I'm not on hiatus, though the lack of posting might indicate otherwise. I'm laying low. I've just kind of... slowed down, on purpose, in my social life. It's a combination of a lot of things, I suppose.
Work hit a fever pitch this week with elections coming up on Tuesday, a bunch of championship games right after the other, a giant project we've got in the works for the start of January, and a series of scandals involving corrupt police officers, a sexually abusive priest, and an infestation of rats that were exterminated and died in the ceiling tiles of a local high school.
Oh, and yesterday I got pelted by wind and high waves on the banks of the Hudson River and then had two back-to-back games in the freezy, freezy cold. While still sort of wet. Why am I grown up with a job, again? Why am I not 15, huddled in the stands with my friends and then leading everyone back to my house to get in the hot tub? Mmm? Ah, yes. Paycheck. Riiight.
So I'm exactly not reclusive right now, but I'm blowing off a friend's post-marathon party right now to lay around with my laptop and work on things for wedding clients. The part where I get to work hard for my clients while wearing pajamas in a bed with three- yeah, three- snoring fuzzy companions is absolutely one of the perks of these jobs.
Brad is in the hospital again. He is in so much pain. I had a long talk with Jason last night, and all I can come up with is, "This is so unfair." Wait, I'm going to say it again: This. Is. So. Unfair. Those four hollow words don't even remotely being to describe how I really feel about the fact that this person I love so much is hurting this way.
Brad has just been beating the odds- up-down-left-right all-around-us-everywhere for so long. It feels downright ungrateful to feel bad myself when he's the one doing all the hard work. There are so many things to be grateful for, not the least of which are the extra years- heck, the extra decades- we've gotten with him. The opportunities he's stolen right out of the snapping jaws of his diagnosis- 10 years in love with his dream girl, law school, vacations, friends, an adorable nephew who pushes his wheelchair around the house even though he's barely taller than the wheels.
Gah. I am really, really angry, helpless, and bitter (but in a kind of numb, hard-to-describe way) about the pain he's in now. I can't help it.
He hasn't said anything, but we think it's painful for him to be hugged. It's dangerous, too, with some of the tubes he's got when he's hospitalized, and it more or less boils down to this: He lets me hug him- so, so gently, just the lightest pressure of palms and arms held apart in a cautious ballerina's first position- for my benefit. For my comfort, not his.
Muscular dystrophy is sometimes called "the disease that eats your heart." What they don't tell you is that it eats your loved ones' hearts, too.
Sunday, November 04, 2007
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8 comments:
Thinking of you. sending you love...
Not too make you feel worse, but if you're up to it, could you give a brief explanation of how Brad is connected to your life? I am so sorry about what you're going through, and I was just wondering if Brad is your friend, cousin, co-worker...or what the connection is....
I hope you feel my good wishes...
Brad is a friend who's like a brother to me. His mom is my mom's best friend. We grew up down the street from each other. Our parents still live there. Our families became friends when I was 5, my sister was 7, Brad was 8, his sister Kristen was 6, and their youngest brother Greg was 4.
Just to give you a sense of how long it's been, Kristen is the mother of Aiden, the baby boy being downright adorable in several vacation and baptism videos, as well the star of all the major holiday flickr slideshows.
Our families started going to the beach together every summer about 20 years ago. We went to the same church when we were kids. I don't have any aunts; his mom is the closest thing I've got. Our families spend every holiday together. Sometimes water IS thicker than blood, as it turns out. :)
Brad has muscular dystrophy, and so does his younger brother Greg. MD is a progressive disease that attacks one's neuromuscular system, slowly atrophying one's muscles until patients lose the ability to walk, etc. (This is the cause that Jerry Lewis' annual Labor Day telethon benefits.) It eventually attacks the diaphragm, affecting breathing, which is where we are in the fight. Because the heart is a muscle, MD is always fatal.
I've always looked up to Brad, in the way one looks up to a big brother, more than almost anyone else in my entire life. Greg has always been more of a baby brother to me, but I love him just as much. He's just so much a part of my family, so big a player that I guess I've been writing about him as if he needs no introduction. Sorry about that. ;)
Thanks, Angie.
Did your sister go to nursery school at Trinity UCC? I know I have a photo from nursery school that has Brad in it... he's wearing plaid pants. He must have been 4 years old. There are a bunch of other neighborhood kids in it, but I can't remember if your sister was there or not. I know Amanda S. is in the photo.....but if your sis was there, too, that would put your relationship with him even earlier. :)
oh, and is he in LGH again, or did he go to Philly this time?
He's in Philly, but not lovin' it. He's stable, just in a lot of pain. His doctor performed the first lung transplant in the country, so he's in good hands there.
I have a picture of Greg wearing those same plaid pants at the East Pete Elementary Halloween parade. He's a plaid-pants-wearing vampire. Brad is dressed as a TV. Kristen is a book. "Charlotte's Web," I think. They were really into cardboard box costumes that year. The DeBords were dressed in really impressive, handmade Ewok costumes. I am wearing my dancing poodle costume from a "ballet" recital.
Amanda went to that nursery school for two weeks or so. Then the teacher pulled my mom aside and told her that, based on Amanda's drawings, she felt that Amanda was profoundly learning disabled. She based this on a picture that she felt showed Amanda "drowning in her emotions," with all the kids ahead of her.
When my dad asked her what was up, she said she drew herself swimming at the Y in downtown Lancaster with squiggly yellow lines that represented the ducks that separated the deep end from the shallow end. She wasn't drowning. She was winning a race. It was an aerial view of the pool.
They left her in the class until Amanda started telling my mom to "cool it," a phrase she picked up from the teacher. So they put her in a different preschool after that. :)
Your comments about Edward Hesdra are off base. One should not present information like this as if it were historical fact. Census data over a 30 year period shows Hesdra and his wife's race as either mulatto or black. People who are passing for white wouldn't admit to the census taker that they were black and then say keep it a secret! Now, this is the way I see it, either they admitted their race or it was so obvious to the census taker that he or she didn't have to ask. Either way, your passing story does not hold up to the historical data.
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