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I Didn’t Know My Brain Could Bleed: Coping With a Cavernous Angioma Diagnosis

At 27, I thought I was at the pinnacle of health. I went to the gym every morning before work, climbed the stairs whenever possible, and played outside with my 5-year-old son every evening. Then, one day, I felt sick and started to experience tingling in my face and arms. I started losing my balance and throwing up. A nurse told me over the phone that it sounded like I was having a stroke, which I told her was impossible, given my age and healthy lifestyle. As a precaution, I drove myself to the hospital (and parked far from the entrance, my typical strategy to get in some extra steps). But I was stumbling and had to grasp the walls to make it into the ER.

This is how I discovered cavernous angioma. I am now 53, and have survived two brain surgeries, a seizure during childbirth, a stroke, and partial paralysis. My purpose in writing today is not to throw myself a pity party or give you a play-by-play of my ordeal. Instead, I want to share how my faith and great support from family, friends and co-workers, as well as my involvement in research through the Cavernous Angioma Registry, has pushed me to overcome a grim diagnosis and make the most of my situation.

But first, you may be wondering what the heck cavernous angioma is. It’s a relatively unknown condition that causes mulberry-shaped abnormal blood vessels with thin, leaky walls to bleed within the brain or spinal cord, causing seizures, neurological deficits, and more. Approximately one out of every 500 people has at least one cavernous angioma, but only some are actually affected by the disease. For at least 20 percent of those with the illness, including me, cavernous angioma is caused by a hereditary genetic mutation.

Being told that you may not wake up from a risky brain surgery, or that you’re never going to walk again without a cane can be seriously detrimental to a person’s mental health. As someone who ran four miles a day, I couldn’t imagine not being able to walk on my own. But I have learned through this tumultuous journey that a person’s strength, determination, and support system can make a world of difference.

Faith has played a vital role in my ability to stay positive. I was very blessed that the first day I ended up at the hospital, there happened to be a neurosurgeon on call who was studying the genetic mutation of cavernous angioma, at a time when very little was known in the medical community. So, I was diagnosed quickly, which is usually not the case for this disease. Before my surgery, my doctor told me the angioma was in a very dangerous place and I might not survive. I told him I believed in God. When the surgery was over, he said, “I think you were right about God. You came out with almost no deficits.” Within six months, after lots of hard work in physical therapy, I was working, driving, and even running again.

My strong support system was absolutely crucial. I work for the University of New Mexico Foundation and have had several brain bleeds while on the job — one time right before a major event that I was overseeing for 250 people. My coworker saw that my face was white, and I was holding onto the wall, and immediately said, “Give me your notebook, and get to the hospital. We can handle this.” That was 16 years after my first brain surgery, and this time I was in the hospital and rehab for 49 days. My co-workers, friends, and family came to see me regularly to raise my spirits.

This recovery was extremely difficult. I had been intubated and my vocal chords were paralyzed. I had to relearn how to walk, talk, and eat. I went to live with my sister, who showered me with tough love. She had me do laps in her yard with my walker, with her French poodle nudging me to keep walking. She had me practice my vowels to get my speech back and use a typewriter to get mobility back in my hands.

I wouldn’t be where I am today without my love for exercise. We always read about the benefits of fitness, and my story proves it. After my first brain surgery, a friend took me to water aerobics to help build my strength and get me back to walking and running. After my second surgery, my physical therapist wanted me to use a walker. I refused and used a cane, and then one day showed up without the cane. She said I wasn’t strong enough, but I was determined to walk on my own. Now I am back in the gym every day, using the treadmill, although I still have to hold on to the sides. I also went back to college to help exercise my brain. My foundation of exercise and hard work has given my body and mind the strength I’ve needed to endure the seemingly impossible.

And finally, my participation in research has helped me become part of something that’s bigger than myself and has given me a sense of community. Through my involvement with the Angioma Alliance, I joined the Cavernous Angioma Registry, an online registry to help connect patients to research, support clinical trial recruitment, and expedite the fight for a cure. The registry also offers subsidized genetic testing for families, which was very helpful for my sons, who thankfully did not inherit the mutation. Becoming part of the Angioma Alliance community, connecting with others who share my experiences, and contributing to research to try to find a treatment or cure has been deeply meaningful and has given me a renewed sense of hope for the future.

For others who have debilitating illnesses, I leave you with this: You are stronger than you think. But you can’t do it alone. Let the powers of faith and community propel you to be the best possible version of yourself.

Lead photo courtesy of Pexels