Thursday, February 19, 2015

Getting Personal: A Fight Against ALS

This place is normally a spot where I share my personal style, my favorite fashion pieces, my favorite looks. Rarely do I get personal here, and I've started and stopped this post many times, but I've really felt compelled to share over the past few weeks. The pretty things in life are so wonderful, and I am so inspired by this place, but life is certainly not always about the newest shoes, the prettiest flowers, and a favorite style. If you're looking for that, it'll be back, but for tonight, I felt the need to share something a little more heavy. I don't even know what the point of this post really is, other than to finally divulge what has been weighing on my heart, to find hope, and and to hopefully  find a small step towards a cure to a disease I wish I had never heard of. 

To get a full grasp, you need to picture this: a 3 year-old girl whose grandmother brought her home a violin, only to carry her to violin lessons over the next 12 years, until that little girl could drive herself. Picture a grandmother who loved to take her grandkids all over the place, whether it be to Chuck-E-Cheese, Disney World, or even Hawaii. Picture a woman who loved to travel the world, to experience new cultures, to see places as others see them. Picture a woman who always gave - and continues to give - of herself to others. And picture a woman whose faith in the Lord has been steadfast despite any struggles put in her path. If you picture that, you'll see my grandmother, my Nonny.

I'm thankful for an incredible relationship with my entire family, and that certainly didn't stop short of my grandmother. She and I have always been very close, and we have done many things together: violin lessons, swimming with dolphins, a trip to Europe, kayaking, countless shopping excursions, a vacation to the tropical sands of Hawaii, but some of my favorites were when we were just together, whether it be sitting on the dock just talking about life or looking through old photos in her living room. And through all these things, she was always incredibly healthy -- a 2 mile walk on the beach was the perfect start to her day and gardening in her roses was the perfect end.

In the summer of 2011, she fell a few times, which led to some questions -- why was a healthy woman, though aging, falling out of nowhere? After many tests that ruled out the possibilities of other diseases or illnesses, three letters I wish I could make disappear became the obvious diagnosis: ALS. 

ALS, or commonly known as Lou Gehrig's Disease, is a motor neuron disease that slowly affects the mobility of a person. The brain no longer tells the muscles how to function -- this could result in loss of movement, breathing, eating, speaking, and it can even result in death. While a person may no longer be able to speak or eat on his or her own, their mind is fully functioning, meaning he or she is very aware of everything going on. I'm incredibly thankful that my sweet Nonny still has her voice -- we talk every single day on the phone -- but I am constantly saddened that she can no longer walk those distances on the beach, those streets of France, or those quick trips out to the dock. 

To say that this experience has questioned my faith would be an understatement. I constantly question why this would happen to someone I love, someone who has been diligent in her faith. A few nights ago, I watched a video about a man who "spoke" for the first time in 11 years, and though I was intrigued and inspired, I was also emotional and angry. Why is it that we have to resolve to letting a computer become a man's voice? Why can't we find a cure that will bring back his voice, and his movement, and his state of being, or prevent him from even losing it in the first place? But then I was reminded that I am not the only one experiencing this heartbreak. My entire family has to endure it, as do families around the world who have loved ones fighting ALS. But even more so, I am reminded that my grandmother is the one that faces these actual challenges every single day, not me, and yet she is still so strong minded and faithful, a true representation of how I should be. I'm reminded that I should not question God's plan, and that there is a purpose: "To every thing there is a season, and a time to every purpose under heaven."

Back in the fall, the ALS Ice Bucket Challenge took the world by storm, and thousands and thousands dumped  buckets of icy water over their heads and/or donated to the ALS Association. In that moment, a move that was made possible by social media, so many more people learned to understand what ALS is and the importance that research is continued in efforts to fight off this disease.

It is my hope that we will see a cure for this disease -- as of this moment, there is none. There are medicines that can be taken, but there is no promise that it will better one's lifestyle or prolong one's life. Though I am heartbroken by this disease, and so many other diseases that have no promised cure, I am hopeful. I am hopeful that we will find a cure, one small step at a time {though a large step would be even better}. I am faithful that there is plan in all of this. I am inspired to never take one step or breath for granted. I am thankful that we do have technology that allows patients to get more out of a restricted lifestyle, like an electric wheelchair or a computer that gives voice to those who cannot speak. And I am privileged to have not only a picture of an incredible woman who will always be my grandmother but to get to experience her love and faith every single day.

If you would like to learn more about ALS, visit If you feel compelled to donate, those donations will go towards both research as well as towards helping victims who need assistance, whether it be a ramp to go in their house or a wheelchair that can get them from place to place. And lastly, I ask for thoughts and prayers for my grandmother, for those who fight ALS, and for those who fight other incurable diseases. 

This weekend, I get to celebrate the woman in that picture's 73rd birthday, and I am looking forward to every moment of that day. I am thankful to have such an inspiring role model, one who has loved me unconditionally, guided me when needed, given her opinion (even when I don't always like what it is), and her approval. I'm thankful for a grandmother and a best friend. 
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