Portrait: Tracye

A little bit about Tracye

On December 7, 2004, I was 34 years young, strong and very healthy. While I was riding my horse, I suffered a subarachnoid hemorrhage (SAH). I remember cantering and all of a sudden feeling like I was going to pass out. And just like that...I did. I fell off the horse (who I was told stood over me), landed on the back of my neck and fractured the bottom of my skull. I was completely flatlined. I was lucky to be surrounded by individuals who were able to perform CPR and resuscitate me while they waited for the life-flight to land, as I was out in the country.

When I woke up, I knew something was horribly wrong. 

The pain was excruciating, and I was vomiting non-stop. The doctor came in and told me I had had a brain aneurysm. I remember thinking whhaaattttt?!?!?! - like the kind you die from?!! Yes, that kind. The aneurysm was in the front lobe, they had limited time to operate, and it was decided that I was a good candidate for coiling.

My initial recovery 

Recovery was both emotionally and physically challenging. Just like most patients that suffer from a SAH, I spent 3-4 weeks in ICU. Even at my young age, it took a toll on my body. The anxiety was sometimes debilitating. I didn’t want to die. Every sneeze, cough, headache, I was scared. Could I ride a rollercoaster? Do a headstand? Workout the same? Get back on the horse? 

But time went on and years went by and the horror of that experience faded and sometimes I even forgot I’d had it. Life simply went on. 

Experiencing a reoccurrence 

Fast forward to 2019. I wasn’t feeling well. I was exhausted all the time, my blood pressure was high, and I simply felt that something wasn’t right. To make a very long story as short as possible, I decided to go to the ER because I just didn’t feel right. Because I was an aneurysm patient, the first thing they did was a CT scan and everything checked out. Coil looked good and no new aneurysms. They ran some other tests and sent me home. But I still didn’t feel right. I ended up going back to the ER three more times. They put me on a treadmill, ran cancer tests, and did imaging on my stomach. Nothing. But, they did not do an MRI/MRA or angiogram.

Finally, they just put me on blood pressure medicine and sent me home. Then, on December 7, 2019, I was riding my horse again and felt like I was getting sucked out of this vortex. And I knew I was having a SAH. This time, I didn’t lose consciousness. I was rushed into emergency surgery. This time, I was at peace. I knew I might die and that we are not our bodies. They coiled me again, but unfortunately, I re-bled and had a stroke. They ultimately did another surgery and added more coils and a stent.

What needs to improve 

Surviving a brain hemorrhage is nothing short of horrific. Seventeen years apart and having to experience the recovery again with an older body, was unbearable. Nothing made sense to me. I didn’t learn or understand that it was my original aneurysm that re-bled and not a new one until I was home and coherent. 

You can imagine my shock and anger. Why did no one explain this to me?  

I switched to a completely new neuro team at a different hospital and immediately sought answers. They said the hospital that I went to didn’t use 3D imaging. Had they done the right assessments, they would have seen that my original aneurysm was leaking. While I would have had to have brain surgery, I would have avoided another SAH – which is often deadly.

Approaching recovery differently 

I don’t know how I recovered, but I did. I pulled myself together even when I didn’t think that I could. I had to go very deep inside and make a decision because I would never wish this experience on any other human. I had to take my recovery into my own hands. Once they fix you, there are a whole host of issues and you are on your own. I surrounded myself with the right team: a naturopath, sleep doctor, acupuncturist, cranial sacral therapist, spiritual group, Lagree studio, yoga studio, and incredible friends and family. I chose not to learn the results of my Neuropsychology tests and instead created my own brain games. Some days I’d walk around the block, some days I could not.

After almost a month in ICU, I would have told you I’d never ride again but with perseverance, 4 months later, I got back on my horse who is my zen and part of my care team! So many lessons learned about our medical care and system and advocating for yourself, as well as the importance of taking your recovery into your own hands.

My biggest challenges today are my neuro-fatigue and my body battery. I’m just never fully charged. It’s an invisible disability and people, including my good friends, just assume because I look normal and sound normal, that I am normal. But, I’m not. So that feels lonely and frustrating at times. I don’t want pity, but I also don’t want to constantly explain why I’m tired. Another challenge is not having others that I can talk to who have been through something similar. It’s lonely. But I’d love nothing more than to befriend some other survivors or help others going through something similar.