Journalist Neil Genzlinger reflects on caring for his daughter Abigail, living with Rett syndrome, balancing caregiving with a demanding career, and the importance of planning for the future.
Transcript
My name is Neil Genzlinger. My wife, Donna, and I are the caregivers for our younger daughter, whose name is Abigail. She is 29 years old and has Rett syndrome and lives with us here in New Jersey.
I recently retired. I was a journalist at The New York Times. I retired two years ago, and now we’re both devoting most of our energy to caring for Abby.
For a number of years, I was a critic. I reviewed theater, I reviewed television, I reviewed the occasional movie, and I got sent to a lot of theater in black-box spaces in the East Village, in Greenwich Village, places that were doing sort of experimental work.
And at the time, there were a fair number of people in the theater world who were trying to get a bigger presence for people with disabilities.
And I often had the feeling that my bosses at the Times would send me to these shows because they knew I had a child with a disability, and therefore they would see a, they would get, get a press release about a new play about this disability or that disability. And they’d say, “Well, send Genzlinger, he’s got that kid with Rett syndrome, so it’s right up his alley.”
And, of course, once you enter the disability universe, quote-unquote, you quickly realize that every disability is different and that every case within your own disability, within Rett syndrome, every case of Rett syndrome is different.
If the play, on the other hand, taught me something about whatever the disability was or depicted, how a person dealt with it or overcame it, or didn’t overcome it, then that was a useful piece of theater.
Working at The New York Times, that’s a hard job. And for a lot of those years, I was actually doing two jobs. I was an editor during the day, and I was a reviewer at night, so I wasn’t home a lot.
I would go into New York, which was an hour and a half from where we live. You know, I’d go in there, work my editing shift, and then I’d go to a play or a screening or something after my editing shift because I was doing a review, and all of that caregiving fell on Donna. That really wore her down.
I think one of the reasons I retired was to be able to help with Abby more.
One thing I wish people would understand about Abby and about, I think, others with Rett syndrome is that there are different ways of existing in the world, and I think Abby’s way of existing in the world is atypical, and therefore not something that most people get.
Her way of existing, I think, is to just be in the world. I think she likes being in a room with a bunch of people and just being part of that. She doesn’t especially need to participate in that conversation, I don’t think. She’s ever really taken to any of the communication devices we offered her. She’s nonverbal, doesn’t seem to have this desire that we think, “Well, all human beings want to communicate, don’t they? They want to tell you their opinion about stuff.”
Well, maybe not. Maybe there’s another way of being.
As far as being a caregiver of a now adult woman with Rett syndrome, the best advice I have if you’re new to this world is to start thinking in the long term now, even though your child might be 3 or 4 years old and you’re sort of caught up in the newness of it.
With the improvements in treatment and early diagnosis and stuff, these people with Rett syndrome are going to be living longer and longer. Who’s going to be helping you care for this person?
There are two of us. It’s really more than a two-person job, and it’s hard to find the help that you need.
I wish we had developed a better circle of care than we have right now.
Start shaping your lives as if that 3-year-old with Rett syndrome is someday going to be a 33-year-old with Rett syndrome, and you’re going to be 30 years older than you are right now.
It’s a marathon, not a sprint, as they say.