The month’s leading up to the 14th anniversary’s of Nicholas’ fall from a tree has had me more involved in his care than I have been in close to 12 yrs…and it was about time. I was in my second year of graduate school for physical therapy when Nicholas fell out of a tree and became the brain injured version of the person that he once was. Prior to that, I had tried to move out west for grad school, but one of the top five Doctor of Physical Therapy programs was in Boston, so I stayed (zero regrets because the MGH Institute For Health Professions was the perfect place for me). However, I was seriously considering doing my third year, my internship year, out west. This was a secret to no one and a goal I was set on achieving. When Nicholas got hurt, my parents asked me to stay and, without hesitation, I stayed.
After the new norm for my family had been established and after my internship in Boston was done, it was time. I can’t recall if it was my parents who came to me first or was it myself that asked, but permission to follow my dreams out west was granted. I very distinctly remember my parents telling me that I had to live and that they had a responsibility to let me do that. With the same commitment they had to Nicholas’ recovery and quality of life, they were committed to the well-being of myself and my sister. They continued to nurture Kristin and me in this new version of our lives and, for me, that meant it was time to head to Colorado. There was a little asterisk next to the freedom I had been granted. The deal was to go live life, but to come home if and when it was needed. Deal!
When Jon and I got married he knew the terms. We are both acutely aware that our families are back east and we know that we may have responsibilities in the future, both long and short term. With the exception of helping my mother with a planned surgery in 2017, my first official “call to come help” came in September of last year. After a summer of struggling with declining mobility and cognition, Nicholas got diagnosed with an infected shunt (in layman’s terms, a drain in his brain that manages cerebral spinal fluid) and he was suddenly looking at a prolonged hospitalization to treat the infection followed by surgery for a new shunt. Here’s the kicker, my folks were bound for Africa, which meant Kristin and I had to put our lives on hold to help out while they were away for a few weeks. Truthfully, it wasn’t that hard and, after an initial surge of emotions focused around safety and well-being of my parents, I was happy to do my part to let them live their life. I don’t live in Massachusetts. It’s easy for me to be there and not be pulled in a million directions. It’s harder for Kristin. She lives there. She has a life complete with a job, a husband and a kid. I can’t imagine the strain she felt.
The hardest thing about Nicholas being hospitalized is his expressive aphasia. For all intents and purposes, he can’t talk (but he can understand everything). He can’t make his needs known and he’s extremely sensitive to sudden noises and people touching him. Unfortunately, a hospital is a horrible place to be if you can’t speak and don’t like loud or sudden noises or people touching you without warning. And it’s a really horrible place to be for 6 long weeks. Therefore, while he was awake he needed family with him to get through the days. This meant that from 7:30am-10 pm he needed coverage. Thankfully, along with Kristin and I, Nicholas’ lovely + dedicated caregiver of close to 12 years, Jackie, was a huge part of the scheduling puzzle for night time coverage.
I don’t really want to get into what it was like for Kristin and me to be “on” while Nicholas was in the ICU. That’s not the point of this, but I will digress necessarily for a moment. We each have well over a decade of acute and ICU level care experience in our professional lives. Kristin is a talented RN who happens to work in an ICU herself and I spent the greater part of 10 years as a physical therapist working in the acute care and ICU settings. It’s really hard to be a patient or a family member regardless of your background. I swear it is super wicked extra hard to be a family member when you know everything about how hospitals operate. When you can both sympathize with the overworked and understaffed RN + PT, but yet you are going to fly off the handle if you brother doesn’t go for a walk because it’s been two days since he bore weight on his legs for no reason other than staffing and a few too many IV lines or drains. Thank goodness that we are both in healthcare, truly. From both a sympathetic daily rant to effective advocating and understanding the system, we are lucky. But man was that trying.
So why am I bothering to explain this particular hospitalization? Why am I painting the picture that I am? Because, this blip on the radar, this interruption in the regularly scheduled program of Nicholas’ life made me spend time with this version of my brother. It forced me to remember how much about this guy I love. With that comes a smack across the heart about how desperately I miss the old guy, but that’s met with the sweetest smile and sparkliest eyes of this new guy. This 47-year-old guy who wakes up from a nap like clockwork at 5pm and looks at you with a huge grin like he hasn’t seen you in years. Thanks, short-term memory loss. This guy who spends a lot of his time singing and giggling. Most importantly, this intense involvement in Nicholas’ care reminded me why my parents work so hard to help him thrive. Why they still care so much. From 1700 miles away it’s easy for me to voice my desire for Nicholas’ physical time on this planet to wrap up (a sentiment that my entire family echoes), but damn if I didn’t need a reminder that, while he is not dying tomorrow, this sweet brain injured human truly does deserve the best of what we, as a family, can offer him. As my mother recently wrote, “When Nicholas smiles, we all smile”.
Since Jan 5, 2005, my sole purpose on this earth has been to support my parents in whatever they need. We all got dealt a shitty hand. I’m not here to make their lives harder. They have done everything they can to make my life easier, something they would have done with or without Nicholas’ accident. So if and when the calls come to help out again, I will. Sure, I’ll be overwhelmed by the disruption in my life and in my business, but I know the reminders about daily life with Nicholas are necessary and I appreciate them.
I needed to spend these weeks with him to remind myself that I’m good at helping him. I may not see him every day, but I know what he needs. I know how to advocate for him. I know how to create an environment that is as favorable as it can be, in an unfavorable scenario. I want my parents to know that I truly do understand him and he’s in good hands with Kristin and myself. I need my family to trust that I’ll hold up my end of the deal and come back east to help when asked. They deserve that peace of mind. After all, I have a brother with a brain injury. Yup, still sounds strange 14 years later.