In 2011, I was a 22 year old college student home for winter break and perfectly healthy, or so I thought. One winter’s day, I experienced a very random and unexpected brain bleed. After hours of testing and confused doctors, it was identified that I had a rare brain disease called Cavernous Malformation. Say what? In a nutshell, it is a cluster of weak blood vessels that can leak or rupture blood into the brain. The doctors believed I was born with this lesion and there was nothing they could do but monitor it. It was located in the most delicate place of my brain; my brain stem. Well, that sucks!
Since it is a rare condition, there is no known medical treatment effective in stopping these lesions from bleeding. So I went on living my life as best I could. I was back at college and riding horses, but in constant fear of another brain bleed. I was fortunate enough to have found an online community, Angioma Alliance, who hosted people from all over the world with this condition. Their insight and shared frustrations on the unfairness of this diagnosis were so immensely comforting. I was not alone.
I was blessed with supportive parents who took me to get second opinions from different neurosurgeons. The unfortunate part was they all said the same thing; my lesion was too dangerous to remove surgically. I just had to learn to live with it. Easy for them to say, huh?!
Over the course of the next year after my diagnosis, I had five brain bleeds. The fifth bleed was a massive one and paralyzed the entire left side of my body and almost killed me.
It was then that my neurosurgeon knew he had to perform brain surgery to remove the Cavernous Malformation that was destroying my life. That brain surgery was successful in removing my lesion but I was left with physical deficits that would change my life, as I knew it.
Yes, I briefly gave you the background of story. You will have to read my book to get the full details and more in-depth insight to what I was going through during one of the darkest periods of my life. In addition, I wanted time to explain how you can use parts of my story to get through the current crisis that is known as COVID 19. How?
Well, much like COVID 19, my diagnosis was full of anxiety and uncertainties.
1) I had almost zero control over what was happening and what would happen as the outcome. It is immeasurably hard to have no control over our lives, but we must accept it and find a way to push forward. I found two things very helpful during my period of no control back then and use it during this pandemic. One, I focused on my faith in God. He is in complete control and I can find comfort in trusting in Him. Two, I turned my attention to things I could control. I started running and focusing on my horseback riding. Since I cannot physically do those things in this current crisis, I am walking daily and starting this blog to help others!
2) My life changed forever, against my will. After my stroke and brain surgery, I was paralyzed on my left side. After months of hard work, I was able to regain the ability to walk but still have zero functional use of my left hand (8 years later). I have lost the ability to continue my passion of riding horses and running. I even miss doing small mundane things such as clapping, tying my own shoes, or pulling my hair back. I often refer to it as “living one handed in a two handed world”. I am not here to gain sympathy or pity but to illustrate how much my life has changed by something that was completely out of my control. COVID 19 has changed your life and you probably are sad about it and missing things like seeing your friends, going to restaurants, or getting your hair done. What can you do? Nothing! Unfortunately, like my stroke, COVID 19 is out of our control. The only thing you can do is decide how you are going to react to it. Option A, you become depressed and lock your doors, crawl in bed, and never come out again. Option B, you adapt to these uncontrollable circumstances and make the best of it! I sincerely hope you choose Option B. You can learn to enjoy the beauty in the crisis. The beauty that is found in appreciating those long walks outside that you never truly enjoyed before. The beauty in the excitement you get when you see a missed loved ones face pop up on your FaceTime call. The point is, there is beauty all around us, even in the ugly uncontrollable crisis. You may not control the crisis, but you control how you react to it!
I hope you gained at least a fragment of hope/inspiration to help you through these difficult times we face. Much like I found in the online group Angioma Alliance, I hope you find comfort in knowing you are not alone in this. May God bless you and this entire planet!
I wrote a book all about overcoming life’s hard times. Please visit my website: https://heatherheadstrong.com/