May is ALS Awareness Month and for the first time in ten years, it feels different. For the first time, it feels like you can relate. That you know what it’s like to have everything turned upside down in what feels like an instant, for a health reason. To have something that will impact all aspects of your life, with no cure and a giant question mark as to when it will all be over.
When the pandemic first began it was interesting, and quite frankly a little funny as I observed people freaking out about having to stay at home. As I began to better grasp the situation, the less humor I found, but instead a feeling of being better understood for the first time in a decade. But then sadness because I don’t want you to know what this feels like!
I’ve struggled with the ALS awareness piece this year. Like most people right now, there is an uncertainty that looms, which creates some anxiety and stress. We decided against our annual fundraiser this year, as the timing could not have been worse and it simply didn’t feel right. That adds stress as we’d already gotten the ball rolling on a new wheelchair for Brian. (He is long overdue and so uncomfortable. More on that coming soon!)
While we share about ALS often, as I looked back on all the time and effort I’ve spent to create eye-catching content to raise awareness about ALS each May, I felt a different approach could resonate better this year. Brian reminded me that info about the disease itself is abundant online, with many sites already well established and providing data for those seeking to understand it. No need to reinvent the wheel. As usual, he’s right.
This is Brian’s 10th year with ALS. Sadly, not much has changed in all that time. There is hope but the reality of living with ALS is that it is hell. I know I’m guilty of sprinkling a bit too much sugar on things in order to make it easier for you, the reader, but if I don’t show you the whole truth then it does a disservice to the effort of raising true awareness about this brutal disease.
I thought about this for days and decided to give myself a writing assignment. I first decided on ten things to write about in a bit of detail. Without fear, as gritty and raw as I could in some places, and to ensure it wasn’t too depressing, I decided to add a ‘silver lining‘ to each piece.
So buckle up and bring some tissues. The next ten days are sure to elicit some tears. You’ll laugh, you’ll cry…and maybe want to punch something.
I’ll post an excerpt from each piece, along with a link to the full blog, in the caption, as I know not everyone is down for the dirt right now. I debated sharing this during these times but I think it’s important because now is the time you can relate to so many of these feelings, and perhaps find some nuggets of wisdom and/or hope in the writing.
Yes, hope. I still hold on to hope, albeit a tiny shred of it at times if I’m honest. I can still find beauty in every day, though the nights and days are dark and full of terrors. (Yes, I did just make a corny GOT reference.)
Here’s what’s in store for my Ten Days of ALS Awareness.
1. Before ALS
2. How This Got Started
3. The System is Broken
4. Adaptation is Key
5. Getting Through it with The Three Gs (Grief, Guilt, and Guts)
6. A Day in the Life
7. People Will Surprise You
8. You are the Hero of Your Story
9. Expectation vs. Acceptance
10. Conclusion
Thank you for coming along on this journey and thank you for your support.
