The Voyage of Rob Tinney
Donation protected
The first day of junior high school, Mrs. Morganroth, the language arts teacher, called "Robert Tinney? Is Robert Tinney here?" He wasn't. He wasn't there the next day either. Or the next. Or the day after that. For the first 3 weeks of 7th grade we all wondered who the heck this mystery kid could be. When he finally showed up we weren't disappointed. Not one bit. Rob was barely 4 feet tall. He wore a pink Izod shirt with the collar up, multiple watches and Converse sneakers. He had red hair, freckles and a feeding tube coming out of his nose.
He was officially the most interesting person in 7th grade. I was smitten. And 33 years later, I still am. He even made the feeding tube look good. He was my man of honor at my wedding, is the godfather to my son, my partner in crime and my true friend.
He has also lived with Crohn's, a mean and incurable disease of the intestinal tract, since he was 9 years old. Not in a oh-he's-a-little-inconvenienced-and-needs-to-know-where-the-nearest-bathroom-is-at-all-times kind of way. Nope. More in a learning how to negotiate a life with paralyzing pain kind of way.
Unfortunately, the Crohn's hasn't let up for the past 30 years. Not a bit. Robert's had to live a life apart in many ways. He's never been able to work or go to school. At least not for long. Crohn's has never loosened its grip long enough to allow that. He's one of the most brilliant people you'll ever meet, the type who can make the perfect pie crust, explain the taxonomy of plants and set the perfect table. He can make sense of both dense medical texts and arcane religious history and can grow absolutely anything on earth. But Crohn's is a thief.
10 surgeries. A colostomy. Literally too many hospitalizations to count. Too many medications to keep track. Stunted growth. A broken back. Ulcers in his mouth. Osteoperosis. Arthritis. He's a bit of a science experiment since few doctors have seen someone with Crohn's as severe as his. Half the time he can't eat. When he can, his body doesn't absorb the nutrition from the food. This winter, in the middle of a Crohn's flare-up, he was under 100 pounds, dehydrated, malnourished. I'd never seen him that frail. I walked into St. Francis Hospital and didn't recognize him. I thought I had the wrong room.
Right now he needs yet another surgery to remove another stricture in his intestines. They won't operate until he is stronger and has gained more weight. Even then, his regular surgeon won't do it. It's risky since his abdominal wall is so compromised from multiple surgeries. He is trying to build up his strength and trying to wait out his current flare-up , waiting to see what happens and trying to find a surgeon. Robert is tough but it wears on him.
He doesn't like asking for help. Yet he's forever baking someone a cake, dropping someone off some vegetables from his garden, putting together packages for food drives. He's always ready to give when he can..to the LGBTQ teens he mentored for years in the community center in Hartford, to the nephew he helped raise, to his mom for whom he was the primary caretaker when she was dying of breast cancer, to the friends who are irresistibly drawn to him.
But he can no longer live on his own and that's why I'm writing you. He fell twice this winter. His bones are extremely fragile from years of steroid treatment. In fact, more of his pain these days comes from his crumbling bones than from his Crohn's.
So Robert is moving in with his brother and sister-in-law, John and Kris Tinney, this fall. They are building a small, handicapped accessible addition onto their house so he'll still have autonomy but also the safety and support of having family nearby. John and Kris are the generous primary funders of this project. Other family members are helping. However, there is still fundraising to do for furniture, carpeting and appliances.
I know there is a circle of people out there that has borne witness to both Robert's unforgettable personality and his strength of will in the face of an unrelenting illness. I know there is a circle of people out there that also knows the Universe doesn't hand out luck in equal doses so we humans have to do our part to even things out in whatever small ways we can.
Please help me help Robert make his new home with John and Kris. Help me move him into his new home and onto this next stage in his life. I want him to be making pie crusts and reading books and warming his bones and, dream of dreams, feeling better in his safe, new home as soon as possible.
Thank you for being the generous and open-hearted people you are. Thank you for reading this story about my amazing friend. I'm sure I didn't begin to do him justice.
Love,
Jen
He was officially the most interesting person in 7th grade. I was smitten. And 33 years later, I still am. He even made the feeding tube look good. He was my man of honor at my wedding, is the godfather to my son, my partner in crime and my true friend.
He has also lived with Crohn's, a mean and incurable disease of the intestinal tract, since he was 9 years old. Not in a oh-he's-a-little-inconvenienced-and-needs-to-know-where-the-nearest-bathroom-is-at-all-times kind of way. Nope. More in a learning how to negotiate a life with paralyzing pain kind of way.
Unfortunately, the Crohn's hasn't let up for the past 30 years. Not a bit. Robert's had to live a life apart in many ways. He's never been able to work or go to school. At least not for long. Crohn's has never loosened its grip long enough to allow that. He's one of the most brilliant people you'll ever meet, the type who can make the perfect pie crust, explain the taxonomy of plants and set the perfect table. He can make sense of both dense medical texts and arcane religious history and can grow absolutely anything on earth. But Crohn's is a thief.
10 surgeries. A colostomy. Literally too many hospitalizations to count. Too many medications to keep track. Stunted growth. A broken back. Ulcers in his mouth. Osteoperosis. Arthritis. He's a bit of a science experiment since few doctors have seen someone with Crohn's as severe as his. Half the time he can't eat. When he can, his body doesn't absorb the nutrition from the food. This winter, in the middle of a Crohn's flare-up, he was under 100 pounds, dehydrated, malnourished. I'd never seen him that frail. I walked into St. Francis Hospital and didn't recognize him. I thought I had the wrong room.
Right now he needs yet another surgery to remove another stricture in his intestines. They won't operate until he is stronger and has gained more weight. Even then, his regular surgeon won't do it. It's risky since his abdominal wall is so compromised from multiple surgeries. He is trying to build up his strength and trying to wait out his current flare-up , waiting to see what happens and trying to find a surgeon. Robert is tough but it wears on him.
He doesn't like asking for help. Yet he's forever baking someone a cake, dropping someone off some vegetables from his garden, putting together packages for food drives. He's always ready to give when he can..to the LGBTQ teens he mentored for years in the community center in Hartford, to the nephew he helped raise, to his mom for whom he was the primary caretaker when she was dying of breast cancer, to the friends who are irresistibly drawn to him.
But he can no longer live on his own and that's why I'm writing you. He fell twice this winter. His bones are extremely fragile from years of steroid treatment. In fact, more of his pain these days comes from his crumbling bones than from his Crohn's.
So Robert is moving in with his brother and sister-in-law, John and Kris Tinney, this fall. They are building a small, handicapped accessible addition onto their house so he'll still have autonomy but also the safety and support of having family nearby. John and Kris are the generous primary funders of this project. Other family members are helping. However, there is still fundraising to do for furniture, carpeting and appliances.
I know there is a circle of people out there that has borne witness to both Robert's unforgettable personality and his strength of will in the face of an unrelenting illness. I know there is a circle of people out there that also knows the Universe doesn't hand out luck in equal doses so we humans have to do our part to even things out in whatever small ways we can.
Please help me help Robert make his new home with John and Kris. Help me move him into his new home and onto this next stage in his life. I want him to be making pie crusts and reading books and warming his bones and, dream of dreams, feeling better in his safe, new home as soon as possible.
Thank you for being the generous and open-hearted people you are. Thank you for reading this story about my amazing friend. I'm sure I didn't begin to do him justice.
Love,
Jen
Organizer and beneficiary
Jen Prairie Jane Sage-Robison
Organizer
Manchester, CT
Robert Tinney
Beneficiary