JERRY’S JOURNEY – MY JOURNEY AS A CAREGIVER/SUPPORTER by jerry simon
A family photo - myself, Julie, and Trinity.
My wife Julie (her story here) was injured in an automobile accident ten years ago. Those who have sustained traumatic brain injuries have had their lives impacted forever and so have we - the caregivers. I vividly remember Julie walking out the door to go to work on that fateful morning and a few hours later, I was being led by a doctor back to the intensive care unit and she was lying in bed with tubes going all over the place and machines beeping left and right. In the blink of an eye we went from a perfectly normal household to Julie fighting for her life and me being thrust into the role of single parent, primary caregiver, and only wage-earner. For me, it was and continues to be a reminder of what is truly important.
Our journey over the last ten years is not something I would wish on anyone. That being said, I would be remiss if I didn’t say that portions of it are some of the most rewarding experiences of my life. In many respects, I have been in the front seat watching a miracle unfold before my eyes. We had the great fortune of attending a LoveYourBrain Retreat and witnessed first-hand the human spirit and resiliency shown by so many individuals. Coming together as a group of strangers at the beginning of the week, bonding throughout the course of the week, and witnessing the transformation that takes place is unbelievable. Rather than dwell on the struggles early on following Julie’s accident, I would like to share a few things I try to remind myself of.
My sister Julie and her family.
My mom and all her grandkids.
My brother Doug and his family.
BELIEVE: From a caretaker’s perspective and given the severity of Julie’s accident, the only initial hope I had was to BELIEVE everything would turn out. Not only do you need to believe in yourself and the decisions you are making, you also need to surround yourself with people who believe in you. I had the great fortune of having unbelievable support from my immediate family. My mom, Norma, my sister Julie and family, and my brother Doug and family. The support they provided can never be repaid and will be forever cherished. Putting their own lives and, in some respects, the lives of their families on hold to help in whatever ways they could was truly remarkable and really defines what it means to come from a supportive family. I must also mention my daughter Trinity. Although she was only two at the time and doesn’t remember much of the accident or recovery, having her to focus on and brighten my days made some of the other challenges seem less daunting. Finally, Julie. Initially, Julie could not make decisions for herself. I was thrust into the role of making many decisions that nobody should have to make on behalf of someone else. From the moment the doctors led me back to see her, I could tell that she was fighting and that she BELIEVED everything would work out and I would make decisions I thought were best for her, myself, and Trinity.
Our friends, Craig and Heidi!
We also had incredible support from our neighborhood, my work community, some special friends we met early in our journey (Craig and Heidi who believed in us even when we didn't believe in ourselves), and countless people that donated to several fundraisers. As for our wonderful neighborhood, we learned to say yes!
RESILIENCY/RESOLVE: With a brain injury, you may never fully recover but RESILIENCY – the ability to bounce back – is a common trait among TBI survivors. The same is true for their caregivers/supporters. Maintaining a full-time job while providing the support that both Julie and Trinity needed required RESILIENCY and RESOLVE and would not have been possible without the support of those who BELIEVED in us.
ATTITUDE: Attitude is everything. Admittedly it is difficult to maintain a positive attitude when life throws you a curveball like we were thrown but you do the best you can. No matter the challenge, trying to maintain a positive and cooperative attitude is infectious to those around you and to those helping in the recovery. The biggest instance of the influence of a positive attitude I can think of was on our last appointment with Julie’s neurosurgeon. Julie asked a question that she felt maybe she didn’t ask right or should have been an obvious answer and said “Sorry...I should have known.” Without missing a beat, the physician’s assistant immediately said, “Are you kidding me? Don’t YOU ever apologize in this hospital. You and Jerry are rockstars around here.” As we were leaving the examination room, our neurosurgeon saw us and asked us to follow him. He took us to the room where the entire neurosurgery staff was consulting on cases. They all told us that our attitude in the face of adversity was unbelievable.
A beautiful morning at the LYB Retreat
Another way I’ve kept a positive attitude is through a dry sense of humor. We took a follow-up trip to the hospital the following Christmas to say thanks. Julie wanted to get everyone something but wasn’t sure what she could possibly give a neurosurgeon. I told her to let me take care of that. We took a care basket for them to share and I also had an individual roll of Lifesavers for everybody in the room!
Julie’s “bring it on” pose at the 2019 LoveYourBrain Retreat
INSPIRE: I don’t consider myself an inspiration. Those supporters who have at times put their lives on hold, who have prepared and delivered meals, who have taken time out of their schedules to provide rides for Julie, and the many others who helped - they are the true inspiration. There are a couple of instances over the last ten years I would like to share as the words of encouragement meant the world to me at the time.
Julie had just passed a milestone and I wanted to let people know that she was working hard and was truly an inspiration to all of her doctors and therapists. One individual responded, “Jerry, it is very admirable how you are always recognizing Julie’s efforts, but you really need to give yourself some credit. You were thrust into a difficult situation and have done some pretty heroic things yourself.” This brought tears to my eyes as it was one of the first times someone verbally acknowledged that my life and the lives of those closest to me had changed dramatically and that it was not an easy journey.
The second was on our initial trek up Pikes Peak as part of the Pikes Peak Challenge. We had just achieved the summit and I mentioned to the attendant placing the medal around our neck that Julie was a TBI survivor. As we were celebrating our achievement, this same individual came up to me, “Jerry, are you Julie’s caregiver? I wanted to say thank you. I am a survivor and I know that caregivers work just as hard as the survivors but often don’t get acknowledgement for their efforts. From a survivor, I want to say thank you for your efforts as the caregiver.” This again brought tears to my eyes and I remember thinking that at times, we’ve had to adopt the Marine Corps mantra – “Improvise, Adapt, Overcome”.
NEVER GIVE UP: At times, giving up seems like the easier thing to do. Obviously, the patient needs to have the attitude of NEVER GIVE UP, but it is just as important for the caregivers to have that attitude. For the first few weeks following Julie’s accident, I didn’t know the details of what happened. I intentionally avoided learning of the accident as all I wanted to do was focus on Julie and Trinity. Fortunately, because of the unbelievable support from family and friends, I was able to do that. I truly believe that helped me keep hope that things would be all right and giving up never entered my mind. Over time, the challenges have become less daunting but still exist. In 2019, we had a few setbacks in our journey but by BELIEVING everything would be ok and being surrounded by people who BELIEVED in and wanted to help, by maintaining a positive ATTITUDE, and by NEVER GIVING UP, we were able to get through the challenges of the year (but are still working through the challenges of 2020 – I'm sure anyone reading this can relate)!
Believe, Resiliency/Resolve, Attitude, Inspire, Never give up – BRAIN. It may seem corny, but I use this to remind myself when things are difficult of how far we have come and to realize that whatever the current challenge is, it too will pass. However, I also fail at all of these. There are times where you wonder if you have the resiliency and attitude to bounce back or if it would be easier to give up. Failing is only failing if you don’t learn from it. We are human, we are not perfect and we all make mistakes. You do the best you can and when you make a mistake, you learn from it and move on. Easy to say but I’m still working on the moving on part.
Our family - Julie, Trinity, Jerry, and Comet!
Again, I would not wish this journey on anyone. A brain injury is one of the cruelest of injuries. The injury is not visible and often, close supporters and caregivers may be the only ones (aside from the injured) who realize that there may be some issues. Cognitive and chronic fatigue, medication side effects, memory loss, and waking up in the middle of the night to someone in the middle of a big seizure are all VERY real. While difficult for those with a TBI, we as caregivers and supporters have our own challenges navigating this journey. This journey has made me more compassionate, less judgmental, and has made me realize what is truly important. Life is a gift and if we’re not careful, we let it pass by without truly enjoying it. We’ve also had the fortune of meeting some incredible people throughout our journey that we otherwise would not have met and have had the opportunity to get connected with this amazing organization. After a decade, I’m still learning my role in the process and what it really means to be RESILIENT. There are opportunities in every challenge that comes your way in life…take them.
ONWARD AND UPWARD!