When I picture a prison, I see a cell with three walls and bars. I see the loss of freedoms to go where you want and when you want. I see a very structured life lived by the clock…time for breakfast, time to go into the yard, time for work responsibility. When the lights go out, you are alone. A life sentence for a crime one didn’t commit must be awful. There are continuous questions of why me. There are constant legal battles for retrials. And there is the acceptance that the life one dreamed about will be different. Living this prison life is sure to test the emotions of any sane person.
Having difficult to control epilepsy is very much like living prison life for a handful of reasons. Medications must be given at the same time every day. The freedom to complete activities is often restricted based on the risk of having a seizure. There are many legal battles being fought for those with epilepsy including inequality, discrimination, and the legalizing of cannibidiol as well as rescheduling cannabis so it can be more widely studied. People with epilepsy are innocent. They didn’t do anything that deserves epilepsy. And for many, it is a life-long struggle. But there is also hope.
Livy’s shirt in this picture says a lot. The stripes look like the old incarceration outfits that used to be common. However, the hearts represent love. Love, to me, is hope. Hope because we will never accept that we can’t do more to help her. Hope for control. Hope that advances will be made. Hope that new treatments will be discovered. Hope because we see in her a spirit that is resilient and escapes the bounds of her epilepsy. Hope because she is able to inspire others to break free from their bonds and to not give up.
By no means am I saying that hope alone will solve issues. It must lead to passionate action with endless love that knows no end. Sacrifice becomes a way of life. One must become a focused, committed advocate.
There are many movies about the wrongly accused eventually being released from prison due to years of work on the outside by a loved one who was determined to find the right evidence or the one witness that knew the real story. There are cases where people have changed their careers to become the experts with the goal of liberating their loved one. As parents, we are Livy’s hope to organize people to change laws. We are Livy’s hope to educate others so the stigma is removed. We are Livy’s hope because unconditional love knows no boundaries. We are Livy’s hope to one day break her free from this monster that confines her and my family.
To quote Morgan Freeman, who played Red in the 1994 movie Shawshank Redemption, when he was released from prison, “I find I'm so excited, I can barely sit still or hold a thought in my head. I think it's the excitement only a free man can feel, a free man at the start of a long journey whose conclusion is uncertain. I hope I can make it across the border. I hope to see my friend and shake his hand. I hope the Pacific is as blue as it has been in my dreams. I hope.”