Pivoting to the After
I was trying to write part of my obituary and realized something. I didn't want a lot in there about my Instagram account, Ananda Pivot, or about the life I lived these last few years. In the last several months, my online community grew…a lot. I kept waiting for trolls or bots, but they never came. When I asked, they answered. When I made a wish, they left no stone unturned. My platform gave me the chance to keep using my voice, to continue teaching, and to help others. I was intentional and turned my unfathomable sorrow into late-night brainstorms. I used my account to cope, to create, and it’s a piece of my life worth mentioning. I am so thankful, and I never should have had the opportunity to make an account about my journey as a dying mom. I hate what this disease inevitably took from me and from those who love me. I am so proud I have helped others and am forever grateful for the support. But I shouldn't have HAD to, because ALS should have more treatment options by now. It has been around since the mid 1800s!
When it comes to the story of who I was in this life, I am more than the end of it. Thirty-six of my 39 years I just really loved the shit out of my life and who I was. Three and a half years after my first symptoms, I just feel diluted. ALS took my independence, my voice, and my life.
High school and college are each only four years of our lives, but we define those seasons with significant meaning. My season (time living) with ALS is almost the same amount of time. During this period, I lost SO much while gaining friends, connections, and novel experiences. And yet, while I know many of these relationships have formed in these three years through my social media channel because of ALS, I am so much more than these things. I should not be defined by this period of time, just as one wouldn’t define their life by their high school years.
I hope whoever reads this is angry enough to take action. I hope you're so pissed that you push for treatments and never let up. I see obituaries that often mention the deceased passed after their "battle" with ALS. It's the most unfair fight, the outcome never on our side. I watched Ferdinand with my sons recently and related to the bull entering the ring. You know what the ending will be. Even throughout my illness, I still would have these moments like…It won’t take me out. I’ll figure this out. I’ll be the exception.
So I traveled the world for treatments that aren't available here. I enrolled in a clinical trial, but received the placebo. I tried supplements, bought into scams, and blamed myself for progressing quickly because I wasn't thinking positively. ALS doesn’t care how much you care or how hard you try—it just keeps taking.
Meanwhile, our administration defunds research, and the number of Americans diagnosed keeps rising and burdening many with this unavoidable “battle,” which is not even a fair fight. So it's on you to push even harder for ALS to become survivable. Ultimately, the more awareness we generate, the more momentum we have towards finding treatments.
You are a part of changing this inevitable outcome. Do your part.
Be good to each other and love the shit out of your life,
Sara
