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Embracing Uncertainty: Insights From a Case Manager at Epilepsy Alliance Florida

By Beatriz O.


EMBRACING UNCERTAINTY

I’ve been a case manager at Epilepsy Alliance Florida for the past two years. My job, more like my calling, is to provide my clients with social services and support through the epilepsy support groups that I facilitate. In doing so, I learn a lot about my clients’ experiences with epilepsy. They are the real experts on this not-so-well-understood disease. I stand on the periphery – looking in, taking notes, and figuring out new ways to serve them. I’m on the periphery because I don’t know what it’s really like to experience the disease.

People with epilepsy are more than capable of doing most things anyone else can do, despite limitations such as driving restrictions, performing certain tasks, or going to certain places. My son’s best friend, Jacob, has epilepsy. He works daily as a content creator and practices jiu-jitsu. He gets his medical checkups, takes his medications, avoids triggering events, and takes care of his sleep and general health. He enjoys life and doesn’t let his epilepsy dampen his spirits or define him And yet, though many people with epilepsy manage day-to-day living without many limitations at all, some don’t or do so only some of the time. This is due to the unpredictable nature of epileptic seizures, which can cause a lot of worry. What I’ve gathered from my clients is that their greatest concern is not knowing when their brain is going to misfire. In the words of one client, “Had I known the seizure was going to happen while I was dancing in the middle of the dance floor that day, I would’ve gone dancing another day.”

EPILEPSY AND UNCERTAINTY

When will a seizure happen? When will it happen again? Will it happen again? If only we had a crystal ball to know these answers! Life is full of unpredictability, uncertainty, and change. I don’t know too many people who like uncertainty except in novels, movies, or sporting events. And yet, there are strategies that we can apply in facing life’s curveballs.

In Stanford Review’s article “Living with Uncertainty: How to Accept and Be More Comfortable with Unpredictability,” Donnovan Somera Yisrael, a senior health educator at Stanford, describes ways to accept and live more comfortably with the uncertainty in our lives.

He starts off with two assertions:

We are motivated to pursue certainty.

Humans have always craved security and stability for us and our families. This was true for our ancestors and is just as true today. Yisrael states that our need for certainty is ingrained in us, and we should be compassionate with ourselves as we work to tolerate uncertainty.

Uncertainty is inherent in life.

The reality of existence is that unpredictability is part and parcel of life. We should not consider it our enemy or stress over what is going to happen next. Yisrael suggests strategies to deal with uncertainty.

LEARNING TO LIVE WITH UNCERTAINTY

Reframe uncertainty as normal.

When struggling with an adverse event, we tend to think that we have it worse than others or that we are the only ones going through a difficult time. Yisrael urges us to remember that adverse events are a reality of our everyday existence. Again, things change all the time, and nothing is certain.

As the first two verses of the Serenity Prayer state: “God grant me the serenity to accept the things I cannot change.”

Find where you can exert a sense of control.

We don’t have control over as many things as we think, including our bodies. This can be stressful. Instead of feeling helpless, know that you have control over some things. Focus on those. Even a small sense of control will make you feel better despite illness or adversity. You can discover a talent or skill and use it to your satisfaction. A home improvement project, no matter how small, can be empowering.

The third and fourth verses of the Serenity Prayer say: “(God grant me) the courage to change the things I can.”

Exercise your sense of influence.

There is always someone you could be helping. In doing so, you can feel you have a sense of influence on the world and that you matter. Find someone to help – a person, an animal, or a social cause. The world needs repairing, and it can use any help it can get.

Mindfulness and emotional intelligence keep you stable.

Check your thoughts and feelings and correct them when they are negative or unhelpful. Question what you think or feel for veracity: Is this really true? If you fail at something, accept the failure that occurred in that moment instead of feeling like a failure overall.

Keep your stride.

We often admire athletes and performers who experience unexpected events, bounce back, and take it in stride. We admire the resilience they show. Some resources to increase our sense of inner flexibility and endurance include a sense of hope and gratitude. Proper sleep, nutrition, exercise, health care, and medication adherence are essential to keep your stride and bounce back from adversity.

Practice self-compassion and seek help when needed.

Be kind to yourself if you experience fear and nervousness, and don’t judge yourself too harshly. No one is perfect, let alone perfect all the time.

As someone who struggles with generalized anxiety disorder and attention deficit disorder, I often worry about the future and feel inadequate. In moments of doubt or fear, it helps me to question those defeating thoughts and feelings. I remind myself of my good qualities and focus on how lucky I am to serve my clients, whom I hope to inspire as much as they inspire me.

 

Epilepsy Alliance Florida is dedicated to supporting the more than half a million Floridians impacted by epilepsy by confronting the spectrum of challenges created by seizures. For more information, contact us at 877.553.7453 or epilepsyalliancefl.org

Beatriz O is a social services case manager at Epilepsy Alliance Florida in Miami, Florida, an animal lover, and a writer at heart. Epilepsy Alliance Florida is dedicated to supporting the more than half a million Floridians impacted by epilepsy by confronting the spectrum of challenges created by seizures. For more information, contact us at 877.553.7453 or epilepsyalliancefl.org