Focus On The Life You Have Left -- Take a Risk and Bend the Rules

Name: Jaime Filer
Pronouns: She/Her
Instagram: jaim91

“Living is so much better if you don’t forget you’re dying, because then you can take a risk and bend some rules; you know?”
I watched the movie Blackbird on a plane ride to Phoenix last week. The premise is that Susan Sarandon has ALS, and she’s picked a date for her husband to administer a lethal injection – in order for her not to live with the symptoms of Lou Gehrig’s disease as it progresses. When her kids asked their dad why he was OK with what she was doing, he said, ‘Because it means a life of being hooked up to machines, never being able to walk again, being fed by a tube…” Now that line hit me in the stomach, and it’s because my personal feelings about the movie are biased. I’m not here to debate, but my dad lived with ALS for 19 years. He lived a successful, productive, life filled with happiness and love. He went to work two days a week (Ontario Superior Court) until we was unable – and once it became too much, he worked from home whenever he wanted (he was doing it before it was cool). The character in the movie didn’t want to be “locked in a body”, but that was her perspective! My dad didn’t view his illness as debilitating – He saw it as an opportunity to be an advocate for people with disabilities, a light to people who needed hope, and a damn good father and husband. His mind never suffered, even if it took him a little longer to communicate using different devices (as technology progressed so did his devices). I would rather have a dad that took longer to ’speak’ than not speak at all. It was the most inspiring, motivating, empowering feeling in the world to have a real life super hero who didn’t have it in him to give up or give in. If he could be faced with death every single day and say, “Not today.” Then how could I grow up believe that anything was impossible?
There are always solutions if you want them. If you’re willing to look for them. If you’re ready to EMBRACE them.
Sam Filer and Susan Sarandon’s character had something in common; they both had the same take on the fragility and impermanence of life once they were faced with death. My dad used to say all the time, ‘Rather than curse the darkness, light a candle.” He taught me that the sooner you stop worrying about death, the sooner you can start focusing on the life you have left. He demonstrated that every single day is a gift, not to be taken for granted. I’m grateful that my dad was willing to be put on a ventilator, be tube fed, use a wheelchair and devices to assist his speech … because it meant I got a Dad for as long as I did. I’m grateful he chose life.
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