I’m Jaemie, a thirty-something living in southwestern Pennsylvania. Professionally, I’m a storyteller, a pixel pusher, and a creative problem solver. Personally, I am a Celiac (gluten free), a runner, a healthy living advocate, a Pittsburgh Penguins fan, and a tuxedo cat mama, and usually caffeinated.
I get it. Some of you are growing tired of the videos. Many people don’t get it: Why are people dumping ice on their heads in August? Where’s the challenge in that? Some are getting annoyed: How does dumping water on your head help people with ALS? You’re wasting clean water? Quit showboating and just donate! Others are (ignorantly) angry: Maybe if this was for cancer or something serious, I would see the point. (While I wish I were making up that comment, I read that as a response to someone asking what the deal is with the Challenge on Facebook.)
But, to me, to my family, and to many others like us, this is important. We are an ALS family. Sure, the whole dousing yourself with icy water instead of or as well as donating to the ALS Association is a bit silly, but who cares? The Challenge is raising awareness by encouraging people to talk about ALS. People are looking up information about the disease to find out what it is and to find out why spreading awareness is important. The Challenge is also raising an unprecedented amount of donations ($22.9 million so far) for the cause.
This matters. A lot.
21 years ago, my family and I lost my grandmother, Anna Mae Orris Furgiuele to ALS, also known as Lou Gehrig’s Disease. I was ten years old, and I wasn’t able to fully comprehend what happened at the time, but I knew that my grandmother had been sick. I wasn’t quite sure what kind of sick she was, but I knew that it was rapidly taking pieces of her. In a few short years she had progressed from being mobile to using a walker to using a wheelchair to bed-bound in a nursing home. She had gone from living on her own in an apartment to living with my aunt and uncle to living in a nursing home.
One of my last memories of my grandmother is happy-sad. My mom and I had gone to visit her in the nursing home like we did a few times a week. I always hated going to visit her in the nursing home. It wasn’t that I didn’t want to see my grandma, it was because nursing homes are slightly terrifying to an 8-9-10-year-old. I’m sure they aren’t fun for the residents either. The nursing home always smelled like urine. A resident was always yelling or crying or screaming loudly. Someone who wasn’t fully in touch with reality always thought that you were someone that they knew or that was there to see them.
My mom and I were in my grandma’s room for a bit before my mom went to talk to the nurses at the desk. There was always something to complain about or confirm. I was 9-years-old, so I’m not quite sure what was going on, but I knew that my grandmother didn’t always get the best care. The nurses didn’t seem to understand – or care – that my grandmother was still there mentally and fully aware of what was going on. I’m not saying that my grandmother always had subpar care, but I know that it was quite a battle for my family to make sure that she had the best care and treatment.
My mother left me and my grandmother alone for a few minutes, and it wasn’t a big deal. I was used to spending time with Grandma. The television was on, and we communicated the best that we could. At that point, it was getting difficult for my grandmother to speak clearly enough for my 9-year-old self to understand. I struggled to understand the message she was trying to convey to me. I knew it was important because she was determined to get the words out. She spoke slowly and kept repeating words. She mentioned her engagement ring, that she wanted me to have it, that she wanted me to wear it, and something about my wedding. She made me promise that I would take the ring and wear it. It took awhile for me to understand what she was saying. I know that she said more than those bits, but it was upsetting for her and she was crying, having difficulty breathing, and she sounded almost angry, almost yelling as she was explaining this to me. I know that I was getting panicked. Nine-year-old me was afraid that I had done something wrong and that I had upset my grandmother. My mom came back to the room, and my grandmother calmed down, but this memory sticks with me.
As an adult, I can understand that in that moment my grandmother knew what was happening to her body and she realized that she wouldn’t be around as I grew up and got married. I remember the look in her eyes as she struggled to get out a few sentences and how frustrated she was that she couldn’t tell me what she wanted to without scaring me. It’s a memory that gets sadder with time because I’m old enough now to realize what that moment really meant. It’s a happy memory, too, because my grandmother wanted to be sure that she could share something with me to hold onto into my adulthood.
If you have participated in the Ice Bucket Challenge, if you have donated, or even if you have just taken a moment to understand what ALS is, I want to thank you. No matter how silly or annoying this is, it is important to someone. It is definitely important to me.
I challenge you to take a moment today to read the information I have linked in this post, and I encourage you to join me in donating whatever you are able to donate (time, money, etc.) to the ALS Association .