November 2023 Hoffman Family Story

“Everything you wanted to learn about yourself, you learn in 26.2 miles.”

Bob Hoffman is a naturally gifted endurance athlete. Marathon runner, distance cyclist, workaholic. He’s done Boston, New York, Shanghai, and even the Great Wall marathons. He’s ridden his bike across Iowa. When Bob was 44 years old, we bought an equestrian property and he not only worked a full-time job as a supervisor at Pratt and Whitney, but “Farmer Bob” was like the Energizer Bunny when it came to clearing brush, repairing fences, or moving manure. So, when Bob suffered a ruptured aneurysm and two strokes in March of 2021, it was a devastating loss to his family.

On March 22, 2021, I heard Bob seizing in the middle of the night. He was able to get out of bed, clutching his head and complaining that he had the worst headache he’d ever experienced, and he immediately began vomiting. I tried to transport him to the ER on my own, but unfortunately, he had another stroke in the front seat of the car, and we had to call 911. Thankfully we live on our farm with extended family, and our cousins waited with us for an impossible 18 minutes for the ambulance to arrive. Bob’s ruptured aneurysm was the largest Portsmouth Regional Hospital had seen to date, and he was in surgery the next morning to place a permanent stent in his frontal lobe. We had no idea whether he’d know us, or speak, or walk, or feed himself ever again. It was about to be Bob’s most grueling marathon yet: a marathon of recovery.

After three weeks in ICU, then another two weeks in recovery, Bob was transferred to Spaulding Rehab in Boston. He could barely walk, feed himself, or dress himself. He didn’t know where he was or what the date was, and couldn’t remember what happened. But of all things, he remembered who I was and who our children were. Complicating his recovery was the fact that we were still on high COVID lockdown, with restricted visiting hours and no children allowed for any reason. For the duration of his stay at Spaulding, I drove back and forth from Maine every day. I would have dinner with him, we would FaceTime our family, play Connect Four, and watch some hockey. Bob had very little stamina in those days, and couldn’t be out of bed for more than 10 minutes or so at a time.

Bob was quite the case study for the team at Spaulding, as most people who have a rupture of his size don’t survive. Physically Bob recovered quickly, a testament to the great shape he was in at the time, but his memory and cognitive abilities were a much bigger challenge. He had hours of therapy a day at Spaulding, with some of the best speech, physical, and occupational therapists in the field. After a six week stay, they decided he was strong enough to come home and receive therapies in his own environment. We began working with a team from Rehab Without Walls. This team of women seemed to have unlimited patience, even when his short-term memory was five minutes or less. Even 10 weeks post rupture, Bob was still confabulating stories about helicopter rides, about having a brain tumor, or even about what he ate for breakfast. This team eventually helped Bob get back to barn chores, go grocery shopping, and play backgammon.

Two and a half years post rupture, I still have to remind myself that this is a marathon recovery, not a sprint. I’ve only trained for half marathons, but Bob has trained for many full marathons during the course of our marriage, and I do know what it takes, and I know that it hurts. You don’t feel successful every run. Some days you feel slow and tired, like you can barely put one foot in front of the other. Some days you feel like you’re flying and could go on running forever. It comes down to desire over reason, and pushing harder when you feel the pain. Traumatic brain injuries are often called an “invisible illness.” Some patients who are recovering from a brain injury or stroke can appear physically healthy. What isn’t obvious to casual observers is the effort of remodeling the brain. The brain is constantly doing mental gymnastics to not only keep up with the physical body and keep it moving the way it should, but also to process the world around. Cognitively the files in the brain are not in the last place they were left, they are scattered and disorganized, and it takes a lot of energy to search for information.

So, while Bob looks healthy and strong, which he is, only those that are part of his daily care know that he has been forever changed by this injury. We know how fatigued he can get after only 20 minutes of an activity. We know how confused he can get about the daily schedule or the activity on the farm. We know that he can’t remember conversations from earlier in the day, or the name of someone he’s just met. We know that he can’t pick out clothing without guidance, and might stand in the shower staring blankly until we point out which soap is his. Bob has said that “I don’t feel like I can’t do it, I just struggle with the HOW.” It’s like he knows what he should be doing and thinking, but can’t quite get the pieces all lined up.

The biggest change in Bob is his lack of motivation, or in more professional terms, his “initiation of tasks.” We used to call him the Energizer Bunny because he was on the go from dawn to dusk. He would get up at 5am, ride 20 miles on his bike, go to work, and then come home and help on the farm. He would haul and stack 350 bales of hay on a sweltering summer day. Most days now I can’t get him interested in anything for longer than a few minutes. He can sit quietly on the porch and just stare into space. When someone suggests a game of backgammon, half the time he says no and just wants to lay on the couch. At the end of the day, he is exhausted by 8:30. In my head I know that he has suffered a trauma and we have many days ahead of us working toward a new normal.

In this marathon of recovery, I feel like we are around mile 15 or 16 right now. We are too far in to see the starting line, where we came from, but not far enough into the race to see the finish line. All we can see is miles of lonely road ahead of us. Like running, recovery is a very personal experience. It can feel so lonely in those middle miles, and the exhaustion is disorienting, not knowing which way is forward anymore. All we have to go on is faith. Faith that God will provide the daily strength to keep going, faith that our family can take the daily pounding, and faith that we will reach a point where we can rest and find peace with the outcome.