“You have no choices about how you lose, but you do have a choice about how you come back and prepare to win again.” Pat Riley
As a person living with epilepsy, I am drawn like a bee to a beautiful bright flower, to movies that speak of individuals battling a chronic illness or cancer. Their spiritual strength, the immense love they receive from family and friends and a dance in the rain of so much more. I recently gravitated towards the movie titled “Still Alice”.
I’d put off watching this movie for quite a while because I wasn’t sure what to expect. It didn’t appear to spark my interest previously. I don’t believe I’d been listening with my whole heart when read the description. Finally, I gave a true and clear listen to the description and I felt a stir within me. Both my husband and I decided that we’d watch this movie together.
I did not assume that this movie would be entertaining, however it was engaging because I in no way could have foreseen that it would be so relatable. No, I’ve never battled early onset Alzheimer’s Disease, have someone in my family nor know anyone with this condition, however in watching the film, I found myself thinking “I know what that’s like!” “Oh, I completely understand!”, holding back tears for the main character Alice (As well as myself and others affected by the condition epilepsy), and feeling the swelling of a lump in my throat begging to be released as sobs.
This was such a profound movie, I am moved to list the similarities that had reached out to me.
- A change of life in the blink of an eye. One moment, you’re living a productive and normal life. Out of the blue a medical condition rocks you and everyone who love you’s world like an earthquake.
- The fight for life. You do what you can to continue on doing what you love, however your condition makes certain tasks doubly challenging.
- A pill divider to hold your medication(s) becomes your best friend. Morning, day, and night, medications to combat the condition. To ease the discomfort that it brings. To calm the storm happening within our brains. However a cure is yet to be found. The medication currently can only do so much and we pray it can do something to stop the condition in its tracks.
- For some, you just need to leave your job because your condition simply makes it too difficult to work.
- Tests. Tests. Tests. A whole lot of tests and scans of your brain. Which is a good thing but can be exhausting.
- Brain Fog. Whether medication side effects or damage to the brain as a result of my condition, forgetting more than usual is frustrating. Forgetting names, dates, conversations had, certain details given.
- Relying on notes. Whether it be paper notes or the note app on your phone in order to remember such topics as listed in number 6. Names, dates, conversations had, certain details given and more.
- Playing memory strengthening games on your phone. Even I do this to keep my mind sharp. Again as said in number 6, whether it be medication side effects or damage to the brain as a result of my condition, I want to do what I can to keep my mind as sharp as it can for as long as I can.
- Family watching and caring in protection. As Alice tells her husband in the movie, “I don’t need a babysitter.” this is how I feel at times yet I know that it comes from a good place when there are moments I could have the house to myself or walk to the store. If the shoe were on the other foot, I could honestly say I would want to ensure that the one I love and care for were protected and safe from harm.
- Sleepless nights. In the beginning of my diagnosis, and even sporadically throughout my eight years living with epilepsy, I find myself tossing and turning, lying awake lost in a forest of thoughts, questions and emotions. Minutes tick by and my eyelids fall shut like a flower petal hitting the ground, only to reopen again a few hours later and repeat the very same cycle.
- “Well, it’s not always the same. I have good days and bad days, and on my good days I can, you know, almost pass for a normal person. But on my bad days I feel like I can’t find myself.” – Alice
I can’t walk in the shoes of someone who lives with Alzheimer’s, however in hearing this quote, this stuck out to me in my battle with epilepsy very strong. I myself, have good days and bad days. Good days when I have no seizures at all or less seizures than usual and I am so very thankful. Bad days when I am beaten down with repeated seizures leaving me wanting nothing more than the couch and a good movie. If I allow myself to meditate too much on the why’s and the how’s, I become weakened emotionally and spiritually.
- Sharing the story of the condition faced. Alice was given an incredible opportunity to share her story of being diagnosed with early onset Alzheimer’s Disease at the Annual Dementia Care Conference. A powerful and impacting speech that captivated me. To help her remember what it was that she wanted to say, she brought notes. This is the very same method in which I use when I speak publicly. I have spoken and conducted multiple interviews involving my story and it is my hope to do more in order to reach out to as many affected by epilepsy as I am able.
- There is no cure for Alzheimer’s. Currently, there is no cure for Alzheimer’s Disease. Just as currently there is no cure for epilepsy. Both conditions are in great need of funding in order to find a cure and deserve a bright light of awareness cast upon it. Interesting fact: Both conditions’ colors of representation are purple!
Though we who battle Alzheimer’s and Epilepsy walk two different paths, we have quite a few similarities as they impact our brains, our lives and those that love us. I would encourage you to watch the movie, “Still Alice” and share what you think in the comments section.
As we battle epilepsy, advocate for this incredible cause, share with the world our journeys, let us also open our hearts to those battling Alzheimer’s and all chronic illnesses.