I Am Still Here

I may be exhausted, but two years later at least I am still here.

Today, I remember one of my mantras… celebrate all your victories. Even the small ones. Maybe especially the small ones. The way I look at it, if you do that you’ll have more celebrations and less time in between them. Win/win, right? 🙂

Maybe I’m just greedy. Maybe the knowledge that I don’t have 20 more years of life expectancy that I might have had without this insidious disease makes me that way. Doesn’t matter, I’m determined to simply enjoy celebrating everything that I can, while I still can.

Today is a celebration of sorts, as well as a reflection on the past two years and a somber look ahead.

Two years ago today, May 3, 2021, I walked out of the doctors office, stunned, bewildered, and dismayed, with a newfound knowledge of a fresh diagnosis of having a terminal disease, ALS. I was hopelessly lost. I was an emotional wreck. I was physically and mentally exhausted. Everything I knew, everything I expected about my life, my future, was now void. Filled instead with an uncertainty beyond my comprehension.

In what is a bit of a monumental understatement, my life was forever changed that day. Yet, candidly, some of it could be construed as changed for the better. Wait, diagnosed with a fatal, incurable disease… and changed for the better? Surely, you’re not serious. Yes, I am serious, and don’t call me Shirley. 🙂

In the depths and darkness of my diagnosis with this disease, I was forced to reevaluate everything. I needed to re-prioritize what mattered. I was determined to recommit to the things – specifically the people and the activities – that were truly important in my life.

Bottom line, I was now committed to live like I was dying… because, whether I liked it or not, I was indeed dying.

Note: regardless of the reality of it, despite my acceptance of it, and no matter the number of times I say it, that is still really hard to actually type out. Yet, sometimes the most brutal of truths are, simultaneously, both incredibly painful and will set you free.

Today, however, my celebration is somewhat muted. Dialed back, and tempered with a strong dose of reality. I am not able to celebrate two years of being disease-free. I’m not going to celebrate the debilitating loss of yet another physical capability. I’m not interested in celebrating the ugly, brutal knowledge of the reality that lay ahead.

That said, I will still celebrate today… because I am still here.

Even though research has shown that over 50% of ALS patients die within 24 months of diagnosis, I am still here.

Even though I am acutely aware of the fact that time is not on my side, I am still here.

I am living, breathing, and spending quality time with those I love. In the big scheme of things, I have been Blessed beyond the greatest expectations I could’ve ever had for my life.

And whether I am blessed to live another day, another year, or another decade, I am resolute and determined in my commitment to celebrate all of my victories.

Because in doing so, I will know that I am still here.

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