In light of Monday’s events, today I am reposting something I wrote on my other blog, Living With PKD about Boston. Boston was my home for over 8 years. I have been to the Boston Marathon 4 times, one of which as Rick Hoyt’s personal care attendant. The city means a lot to me, and I wanted to share. Thanks for indulging me.
For background about this post, just know that I have polycystic kidney disease, and that I am in a drug study with a doctor named Dr. Steinman, who operates out of Beth Israel hospital in downtown Boston.
I love Boston.
I’m sitting in the airport terminal, waiting for my flight to take off back to Virginia. I woke up at 4:30 this morning to get here by 8:30, and my flight back to VA leaves in an hour. From VA to Boston and back again, all in one day. Oy. A long day, all for a blood draw and a chat with Dr. Steinman.
Also, this trip ended up being more expensive than usual, because I rented a car so I could go see my friend Rick. He has a new book out, One Letter at a Time, and you should buy it. Seriously. Go buy it. Like, right now. There’s an essay by me in there too, along with essays from a bunch of other folks, and I am chomping at the bit to read this book. It’s the first time Rick has told his story in his own words, and I can’t wait to sit down and soak in the Rick goodness.
The study will probably pay for the car, but the gas and the tolls, probably not. And I got completely turned around when I drove out of the airport, coming through a different tunnel than I had anticipated, and got caught in the rat maze that is Boston’s downtown financial district. It took me almost an hour to make my way to Beth Israel Hospital.
Still, totally worth it.
As I sat in my car down by the harbor, peering at my map and trying to get my bearings, I looked around and said aloud, “I love this place.”
I’m not sure why. There’s a lot about Boston that’s not particularly nice. And driving is on that list. But I don’t mind driving in Boston. In fact, I like it. It’s crazy, insane, and even kinda dangerous. My husband hated driving in Boston, because there is no rhyme or reason to the streets. You can’t navigate your way by pure directional instinct. You have to have a recipe for getting somewhere. Perhaps that’s why I like it. Using directional recipes is how we directionally challenged people roll.
Maybe I love it because so many good things in my life happened in Boston. I went to college there, and have only the best of memories of that time. I found my profession, made lifelong friends, dated and even fell in love for the first time on Boston University’s campus. I did some of the most interesting work of my life in Boston, taking care of Rick and two other quadriplegics, and I bought my first car there. Then I spent 3 years on the other side of the river, in Cambridge, when my husband went to Harvard Law School. It’s where my husband and I made our first home together, where I had my first real job as an SLP, and where I gave birth to my first child.
That’s a whole lot of good stuff, right there.
After my appt with Dr. Steinman, I meandered for a little bit before heading out to see Rick, driving down Commonwealth Avenue along BU, driving past my old freshman dorm and the first apartment I lived in my sophomore year. A lot of things have changed, mostly for the better. It’s not quite so ghetto, with better landscaping and flashier stores. But a lot of things looked the same, and I wished I had more time to meander. There was a big blinking sign that said, “Student Move In–Aug 27th-Sept 4th”, (or something like that) and it made me miss the time when that sign was talking about me.
Anyway, the appt went fine. I’ll get my labs sometime next month, or as soon as Bonnie gets the results from the blood draw back. We talked about whether or not I could get pregnant again, and Dr. Steinman told me, and I quote, “It would bother the hell out of me if you did that.” Okay, then.
Like every visit, I asked him about my timeline for a transplant, and he waved the question away. I pushed him, saying that the gesture wasn’t enough, and he bluntly said, “It’s going to happen. You’re going to need one. Not in five years, maybe not even in 10, but you *will* need one.”
I called my husband from the car in tears, and told him everything about the visit. He got quiet and said, “We forget you have this awful disease, don’t we.”
But he cheered up when I told him about how Dr. Steinman also confirmed his suspicions about my early satiety, how it has to do with my kidneys pushing on my stomach and making it smaller. What can I say, my man loves being right.
All in all, though, it was a good day. A good friend, a beautiful day in a beautiful city I love, and some me time to ponder and reflect on my future. Life is good.