My Journey with Arteriovenous Malformation (AVM)

I’ll start with a straightforward medical fact: an Arteriovenous Malformation (AVM) can show up in many different places in the body. Mine just happened to be in the back of my brain, near my cerebellum. An AVM is essentially a jumbled mess of veins that get tangled. Over the years, pressure builds, and one of the vessel walls gets pushed out until it breaks. I’m not going to mess with the technical terms—I’m just telling my story. But when an AVM ruptures and causes damage, what you’re left with is a traumatic brain injury (TBI). In my case, there was damage. Extensive damage.

The Worst Headache of My Life

The day everything changed was December 10th, 2003. I was in Connecticut, living with my girlfriend at the time, just going to bed and trying to fall asleep. All I remember is getting the absolute worst headache of my life. My ex-girlfriend’s brother had to call 911. The only thing I remember is being taken down the stairs, and then the chaos of the emergency ride. The next thing that sticks in my memory is hearing the flatline... and then falling asleep. I don’t think I was out for very long, because obviously, I’m still here and writing this. I found out later that I got to take a nice helicopter ride to Yale Medical Center. It’s too bad I don’t remember my only time in a helicopter.

The Erasure of Time

The next few weeks are largely blank. There were no warning signs about the AVM throughout my entire life; it's just one of those things that just happened. And it completely changed my life. I was in an induced coma for a week or two while the surgeons did their work. They cut the back of my head open, removed some bone from around my brainstem, removed part of my cerebellum, a tiny bit of my actual brain, and cut the clot out. I only have tiny, disorienting glimpses of my time in the hospital, which stretched out for about a month and a half. My immediate family was there, and some close friends went to visit me, but I don’t remember any of that love and support. My parents told me I was incredibly rude to the nurses sometimes—I guess they understood that it’s normal for brain injury patients to act that way. Unfortunately, I do remember the indignity of having a catheter in my wee-wee for weeks, and the pain of when they finally pulled it out. Not pleasant.

Learning How to Live Again

When the physical therapy started, it was brutal. All of my muscles had atrophied. I couldn’t walk or stand very well. I had dropped from 200 lbs down to a skeletal 135 lbs. Life was not good at this point. I can’t truly describe the feeling of losing all basic functions: not being able to walk, stand up, turn my head, eat food, or go to the bathroom by myself. I remember glimpses of throwing up a lot after they tried to get me to start eating solid-ish food again, probably because the physical therapists were pushing me too hard. There was no modesty or privacy left. I have no idea if the nurses even brushed my teeth or if I took a shower. I’m glad I don’t remember that, either. After what felt like forever—once the 20 or 30 staples were removed from the back of my head, I managed to go to the bathroom on my own, and I was conscious and coherent—they let me go home finally.

The Weirdest Feeling

And that’s where the memories just stop. I still don’t remember at what point I knew my old life was essentially gone. I don’t know what kept me going through those first dark, challenging months. The strangest feeling of all is that I have no recollection of waking up. None. I think that is the weirdest part of my entire journey: not consciously knowing when I opened my eyes and rejoined the world. But I did wake up. And even though my old life is gone, I am here, writing this blog, and moving forward.

Reflecting on My Journey

As I reflect on my journey, I realize how much I have learned. The experience has taught me resilience. I have faced challenges that I never thought I would encounter. I have learned to appreciate the little things in life. Each day is a new opportunity to grow and adapt.

The Role of Support Systems

Support systems play a crucial role in recovery. Family and friends provided me with the encouragement I needed. Their presence made a significant difference during my darkest days. I encourage anyone going through a similar situation to lean on their support systems. They can help you navigate the challenges ahead.

Embracing Change

Change is often difficult, but it can lead to growth. I have had to adapt to a new way of living. This journey has pushed me to explore new interests and passions. I have discovered a love for photography, particularly aerial photography. The perspective from above offers a unique view of the world. It has become a way for me to express myself and share my story.

Moving Forward

Moving forward is essential. I have learned to set small, achievable goals. Each accomplishment, no matter how minor, is a step in the right direction. I focus on what I can do rather than what I cannot. This mindset has helped me regain my confidence.

What was your biggest challenge after a life-altering medical event? Share your thoughts and support in the comments below.