How do you cope when the uncontrollable happens to you?
by Summer Brown
I was faced with this exact question back on February 8th, 2016 when Dr. Carlos David, a neurosurgeon at Lahey Hospital in Burlington MA, entered my hospital room and told me that I had two choices regarding the cavernous malformation they had just located in my brainstem one day prior. “If you leave it alone, it will likely decrease in swelling and the symptoms will go away, but every year there is a 25% chance it will return and with the location and size of this mass currently the next episode will likely leave you paralyzed or kill you!” Well, ok! Option #2 must be better? He continued on, “If we remove it now, while it is close to the surface and angry, you are likely to never have another episode. But the brainstem is the vessel where ALL of your functions (such as breathing and blood pressure) translate from your brain to your body. Your particular location is less than ideal. There is no way to predict what functions you will lose with this surgery. Our largest concern is the loss in ability to swallow. Your mass is wrapped around the vessels that give you this ability.” Well, that doesn’t sound fun either! I asked, “Is there a third option?” knowing the answer…but hoping!
Time was of the essence. We had to make a move. Now or never! 7am February 9th, 2016 was going to be a day I will never forget. I sat back as tears filled my eyes. Not tears of fear for the surgery, but rather for the thought of my, then, 8-year-old son, to whom I was the primary caregiver. He needed me. We NEEDED to share so many more memories. We had many daily routines we shared. We walked or biked to and from school every single day - sleet, rain, snow or sunshine. I had pushed him in a jogger stroller in many local 5K races and he had finally started running these races using his strong, little body. We had dance parties and movie nights. I cherished the life I had built. I was in a wonderful space mentally and physically and I was raising one, amazing human being. I owned two, thriving businesses with clients lined-up for months. I was at the peak of my physical fitness and running between 120-150 miles per month. I was sharing life with a wonderful man who embraced and supported every ounce of me and to whom I loved deeply. But…would I be able to accomplish any of these things after this surgery?
Life can be filled with decisions, some uncontrollable; unimaginable even. Decisions you hope you are never faced with and possibly even decisions that you have no idea what the outcome will be. Tough decisions. In speaking about my personal experience with the physical and mental challenges of my brainstem surgery, I have realized that many of us have been faced with an “uncontrollable” decision (or two) in life. Situations can vary from one-time events, such as a change in careers, car accident or, in my case, a sudden surgery, to life-long challenges like a sick child, addiction, chronic and/or mental illness (as examples)! You will notice how I use the term “uncontrollable” and “decision” together. Not two words people would usually put together. A decision typically refers to having options. "Uncontrollable" means happening or done without being stopped. I often put these two words together and think of my great mentor and overall amazing human being Randy Pierce (I’ll wait while you Google him).
“Randy Pierce was on top of the world, 22 years old, fresh out of college and thriving at an excellent job. His promising future seemed certain. Then, in just two short and devastating weeks, an unexpected neurological disorder plunged him into blindness.” If you have ever had an uncontrollable decision happen to you, and you have not spoken to Mr. Pierce or read his book See You at the Summit (have tissues), YOU SHOULD! He has shared many personal experiences about his journey in his motivational speaking gigs and, in my opinion, has many words of wisdom. The one that rang in my ear every single day during my 10-day hospital stay, my 6-week journey in 24-hour a day rehab, and still rings in my ear today is this…"Life is 10% what happens to you and 90% how you react to it!" This is why I connect “uncontrollable” and “decisions” together. We cannot always control what happens to you, but you can decide how you react to what is happening!
In the weeks following my surgery, I started taking inventory of the functions I had lost. I was able, while in the PICU immediately following my surgery, to write my mom a note that said “Hi Mom." I was not able to speak at that time, and thankfully had not lost the ability to swallow so with hydration, and many popsicles, my voice would return. My mom had slept in the waiting room the whole night waiting for updates from my surgeon and rarely left my side. As a mom I did not envy her position. I needed her to know that I was OK!
Among the list was significant blurry vision and the ability to walk. Yes, I had to learn how to walk again, let alone jog or run. The surgery created a barrier between my brain and the left side of my body (from my neck to my toes). Not only did my brain not think the left side existed, it also had minimal function and suffered about 90% muscle and neurological atrophy. All the while, the right side of my body felt no sensation in the first few layers of dermis so I could not feel any temperature such as ice, heat, sharp or dull objects. This side also had burning sensations that made me want to crawl out of my skin. They would often wake me every hour and have me to a series of tests which included sticking out my tongue, smiling and holding my arms out horizontally and trying to touch my nose with each pointer finger. I always epically failed with my left side. I actually tried applying deodorant with my left hand to my right armpit and literally hit my mouth with the stick so hard that I was flossing deodorant out of my teeth! WTH right? My brain knew what it needed to do, but that path to connect the two were gone. It was frightening at the time, but surely funny now.
And don’t even get me going about the “peg test!” Grrrr. Many frustrating moments of realizations. My voice had dropped an octave or two and was very weak! When my brother, Shawn (affectionally known as Monocle Jackson), would call to check on me and I would always answer the phone singing an Adele song! Gotta make light in a dark situation, right? The fatigue and physical pain were nothing I could ever describe nor wish upon my worst enemy. Crazy fact about brainstem surgery? They cannot give you any medications that will inhibit your brain respecters because it could mask a complication you may be having from the surgery. But you know what they can give you? TYLENOL!!!!!! Freaking Tylenol. I cannot tell you the number of times I swore in this process. And cried. It was healing and necessary!
The deficits of this surgery are still present in my everyday life. My balance and equilibrium are, at times, more like a 1-year-old learning how to walk. Part of my career as a residential house painter had me up on stilts for many of my jobs. I have compensated for this deficit by purchasing two sturdy ladders that allow me to safely cut high points. I have to be very mindful when using my stilts now, where as those were a key tool in my tool box, so to speak, before surgery. Efficiency is key when you are self-employed. I use to have cat-like reflexes and could traverse a mountain bike with grace and ease through single-track adventures. Now I struggle on car-width railroad beds with the ultimate challenge being looking behind me, while peddling, for fellow cyclist or even cars. My depth perception is skewed and has yet to return. This deficit affects my ability to hike because rocks, roots and snow are perceived as flat, when they likely are not. I have nystagmus in both eyes. Nystagmus is “an involuntary eye movement which may cause the eye to rapidly move from side to side, up and down or in circles, and may slightly blur vision.” My eyes are constantly compensating to the moving world around me. And if I am being honest, it is completely exhausting by the end of each day. It took me four months to try and drive again after surgery. This surgery created a loss of independence for me in so many ways.
I felt very fortunate that I did not lose any cognitive ability. My speech was good. My memory was strong! I was, when I was well-rested, able to hold a conversation with friends or family with awareness and fluency. Those conversations were what carried me through my darkest days!
I could barely care for myself, let alone my son, although too stubborn at times to ask for or accept help. Asking for help can be really hard. You may think you can muscle through a situation. It will go away right? Tomorrow is a new day. Asking for help can be viewed as admitting defeat. I fully understand this thought process, but I will also stand here today and say that IT DOES NOT! Erase that idea because life only gets better when you ask for help. Asking for help, in any nature, is not admitting defeat - it is opening your heart to another human being that you trust. Sounds scary right? But damn it feels so good when you open your beautiful heart and let others in. Ever heard the expression “We are only human?" We are not perfect. None of us are and none of us will ever be. We need to support and be supported. That is truly the nature of us as human beings. Don’t fight nature. Accept support when you need it. Lend it for others. The world is better when we all open our hearts.
I often use the word “challenges” when referring to a situation that warrants perspective taking. I find this word to be much more empowering than “struggles.” When using the two, in the past, I felt a sense of strength when referring to situations as a “challenge” rather than “struggle.” Struggle brought weakness to my heart and I had no room for such a feeling.
When reflecting back on challenges, it can be very telling about where you are today. How did I cope when the uncontrollable happened to me? I started by opening my heart to my family, my friends, and my community. My blogging boyfriend candidly and lovingly shared my challenges and successes, daily, in the days and weeks to follow my surgery.
You never truly realized how much you are loved until something of this size happens. I would receive dozens of messages of encouragement and love daily. Food trains filled my belly for months following my surgery. Understanding clients waited patiently until I could get back to work again. A community came together and raised over $20,000 in under 2 weeks, allowing me the time I needed away from my businesses to properly heal while still providing for my family. I am eternally grateful (and have tears running down my face as I type this) for the love my family, friends, and community showed my family and me when I truly needed it most. Truthfully, five years later, I am still at a loss of words to express my gratitude.
My sudden health issue wreaked sudden and long-term havoc on my life. I had to assess if the businesses that I had been building for 16 years would still be sustainable in my new body, or if I was going to have to think about what I wanted to be, again, when I grew up? I do feel it important, however, to share the silver linings in my journey…and there are actually many of them. Before surgery, I was often referred to as “super human." I was a go-getter and I was able to accomplish nearly every goal I put my mind to. My brain and body always moved at record speeds. I was always “doing." After surgery, this was not an option. Thankfully my brain slowed down with my body so the desire to move was not burning. That was a gift. If my brain had still felt like the old me with the body of the new me that truly would have been a challenge. And how about this for a highlight reel? While I was in rehab, I MADE THE COVER OF THE NASHUA TELEGRAPH!! Celebrity status? Heck yah! All the other patients and I (who I junior by about 30 years) sat at breakfast and spoke about our individual journeys. It also made for fun conversations at my therapies in the days to follow, as they got to see a picture of my son and I at a local 5K race dressed as superheroes!
My boyfriend was nothing short of AMAZING in this journey; pivotal, in fact. He was the only person who would, bring me my favorite puffy coat, hat, and mittens, push me outside in my wheel chair on cold February nights, and actually sit out there with me the whole time as we stared at the stars, taking deep breathes of fresh air. We shared the most intimate of conversations. Conversations that involved uncontrollable laughter and endless tears. Conversations that likely would have never taken place had we not been given this time together. Time that doesn’t just happen in daily living. This kind of time is yet another gift of the challenges we were dealt. It was the kind of time that slowed us both down to appreciate each other, the simplicity and fragility of life and the ways we wanted to continue on in this world together. Oh, did I happen to tell you that he asked me to be his wife five days after my surgery? Yup…do the math, February 14th, 2016 at 7:30am (my birthday is 7/30) he asked me if I would marry him!!!! Yup. My response…”WHATTTTT?” recalling that I don’t think I hadn’t brushed my teeth in five days and I knew I hadn’t showered. And this guy was asking me to marry him (and after emptying my bed pan no less)? Holy cow! I THOUGHT I WON THE LOTTERY!! "YES" I said yes, of course!
My son, Ronan, the gifts with him are endless. You see, the night before my surgery his dad brought him to the hospital to see me. Luckily, I was looking very much like myself. We had a wonderful visit, playing board games in my bed and taking short walks. I walked him to the elevator when visiting hours were done. It was a highly emotional time as he knew I was having surgery the following day, but had no idea what was about to happen to his mom, and neither did I. I held my emotions close to my heart while in his presence, but when those elevator doors closed, I fell to my knee and cried like I never had before. After taking a few moments to gather myself I walked to the nurse's station and asked for a pen and paper. There I sat, for nearly two and a half hours, feverishly writing a letter to him. What do you write to the person you love most on this Earth in case you are not able speak to him, or maybe even see him again? Every emotion came through that pen. Once I felt I had covered all of the big things, I sealed the pages in a Lahey Hospital envelope and labeled it:
To: My Ronan
Love: Your mom ALWAYS
I walked up to Chris, my boyfriend at the time, and asked him to hold this letter for me. I gave no other instructions. He knew. What is the greatest silver lining of my whole story? Upon returning home after surgery and rehab, Chris handed me the sealed envelope. I might have lost much physical ability and been in a heap of pain, BUT MY SON NEVER HAD TO OPEN THAT ENVELOPE!!! Mission accomplished!
Truth be told, many of you reading this have been in my shoes. An “uncontrollable” has happened to you. It has shaped you into the person you are today. You might empathize more with a friend who losses a parent if you have lost a parent. You might have the right words as a neighbor who is about to start cancer treatment since you just celebrated five years cancer-free. You might make a meal for a family down on their luck, expecting nothing in return, because you, too, had lost a job and could not feed your family. You have persevered and overcome.
If you have been fortunate enough to not have been in these shoes, always remember if the uncontrollable happens to you…WE WILL BE HERE - your neighbor, your cousin, a fellow worshipper at your church, ME! You are never alone. Many of us understand and want to support and love you as that was what got us to where we are today. If you are being challenged now, or you are challenged in the future, know you are NOT alone. Although your circumstances may vary from mine, and our situations may look different, our hearts likely feel the same. We all feel pain, fear, and sadness. Close your eyes and open you heart.
Don’t be afraid to talk about your challenges. Talking about them makes YOU STRONGER! Aside from having an amazing network of people around me during my recovery (which has spanned nearly to this very day), talking out my feelings of what was happening to me was a HUGE part of my recovery. Properly grieving and then recognizing and accepting the help enabled me to be who I am today. Allowing people to see your heart empowers others too.
In a world that seems at a loss of understanding, compassion, and love..BE THE CHANGE. If you have had to cope, embrace a fellow human being who needs you today. If you are challenged today, tomorrow or next week please talk about it. While the news, most recently, may show a world divided, I can tell you firsthand that they are wrong. When opinions are put aside, we lead with our hearts. So many people who make up this world are loving, compassionate and sympathetic. Open yourself, embrace it and love!