for about a week after that, temperatures and humidity levels were back to normal and on the normal 1 to 10 scale, I would say I was running about 2 PTs higher. Anyone experience something like that or am I alone among the alone?
Did you know that when your “assistant” asks you to prepare a written documentation of all of the doctors you’ve seen, what they have said, what they did and the results, that’s a hard thing to do.
And amazingly long. As in 28 pages and just over 15,200 words.
And I learned a couple of things: 1) I will never pay more in health insurance premiums than what all this would have cost if I didn’t have insurance.
Secondly, but more importantly, I learned something about all of us…
WE ARE ALL AMAZING PEOPLE!
Every single one of us is.
This “thing” is rare, hard to treat, hard to see
and yet here we are.
This thing pulls down your attitudes - but you’re here - cheering each other on.
And I could go on and on and on - but I won’t.
How do I know you are amazing since I have actually never met anyone in person who has an AVM?
You’re here. You’re here reading this rambling note.
You’re in this group - trying to connect, to find information, to not feel so alone.
And the very fact that you show up to this thing called life means you are amazing.
If you asked me to say 12 months ago, describe how you feel, not how you feel in terms of symptoms, but how you feel deep down inside.
I would say that I felt like the ordinary soldiers at the end of the movie, “Saving Private Ryan.” It’s quiet, the fighting and noise and such is done and you limp out and start heading to base camp. You won, but it was a huge toll and that loss shows up on your face and the way you carry yourself.
But when I wrote out all of the crap that I’ve been through, and then I remember what the dean of students at my 18 year old’s high school said after I told him the whole story.
“And yet, here you stand and if that isn’t a testimony, I don’t know what it.”
So I would say I feel more like a soldier who is hopefully landing at a military hospital and comes limping off the airplane walking more like an 80-year-old and less like a 20-year-old. We won, he’s walking under his own power, but it came at a big cost.
I read an article the other day that said studies at a prestigious university (I forget who) seem to show that learning to play a musical instrument can help the brain heal. They were talking more in terms of dementia and Alzheimer’s but I took piano lessons until 9th grade, so I think I will try it once the only ones in the house are the dogs (and they can’t tell how bad it is.)
To quote William Shakespeare, “and therein lies the rub.” How can you learn to play an instrument without making a lot of noise? So will it make the ears and the headache worse while doing it but be good in the long run?
And with that, I end the ramblings for the moment.
Thank you for creating a source and a place for us to talk, ramble, rage, laugh, cry and any other emotion you can think of.