My Lived Experience With 2 Different Survivor Stories. My Mini-Memoir :)

I’ve been pondering this post and reflecting on this notion for the past couple weeks, so I’m going to put on the vulnerable hat here and share my perspective of living in 2 very different medical diagnosis worlds. I don’t talk a lot about this, at least in one space, and with this blog now started, here is my chance to talk about my personal insight and lived experience from both the TBI survivor world, an invisible diagnosis that I live with every day and also the teen cancer survivor world. The cancer survivor world became part of my life the year after my TBI, which was also a very life-changing diagnosis – not better or worse, but yes very different. Especially the culture of them, which is what I feel called to talk about and maybe bring some insight for others and also words that speak what maybe you or someone you know has felt but not always been able to say, which is part of my intention of why I started this blog space. So lets chat about this…

It’s also kind of a mini-memoir post if you haven’t read my memoir...

A condensed version ;) At least my best attempt at being as condensed as possible to share this, bear with me and get comfy...

I was an 8th grader when I woke up one day with a headache – I was the healthy kid that never got sick and hated missing school for anything! – I insisted on going to school that day. I don’t remember any of this day or about a 6 year chunk of my life. Vague memories. I see photos and remember being there, but do I truly have memories of the experience or that chunk of my life? No. By lunchtime that day I finally caved into the pain and went to the school nurse who assumed it was the flu and called my mom to pick me up at her lunch break. My mom came to get me and knew right away something was seriously wrong. I was not myself. We didn’t know it then but my brain was being attacked by a virus and I was going into a coma. She took me to the Emergency Room immediately and called my dad who was on the road that day for work. At first they were worried it was Viral Meningitis, but the spinal tap results came back negative for that. Yet they knew I was going deeper and deeper into a coma, fighting for my life and they needed to fly me to Minneapolis Children’s Hospital. Also at the time, a snow storm had started and the helicopter couldn’t take off. By the grace of God – the first of many Earth Angels in my story that fateful day and week – a pilot was able to fly me and my mom in a small medical plane to Minneapolis Children’s. If I wouldn’t have been flown out at that moment, I would have died that night from the virus attacking my brain. My dad had to drive in that weather and also by the Grace of God made it – he said he remembered passing a snow plow and driving 30 mph the entire way up there, praying he would make it and he did!

Also by God’s Grace and Divine Intervention, I was seen that night by the top disease specialist and pediatric neurologist in the state of Minnesota, also in a state that highly values medical research and funding, thank you God.

My parents didn’t sleep that night and stood by my side in the ICU room praying I would wake up.

The doctors informed my parents that night I had Herpes Encephalitis that was attacking my brain. Like most people, herpes simplex comes out in the form of a cold sore, but for whatever reason, in which we didn't know at the time, this virus formed and decided to turn around and attack my brain. To treat it, a newer drug had recently been introduced called Acylovir that they were going to give me intravenously, and all my parents could do at that time was wait and pray. Only time would tell how long I would be comatose. Doctors prepared my parents to hope for the best, but also be prepared for the worst, having no idea how long the coma would be and how bad the damage to my brain would be if I did wake up. The virus could also still attack my brain and kill me if this medicine didn’t work.

I had relatives by my side at all times in the days to come and lots of people praying for me! Many relatives and friends were supportive to my parents and my brothers and myself in those days. My brothers stayed back home with grandparents until they came up eventually 2 days later and saw me. They were 12 and 8 at the time. They then all stayed at the hospital hotel together and would visit me for short bouts of time, each time they saw me it was easier for them. My parents informed all visitors that they didn’t know for sure if I could hear anything or not. Some people in comas wake up and say they could hear it all but couldn’t wake up to respond and it was very frustrating, so my parents informed everyone to stay positive and speak positive and do their best to keep the emotions outside my room.

My Grandma Galvin brought Holy Water to anoint me and pray over me and also had a priest provide a Blessing of the Sick, and shortly after my Grandma anointed me with the Holy Water, I started slowly making movement and sounds that began the wakening process on December 18, 5 days after being comatose. Interestingly, I’ve always felt a special connection since then to Holy Water as someone who grew up in the catholic church. And even more interestingly, I knew when I started providing Energy Healing to others years later that I wanted to somehow anoint the sick and felt called to give back in that way, eventually being guided to the Essential Oils and Raindrop Technique training years after my Reiki and Healing Touch certification…. Life has a way of somehow Guiding us to these full circle healing opportunities. That was definitely one of mine and something I hold near and dear to my heart and am honored to share with others now on this journey.

When I woke from the coma, I knew my family and where I was from, etc. Long term memory was still there, but my short-term and intermittent was damaged. I would ask where we were and they would answer and I would ask the same question 10 minutes later. It became a guessing game for me to remember my nurse’s names. They had me start right away with writing things down as a tool to remember. Doctors told my parents once again that only time would tell, that the brain is a muscle and can find new pathways to connect, but that also we don’t know yet what permanent scarring was left from the virus and we wouldn’t truly know until one year later when we would do a follow-up MRI. My dad has always said he never prayed so hard in his life than he did that year… Sometimes the guilt of that hits me hard :( … (yay for good therapists! Wink wink)

I woke up a different person, a different daughter, a different sister, a different friend. It’s tough enough being 14 years old, period. Going from a perfectly healthy teen girl to a sudden disabled teen girl with a TBI diagnosis and label was no easy feat or journey and I’ll share parts of those challenges in the posts ahead when they come up and I feel called to write about it. It’s complex and not easy to put into words without feeling like you’re re-writing an entire novel. Especially since it has now been almost 30 years!!!! Man that hits me hard to write that. So ya… there’s A LOT to this when you’ve lived with it for 30 years now. But this isn’t meant to be a perfect written novel or memoir … this is a blog and it as real as it gets and this space and my writing is meant to be authentic. I will share my perspective for the intent of healing, not just for myself, as I believe healing is on-going and never-ending, but also for the benefit of anyone else who resonates with this.

We spent 14 days in the hospital – actually spent Christmas in the hospital. My parents brought up the small Charlie Brown Christmas tree and we did our same tradition we always do on Christmas Eve with my family, but inside the small hospital room and with food my family made and brought in. My parents often say it was one of the most special Christmas’ they cherish …. I wish I had memory of it, but I don’t. Only the video we have from it, which was also a nice Divine gift. My parents didn’t have a camcorder at that time in 1995 – they were expensive then and still pretty ahead of their time then, but a relative borrowed their’s to my parents and we have old video of that Christmas Eve, which is something I hold near and dear to my heart. I haven’t watched that video in a long time, especially since it’s still on vhs, but it’s on my to-do list this year to finally get that converted onto my computer so I can watch it more often and also share it, especially with Evan, my son.

There’s also some funny memories from that time in the hospital…. I wanted to open a gift soooo bad – they were in front of my face the whole time as I laid in that hospital bed! Talk about torture! And with my memory loss, I could never remember what day it was and would ask to open just one gift, and then forget that I had already asked 15 minutes ago and told “no,” so would ask my mom over and over and over again. She finally got the bright idea to let me open just one small gift and then since I forgot I opened it, she re-wrapped it and I opened it MULTIPLE times that week and was just as surprised every time! HA! Smart mom ;)

I was also very affectionate when I woke. “Manic” emotions is something that can happen post-coma and with TBI, so I would get emotional and also ask everyone for a hug. My brothers asked one day if I was always going to be that nice! Yes, I was a nice sister, but we were also the typical siblings and had our moments and it was not normal for me to be THAT nice all the time! With each passing day, those manic emotions dwindled and I was becoming more of “myself” …. but was definitely a forever changed self.

The girl I was before December 13 died that day.

The process of grieving that chapter, or I should say part 1 of my previous life, hasn’t always been easy and still at times hits me and will be part of my journey for as long as I live.

That’s grief. I have learned from this experience A LOT about grief. Grieving is not only for someone who dies. We can grieve anything and everything and I think sometimes it doesn’t always get recognized as grief and we don’t honor it as that process enough. But yes it is truly a process – and it’s nothing linear. There’s no roadmap for it and no timeframe on it, each person’s journey of it completely different than the others.

The Rehab side of this journey I’ll save for a different post – probably multiple posts broken up, cause it’s a lot! Understatement. Especially 30 years of never-ending rehabilitation and learning to live with a permanent Traumatic Brain Injury.

We were sent home 14 days later and a whole new life began for me …. there was nothing easy about it. And there’s a lot of memories and not-so-pleasant chapters during this time that were very challenging and are not proud moments to talk about or share with others. Have I had many blessings and support and achievements and much to be proud of? Yes and for that I am grateful! And I’ve healed my pain and wounds and shame and identity with it. It’s not a walk in the park by any means, but yes it’s possible to move beyond. It didn’t happen over night, but after 3 decades living this life, yes I’m at peace and know myself well and for that am grateful.

But there are also very painful and challenging parts of this story that came with the territory of all of this. Nothing no one asks for on this journey, or is proud to own, but that comes with it and the only choice you have is how you are going to respond to it. I did my best to respond as a survivor and at times a very stubborn survivor who refused to believe the grim outcomes and statistics I was informed of as the reality of my life and future. Ironically, most of the time that stubbornness was my saving grace and the very reason I fought through the statistics and the many walls placed in front of me that I had to break through.

I’m also well aware that my story is very unique and I’m blessed to say that I’m probably in the top 1% of people who live with TBI … for various reasons, some simply by God’s Grace and Miracle that I thank God for every day. Truly.

Today though I want to talk about the lived experience of it and the different cultural norms I’ve come to see from the 2 different worlds I experienced as both an invisible disease and a visible disease.

For anyone else who lives with an invisible disease/illness, this is for you and I hope you feel seen and heard from me putting this into words.

My cancer journey started 14 months after that fateful day in December of 1995. February 19, 1997. I don’t celebrate or honor this day as much as I do December 13. Not because it doesn’t matter or that I don’t have gratitude for that survivor hat I also wear, but simply because cancer didn’t change my life as much as the TBI did. My coma was a very drastic and sudden collapse and destruction of my entire life and because it was so traumatizing, I need to give space on that day for there to be gratitude and positive memories and acknowledgement for my journey. It’s a different energy than the day my cancer diagnosis came.

My cancer journey began when I was in 9th grade geometry class and I lifted my hand to my neck and felt a lump. I knew intuitively in that moment when I felt it that it wasn’t meant to be there and instinctively had a feeling it was going to be bad news. I showed my parents and at first we kind of shrugged it off and agreed we would keep an eye on it, thinking after the year we just had that the last thing it could be was cancer. But my mom made an appointment with my general physician who also happened to be the first doctor who saw me the day my mom brought me in with my headache that started the Encephalitis. I do remember seeing in his eyes as he was examining me and asking me questions about the other symptoms I was having, that he actually got emotional. We were given guidance by him to go back to Minneapolis Children’s Hospital again that week where I went through further scans and bloodwork and it was then confirmed I had Hodgkin’s disease. Thankfully a treatable cancer, but we had to choose if we wanted to due chemotherapy or both chemotherapy and radiation. We chose the chemo only path and I started later that week for 6 months. 2 weeks on, 2 weeks off, with pills taken every day that were NOT fun! I can still taste that in my mouth when I think about it. Eh!

This was 1997 and thankfully my parents, especially my mom, was very open to holistic health concepts and we had various people show up in our lives, again Earth Angels, who would provide us guidance and support with their services that kept me healthy in all ways! The chemo did its part killing the cancer and the other services and products kept my immune system boosted, and my emotional and spiritual self healthy. Also a future blog post I’ll write eventually. I’ve experienced A LOT of different healing modalities and products in my life!

I actually handled chemo pretty dang well and barely ever got sick from it. I still played sports in school through it and never missed any school except for the days I had chemo. Doctors were shocked at how well I responded to the chemo. Our support systems and protocols worked and after 6 months I was declared cancer free and by the Grace of God have been cancer free since!

Cancer ended up being one of the biggest blessings and disguised gifts of my life. What cancer gave me a year after living with an invisible disability was a visible and UNDERSTOOD diagnosis and journey that wasn’t as intimidating or “scary” to try to have others understand about me. And not just for others, but also for my young 15 year old self. It also gave me a place of BELONGING. Thank you God for that gift! No one I knew in my life at that time had experienced a TBI, especially a TBI as a teenager, and especially as a high-functioning TBI survivor. As the year progressed and time went on, I was starting to understand better that I was in a very unique category that very few were in. Because of my age and because my coma was 5 days and because of what part of my brain was impacted, and my parents being in rehabilitation fields and the MANY MANY MANY skilled professionals and teachers I had, my story was different than anyone else’s TBI story we had heard of. Both pros and cons to that...pros that I was able to do MANY things that professionals thought I would never do - drive, graduate high school on time, attend college full time, attend a 4 year college, attend graduate school, work, etc. But also cons in that I had no one to look to who was ahead of me as a mentor and to give me insight on what to expect. I had no road map or support plan. We made the plan and I paved my own way.

The very first week I was diagnosed with cancer, I was introduced to the social worker childcare specialist on the Oncology floor, Vicki! She was AMAZING AT HER JOB! Her job was to make cancer as “fun” as it possibly could be for the kids and teens enduring it. After the year of shame and trauma from the TBI, I ran with this cancer as fun card and I lived every minute I could as FUN as I possibly could! We brought friends and family to every chemo visit and they spoiled us!

And I was introduced that summer to cancer camp! I was always envious of my teen friends who attended church camps every summer and always wanted a camp! Well I finally got one!!!!

I went to Camp Courage that summer for teen cancer survivors and met some amazing teenagers who became lifelong friends from the instant we met. That shared bond of understanding facing your own mortality at a young age is something you can’t understand until you live it and to be in a room with other teens your age who do get it, is a true gift. I also attended a cancer camp in Montana the summers to follow for young adults with cancer and met other teens who changed my life. Some of whom we’ve since lost and who I miss dearly, but give thanks to God for the opportunity of knowing them and of them changing me.

This chapter of my life was A LOT of change from the TBI, and what these friendships gave me was a bond of understanding and finally a sense of belonging from others who understood trauma at a young age. Someone was watching out for me on my journey to be given this opportunity and gift of friendship that I hold near and dear to my heart to this day and some whom I’m still friends with today.

What I also was given from the gift of these 2 very different worlds and experiences was insight.

Years later I would come across Brene Brown’s books and work, especially on the topic of shame. Her insight helped me put into better words and understanding my own identification with the energy of shame. She refers to shame as the “intensely painful feeling or experience of believing that we are flawed and therefore unworthy of love and belonging.”

In 2022 there were approximately 20 million new cancer cases! For TBI it is approximately 2.8 million a year. That’s a big difference! Both very alarming numbers and far too many for each category and neither I wish on anyone!

However, the reality is you can ask anyone to list multiple people they know with a cancer diagnosis, and they easily would. But not TBI. I believe strongly that it isn’t just about the number of people being less, but it is also a diagnosis many would rather not disclose. And often don’t. For that very reason – shame.

There’s no black and white answer to that, but I can tell you that once you peel away the many layers, there is most likely a shame element to it.

And because it’s invisible to see, it’s also very easy to hide.

In my 30 years of living with a TBI, I have come far in owning that and not letting shame keep it as something to hide. But did I have moments where I tried my hardest to hide it? You bet I did. And I still have moments of catching myself not speaking up on behalf of it or choosing not to share. Yes, there are moments where I purposefully don’t share it. If it doesn’t need to be known, there’s no reason to share it, but there definitely have been times when I hesitated to be honest about it due to the shame emotion.

TBI is a different journey because of what it impacts in a person and because of the permanence of it, which is sometimes a tough pill to swallow and reality that is a never-ending journey of finding peace and acceptance with. There’s no finish line to peace and acceptance, it’s a practice. On-going.

Even as a young teenager and new to the TBI journey, I had an innate knowing of that shame feeling, without even knowing or understanding that it was shame...but when I first went back to school after returning from the hospital for the TBI, I learned quickly that I had to write everything down that I needed to remember because I would go home and forget everything I had just been taught, and the homework assignments I had to complete. This was before they had the school planners that became popular. But I also was stubborn and refused for some time to have a planner because what that did was put a big label on my head that I was different and had a TBI. I did everything I possibly could to hide from it, so I decided I would write down my assignments on my arm! Ha! No joke. I would have notes written up my arms for some time! Then I learned the hard lesson that ink rubs off when you wash your hands and I would miss an assignment. Whoops! I finally caved into that planner system and now it’s my entire lifeline. Something I will share more about in a future blog post when I talk about my compensatory skills and how I live today with the TBI.

Interestingly enough, when I started losing my hair from the chemo, that was less of an emotional shock and challenge as a teen because then people could SEE that I was sick and there would be a greater understanding from others of me going through something challenging. Empathy was given more if you could see something was wrong. In some ways, it was a sigh of relief that I had a visible sign to show others there was a need for greater empathy.

It wasn’t by any means intentional by anyone or any circumstance itself on my journey, but looking back in those teen years, the TBI chapter was a lot of “darkness,” so to speak, and the cancer chapter was ironically filled with so much life and hope and inspiration. Definitely something that I needed in that year following the TBI and something I do consider a gift of opportunity and Blessing in my life that I needed at that time.

I didn’t have a real “understanding” of this in those young teen years. Did I have an intuitive sense of the differences? Yes. But I was too young to fully grasp these two very different worlds and realities until later in life.

As I said already, there’s no “better” or “worse” in the two different paths, just like there’s no ranking of anyone’s journey, but I wanted to share this especially for anyone who is living with an invisible diagnosis of any kind. I get it.

And whatever your story is, it matters and YOU ARE SEEN!

The healing, the learning, the growing never ends….

But I hope from reading this you can be reminded from it that we don’t know what anyone else is going through. Especially the invisible circumstances of life – not just diagnosis, but any form of trauma, pain, loss, grief, etc. Diagnosis or not, the human experience alone is a journey of both joy and sorrow. Be kind. Be patient. Be empathetic to each person’s journey.

Thanks for reading.

Continue to Love well, Live well & keep surrendering to the zest of life ... ;)

~ Jen