I don’t know Rich “Ratt” Kennedy, but I do know his brother, Jake, the other half of Kennedy Brothers PT, where I have been an off-and-on patient and on-and-off gym member at the downtown Boston outpost of Kennedy Brothers for the past eight years. Knowing Jake, I know that Ratt is a marathoner, a genius at his chosen profession, and someone who is tirelessly engaged in the community. Jake, through his all volunteer non-profit Christmas in the City looks out for the those on the economic margins of society, mostly the kids. Ratt’s charity is the Angel Fund, which over the past two decades has raised over $4 million dollars to fund research aimed at a cure for ALS, the disease that took the lives of Jake’s and Ratt’s father, and their brother Jimmy.
I don’t know about you, but if there’s one nightmare life-and-death scenario, it’s ALS.
Sure, Alzheimer’s pretty dreadful, but, from what I understand, by the time you’re really a goner with it, it’s mostly terrible for those who care for you.
No one wants terminal cancer, and the end ain’t pretty. Having lost my husband and my oldest and dearest of friends within two months of each other in 2014, I fully understand that this is a really tough way to go. But both Jim and Marie had some degree of autonomy and agency, right up until pretty much the end.
I’m embarrassed to admit that one of my last exchanges with my husband – maybe a half hour before he died – was a little squabble over whether he should be getting up to go to the hospice bathroom or pee in the jug. Jim hadn’t been on his feet for a few days, so I voted for the jug. But, damn it, Jim wanted one of his last acts on this earth to be standing up.
The last time I saw Marie, a few hours before she was put under palliative sedation, she complimented me on the scarf I was wearing, and said “you’ve had that for a long time.” Sure, I agreed, maybe ten years. No, Marie told me, longer than that. At least twenty-five years. Well, I wasn’t going to argue with her, but I thought she was wrong.
When I got home that night, I looked at a picture taken at my mother’s 65th birthday, twenty-years ago. Damned if I wasn’t wearing that scarf.
Although they both drifted in and out during their last few days, both Jim and Marie were abled to communicate, to have conversations, right up until the end. Something that ALS victims are denied. I can't tell you how precious those last conversations with Jim and Marie are to me.
But let’s face it, when most of play out the end game in our minds, we want to go like my Aunt Margaret.
Peg was 85. The night before her death, she had some of her family, including her new great-granddaughter, over for dinner. On the day of, she got up, went to Mass, went to the Star Market, went to the library, and came back home. There, she lay down on the daybed where Nanny, my grandmother, had died nearly twenty years before, pulled an afghan that my mother had made for Nanny up to her chin, closed her eyes, and never got up.
Yes, the suddenness was awful for those of us who loved her – we thought she’d make it to 97, the great old age that Nanny had attained – so it was a true shock. But, really, who doesn’t want to go out this way?
But ALS…Is there anything worse? I really can’t come up with it, if there is.
And now Ratt Kennedy has been diagnosed with ALS.
Having seen his father and brother die from ALS, having worked with so many ALS patients and their families over the years, Ratt knows what he’s in for. There will be no more marathons, and no more being able to work at the job he loves. He’s a tough guy, incredibly fit, a fighter. But there’s still no cure as yet for this ghastly disease. Hopefully – and hopefully thanks in part of all the money that Ratt has raised – a cure will be found in time for Ratt, and for all the others. Let’s wish them 100 years, and then a close-your-eyes death on the daybed like Aunt Peg’s.
But until then, the friends of Ratt are looking to raise the money to help pay for experimental treatment for him.
The GoFundMe page is Rally for Ratt.
I graze through GoFundMe all the time. Sometimes I find the causes heartbreaking, other times interesting, often over the top, occasionally absurd. I’ve thrown a couple of bucks at a few things, but that’s about it.
But now it’s someone I almost know who needs help, and the need is anything but absurd.
If you’ve got a few spare bucks lying around, this would be as good a place as any for them to land.