Holding On, With Incredible Strength
The season started early -- no frosts after mid-April as I mentioned recently -- and it moved along like a steady freight train on a long haul. Seven months later, I realize that I only left the area once, to go to Alissa's graduation at the end of May. Other than that, we have been riding that train, taking things off and putting things on, rearranging the load at every stop, but never getting off. It has actually been a great ride. As always, it's the people on the train with us that make the whole trip worth it.
Jon and I left Virginia together on Saturday evening, leaving the rest of the weekend work in excellent hands. We headed to a cheap motel in Phillipsburg, NJ (a town that Jon often stops in between Boston and home because of the cheap gas and good hot dogs). The sign by the road said: "Mid-century Charmed Rooms Truck Parking." Very clear about their offerings. It wasn't so bad, and we just needed a place to sleep so we could be near our destination early in the morning.
Our destination was the home of Carrie and Al, people I have written about before in other spaces. In brief: Carrie is a few years older than I am, worked on the farm for many years after graduating from Oberlin and Al worked on another farm for many years because he was friends with the owners. The two met when Al was picking up an order from our farm, they both noticed each other immediately, and they have been married for the last 30 years or so. Carrie started out as a medical illustrator and eventually turned into a clinical research project manager. Al became an emergency room nurse. They have lived in various places around the country and most recently they landed in NJ. We lost track of them over the years.
A couple of years ago I learned from our mutual farmer friends that Al had ALS and was losing strength in his core. He couldn't hold his body upright but he could still walk. So now I finally knew where they were again, and I got in touch with Carrie. We had to get through the season, but we finally went to visit for the first time on the day of the Kavanaugh hearings (which were on the radio the whole trip).
Carrie had been a daily presence in our lives thirty years ago but we had not seen her in the years between. When she came bursting out of the kitchen door, we saw the exact same exuberant, wiry person with a long, grey braid instead of a brown one. Everything about her was completely familiar. She has so much energy, she talks fast and furious, and she is a whirlwind of loving details. We went into the house with some trepidation but recognized it immediately -- full of piles in every room, a rambling and sprawling house that reminded us instantly of my aunt's house on Walnut Place. My aunt's house has higher ceilings and is more majestic but the feeling inside is the so similar.
So we carefully walked through the kitchen and peeked into the dining room where Al was in a hospital bed, tethered to a ventilator, propped up by pillows. After about one minute, I was relieved to find that he is the same Al with the same mind and the same gentle humor. At the time, he could still move his legs and shift his position. By now, he can't move anything below his neck.
Carrie is his sole caregiver. Aides come a few days a week for a couple of hours to help with moving and bathing, but Carrie is on duty every day, every hour. She still has a full time job, incredibly, working on computers upstairs in her office.
After a rough year of learning how to manage everything and having emergency rides to the hospital, they have not had a hospital emergency in 16 months. They have settled in.
For most of us, this would be hard to imagine. Perhaps impossible. But the combination of their skill sets and their personalities has made this existence possible. Al has helped Carrie learn to be a nurse. Carrie has always been a master of details and efficiency but no one ever thought she would end up in this role. She is a hard worker, someone who needs almost nothing for herself. She is the oldest of eight. A long life of caring for others.
I realized yesterday what one of the most important elements of their joint success is -- mental health. Mental strength. As my friend Sarah said just last night, "without your mental health, you do not have health." And Al said yesterday morning, "I am not sick. I am disabled."
Somehow Al and Carrie had the tools to accommodate this scary and vicious diagnosis. I don't know how long it took them to accept it, but Al had to make a decision very early about whether to go on a ventilator. Unlike many other ALS patients, his diaphragm was affected early -- instead of losing the use of his legs first, he lost the ability to breathe on his own. He had to choose whether he wanted to live. Other ALS folks have to adapt to a series of losses, but breathing usually keeps happening. Only 3% of patients choose to go on a ventilator because by then they have spent so much time losing their body that it doesn't seem like a good life. Because he is part of such a small population, the medical world can't help him much. They don't know much about people who last this long. Carrie and Al probably know as much as anyone about what it takes to keep on going. But neither of them has the time or capacity to go anywhere to share what they are learning.
Anyway, Al said again yesterday that his life is possible because of the amazing Carrie. And I reminded him that he plays a big role in this -- if he were grumpy or mean or depressed, she wouldn't be able to keep going. Because he somehow manages to stay grateful and even-tempered and nice, she can continue to muster the strength to do this. He has said that if he has to go to a facility, he doesn't want to live. So they keep going, one day at a time.
There is no way to predict what will happen when. His airway could get blocked (it happens regularly, and Carrie so far has managed to remedy the situation in time), he could get an infection, he could get sick. But so far he doesn't even have bed sores. His color is good, he spends his days reading and reading, keeping up with the news from the internet, and writing painstaking letters, using his eyes.
Visiting them is uplifting and heartbreaking. We have been to see them probably four more times, sometimes for just a few hours, once my mom and I went and spent the night. I encourage everyone who knows them to go for a visit. They love to see people. I wish we could figure out how to make a huge door in the room he lives in so we could push his bed outside and he could breathe air from the outdoors. It is too much for Carrie to figure out how to move him by herself, even though they have equipment accumulated throughout the house (with each new level of deterioration, each piece of equipment lost its usefulness quickly).
They lived without community for their whole married life, from what I can tell, but I don't really know since I missed that part of the story. One hard part is that they moved to this house just as Al was starting to have symptoms, so all they managed to do is move there before he became a patient. Many rooms just have boxes that were never unpacked. They don't even know their neighbors much ( a rural area).
This story is so far outside the norm of how I think people should live -- in groups, in community, near family. I can see how this can work, but I can also see how different it could be if Carrie could have help that wasn't only paid professionals. It seems that Al has no family and Carrie's family comes when they can, but they are not close by.
As it happens, we visited them because we were on the way to the memorial service of the husband of another mutual friend, and this person had ALS too. We have learned far more than we ever imagined about ALS in the last year. No one really wants to learn about that, and certainly not first hand. It is a cruel diagnosis.
Once again we gain perspective on all the ways that we have been fortunate. Wildly fortunate. It is humbling to be so lucky. Especially in the mental health department.
Jon and I left Virginia together on Saturday evening, leaving the rest of the weekend work in excellent hands. We headed to a cheap motel in Phillipsburg, NJ (a town that Jon often stops in between Boston and home because of the cheap gas and good hot dogs). The sign by the road said: "Mid-century Charmed Rooms Truck Parking." Very clear about their offerings. It wasn't so bad, and we just needed a place to sleep so we could be near our destination early in the morning.
Our destination was the home of Carrie and Al, people I have written about before in other spaces. In brief: Carrie is a few years older than I am, worked on the farm for many years after graduating from Oberlin and Al worked on another farm for many years because he was friends with the owners. The two met when Al was picking up an order from our farm, they both noticed each other immediately, and they have been married for the last 30 years or so. Carrie started out as a medical illustrator and eventually turned into a clinical research project manager. Al became an emergency room nurse. They have lived in various places around the country and most recently they landed in NJ. We lost track of them over the years.
A couple of years ago I learned from our mutual farmer friends that Al had ALS and was losing strength in his core. He couldn't hold his body upright but he could still walk. So now I finally knew where they were again, and I got in touch with Carrie. We had to get through the season, but we finally went to visit for the first time on the day of the Kavanaugh hearings (which were on the radio the whole trip).
Carrie had been a daily presence in our lives thirty years ago but we had not seen her in the years between. When she came bursting out of the kitchen door, we saw the exact same exuberant, wiry person with a long, grey braid instead of a brown one. Everything about her was completely familiar. She has so much energy, she talks fast and furious, and she is a whirlwind of loving details. We went into the house with some trepidation but recognized it immediately -- full of piles in every room, a rambling and sprawling house that reminded us instantly of my aunt's house on Walnut Place. My aunt's house has higher ceilings and is more majestic but the feeling inside is the so similar.
So we carefully walked through the kitchen and peeked into the dining room where Al was in a hospital bed, tethered to a ventilator, propped up by pillows. After about one minute, I was relieved to find that he is the same Al with the same mind and the same gentle humor. At the time, he could still move his legs and shift his position. By now, he can't move anything below his neck.
Carrie is his sole caregiver. Aides come a few days a week for a couple of hours to help with moving and bathing, but Carrie is on duty every day, every hour. She still has a full time job, incredibly, working on computers upstairs in her office.
After a rough year of learning how to manage everything and having emergency rides to the hospital, they have not had a hospital emergency in 16 months. They have settled in.
For most of us, this would be hard to imagine. Perhaps impossible. But the combination of their skill sets and their personalities has made this existence possible. Al has helped Carrie learn to be a nurse. Carrie has always been a master of details and efficiency but no one ever thought she would end up in this role. She is a hard worker, someone who needs almost nothing for herself. She is the oldest of eight. A long life of caring for others.
I realized yesterday what one of the most important elements of their joint success is -- mental health. Mental strength. As my friend Sarah said just last night, "without your mental health, you do not have health." And Al said yesterday morning, "I am not sick. I am disabled."
Somehow Al and Carrie had the tools to accommodate this scary and vicious diagnosis. I don't know how long it took them to accept it, but Al had to make a decision very early about whether to go on a ventilator. Unlike many other ALS patients, his diaphragm was affected early -- instead of losing the use of his legs first, he lost the ability to breathe on his own. He had to choose whether he wanted to live. Other ALS folks have to adapt to a series of losses, but breathing usually keeps happening. Only 3% of patients choose to go on a ventilator because by then they have spent so much time losing their body that it doesn't seem like a good life. Because he is part of such a small population, the medical world can't help him much. They don't know much about people who last this long. Carrie and Al probably know as much as anyone about what it takes to keep on going. But neither of them has the time or capacity to go anywhere to share what they are learning.
Anyway, Al said again yesterday that his life is possible because of the amazing Carrie. And I reminded him that he plays a big role in this -- if he were grumpy or mean or depressed, she wouldn't be able to keep going. Because he somehow manages to stay grateful and even-tempered and nice, she can continue to muster the strength to do this. He has said that if he has to go to a facility, he doesn't want to live. So they keep going, one day at a time.
There is no way to predict what will happen when. His airway could get blocked (it happens regularly, and Carrie so far has managed to remedy the situation in time), he could get an infection, he could get sick. But so far he doesn't even have bed sores. His color is good, he spends his days reading and reading, keeping up with the news from the internet, and writing painstaking letters, using his eyes.
Visiting them is uplifting and heartbreaking. We have been to see them probably four more times, sometimes for just a few hours, once my mom and I went and spent the night. I encourage everyone who knows them to go for a visit. They love to see people. I wish we could figure out how to make a huge door in the room he lives in so we could push his bed outside and he could breathe air from the outdoors. It is too much for Carrie to figure out how to move him by herself, even though they have equipment accumulated throughout the house (with each new level of deterioration, each piece of equipment lost its usefulness quickly).
They lived without community for their whole married life, from what I can tell, but I don't really know since I missed that part of the story. One hard part is that they moved to this house just as Al was starting to have symptoms, so all they managed to do is move there before he became a patient. Many rooms just have boxes that were never unpacked. They don't even know their neighbors much ( a rural area).
This story is so far outside the norm of how I think people should live -- in groups, in community, near family. I can see how this can work, but I can also see how different it could be if Carrie could have help that wasn't only paid professionals. It seems that Al has no family and Carrie's family comes when they can, but they are not close by.
As it happens, we visited them because we were on the way to the memorial service of the husband of another mutual friend, and this person had ALS too. We have learned far more than we ever imagined about ALS in the last year. No one really wants to learn about that, and certainly not first hand. It is a cruel diagnosis.
Once again we gain perspective on all the ways that we have been fortunate. Wildly fortunate. It is humbling to be so lucky. Especially in the mental health department.
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