Today is Purple Day otherwise known as Epilepsy Awareness Day. It is a global effort to increase awareness of epilepsy worldwide. As most of you know, seizures have been a part of our lives since the day the girls were born in December of 2004. I will never forget watching Livy have her first seizure only hours after birth in the NICU (neonatal intensive care unit). I never expected to be a new dad to a little baby with so many health challenges.
- To spread awareness, I could give you various numbers like:
- 3.4 million people in the United States have epilepsy
- 65 million people across the globe have epilepsy
- 1 in 26 people will develop epilepsy in their lifetime
- 1/3 of people with epilepsy have seizures that are resistant to current treatments
- 1 in 10 people will have a seizure
Yes, all of these are important statistics but when you or a loved one is the 1 in 26, these facts take on an entirely different meaning.
Epilepsy is much more than bullet points on a page. It seeps into our lives and always keeps us on guard. Every day begins and ends by the clock with Livy’s five anti-seizure drugs. Despite her multiple brain surgeries, she still has intractable epilepsy (not fully controlled by medications). We are forever vigilant watching for the smallest new twitch, eye gaze, or sound. All could mean a change in her neurological condition.
We have been sleep-deprived for the last 16 years. Livy would often seize for hours during the night. Till this day, her schedule is on her own terms which means she has an irregular pattern. We are up every night, checking to make sure she is okay. Epilepsy, in all its stealth, has no respect for time of day or any day for that matter. Birthdays, holidays, and other special occasions have fallen victim because seizures can occur anytime or anywhere. They are unpredictable aside from some people knowing that certain triggers may cause theirs.
This beast is ruthless in its ability to wreak havoc on the lives of siblings as well. “We can’t go there….” often ends in, “…because it’s not good for Livy.” Epilepsy is notorious for being selfish and sucking attention away from other family members. Thank god we have a patient, selfless, empathetic angel in Hailey who has always, I repeat, ALWAYS, been understanding of what we do as a family to ensure Livy’s safety.
Our bedroom closet is full of medications and supplies. Our dish drying wrack has a “Livy Only” section that holds her syringes. Her seizure tracking notebook is displayed openly on the counter because we know it is only a matter of time before we will write the next entry. These are all constant psychological reminders of the difficulties Livy has faced and what she continues to struggle against. The scar on Livy’s head from surgeries, the outline of her subdural shunt trailing from her head down her neck, and the distance in her eyes shortly before she has her next seizure remind us about the journey we have walked. The early years of Livy’s life are ones we want to remember but constantly try to forget.
In some ways, Livy has been fortunate. She is in wheelchair. That seems strange to say but if she could walk, she would have been at great risk of falling and hurting herself during any one of her 10’s of thousands of seizures. We know many families who struggle with this risk each day. Giving their kids the freedom to be kids while also ensuring their safety is a balancing act that can have serious consequences. We never thought Livy being confined to a wheelchair would give us piece of mind, but this is one area it does. Here, we are forced to take the good with the awful.
Another area of give and take is dealing with insurance companies to fulfill Livy’s needs. It is a talent Allison has developed but will forever cause stress and anxiety. Our system of healthcare is not designed to work for people with chronic issues. For every new hoop Allison must jump through, it affects her health and wellbeing. Making sure Livy’s seizure medications are ordered, shipped, and delivered is an exercise in persistence and fortitude that literally drains the life from Allison. One medication, which we believe works the best for Livy, would cost more than $2,500 per month out of pocket! You can see how that would drain your finances quickly. It is why there is no option except to weave our way through the never-ending maze of obstacles.
Although Purple Day comes but once a year, the battle with epilepsy rages on every day. Aside from my career that is now in the field of epilepsy, the condition is ever present. It plays an outsized role in our lives and likely always will. It is difficult if not impossible to recall what life was like before I first saw Livy stiffen and shake. Then again, we have been forged into different people through pain and sorrow, determination and will, doubt and guilt, joy and triumph.
The epilepsy community is replete with unsung hero families and individuals who have loved, lost, and overcome great adversity. Many have had to endure the unbearable death of a child due to epilepsy or underlying genetic condition, or a complication from a procedure. It has been our privilege and honor to know a number of these families. For every loss, a name is tattooed on our hearts. The only way to make it through our shared grief is the belief that by honoring their loved ones, we can become stronger and unite to make life better.
Although our Livy is an extreme case, there are far too many families like ours. They are also wearing purple today. Tomorrow, they may be adorned in a different color, but they are continuing to fight…to fight for control, to fight for answers, to fight for peace, and to fight for time. All of which epilepsy can take in the blink of an eye.