I was a participant in a national meeting on diversity and inclusion - where I had the honor of being the national representative for those at the firm with disabilities. At the conclusion of the meeting, our sponsoring partner passed around a bowl of key-chains. We were told to pick, without looking, one of them, and then tell the group what it said. The thought, the partner told us, was that this key-chain was choosing us - not the other way around.
When it got to my turn, I lifted the key-chain up and it said, on one side, "I am..." and on the other, "...fearless." When I told this to my group, there were smiles all around and murmurs of approval from my co-workers. Yes, they all affirmed, you are fearless. Someone went on to explain that they thought that what I was doing - being public with my epilepsy, was truly courageous. At a firm where the culture, in part, measured success based on how many hours you could work, and had a frenetic pace, my epilepsy was often seen as an impediment to success. My epilepsy physically and mentally got in the way of how well I could complete my work duties. The belief of my coworkers that what I was doing in giving voice to others who had similar challenges facing them, gave me hope and sustained me.
Yet, that label of believing I am fearless has not always stood the test of time, or my epilepsy journey...
Not always braveThe truth is that I don't always feel brave. With every successive seizure I've had, I feel more an more crippled by fear. Fear of how long my recovery will take. Fear of how I will help support my husband and child. Fear of whether or not my work will accept me as I am. Fear of when and how the next one will strike. And fear, to be honest of death.
After my most recent seizure the last fear felt especially close. Part of that was due to the situation around my seizure. I fell to the street, hit my head, and was bleeding a lot. The EMS crew called was worried that I had fractured my skull, and so I was whisked to a hospital trauma center. I was slowly coming to as I remember being wheeled into the ER, where all of a sudden over a dozen medical professionals surrounded me, asking me questions, and even cutting off my clothes. I vaguely remember asking if I was dying, and if I could get a priest. While my injuries were no more serious than a concussion and some severe post-ictal symptoms, I've never been so fearful as a result of a seizure before. The fear stayed with me, and with those closest to me.
Dealing with the fear of othersSince the latest seizure six months ago, fear of another seizure has become a constant companion. It is never paralyzing... rather just always there besides me, like a shadow. Part of that was this past seizure was not predicated by my typical trigger of stress. In fact, my life since I changed career fields has been the healthiest (and happiest) I've been. The uncertainty has plagued me and those I love. In the months since, anytime I've felt odd, or any time I made a silly noise, or act even slightly odd (joking around with my toddler, for instance), those near me jump and come running to see if I am ok. Even my daughter, who witnessed the latest seizure will, out of the blue, ask me why I fell down in the street. Or, lovingly, when she hears my alarm for my medication, remind me to "Take your medicine, Mommy."
While I am so blessed to have people around me who love me, it does sometimes cause me to fear and to doubt myself. In past entries for this blog, I have written about how I haven't let epilepsy stop me - and the wonderful and amazing things I've done in the interim.
Yet, now, I have more to live for than myself. I have a loving partner, beautiful daughter, and God-willing, another one joining our family over the summer. They, quite literally, depend on me staying safe and healthy in order for their own well-being. That fear of leaving them - even not being able to participate in their lives as normal, can be a cause of fear.
But fear, I've learned, also has a cousin...
Determined not to let fear get the better of me
As I've been working through my fear (not alone - and sometimes with the help of many wonderful professionals, family and friends), I've come to recognize that fear actually has a cousin - the other side of the coin, if you will. Its name is determination. I think determination blossoms not in denying that fear exists, but that we recognize it, look it in the face, and get on with the business of living. Just writing this gives me strength, and hope (OK, I'll admit it - a Game of Thrones quote of "not today," comes to mind, as does Roosevelt's stirring line, "The only thing we have to fear, is fear itself." I can't help it!).
So what to do if you are fearful? The first is to name it for what it is. Write your fears down in a journal, share them with a friend, a minister, a therapist, or other person whom you trust. Sometimes saying the fear out loud makes it not so scary.
Second is talk to your neurologist or doctor. Some of these meds we're all on can do a number on your emotions. Neurologists are used to this and could help you find ways to combat the side effects of medication, or can work with you on dosage or types of medication you are on. It doesn't hurt to at least ask.
Third, I find that doing something small every day that helps you to regain courage is helpful. If you have more severe epilepsy - it could be as small as getting up and ready, or taking a walk around the block. For me, it means going on my first solo business trip in years. Am I scared and nervous? Yes - but I know that doing this will be a good step for me.
Last, believe in yourself. A therapist a number of years ago really helped me put this all in perspective. That yes, I do have epilepsy, and yes there are things that could happen to me as a result of seizures that don't happen to others. Yet, life itself is a huge gamble. And life contains risks. That doesn't stop others from walking out their front door. Even on days when I am fearful, I remember this... fear doesn't mean you lack courage. It means you face the day with even more bravery than the average person. And so, I head out the door, my head held high, my hands on my key-chain that proclaims what is in my heart... that I am... fearless.