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An excerpt from a chapter I'm currently working on entitled, "On Suffering":

Suffering is a humbling experience. It often makes you reliant on others and has the potential to transform you into the most amazing version of yourself. Again, your choice. And I get it. At first, you feel you don’t have a choice. It’s as if life has ripped you in half and has stolen everything from you, even your ability to choose.


People often compare their suffering to mine, telling me of their struggles and then saying, “then I think about you, and I’m like, my problems aren’t anywhere near what you’re going through.” That bums me out. Why would someone feel they need to compare and, in doing so, dismiss their suffering? Suffering is suffering. It’s where you are. And yes, I would win 9 out of 10 times, as it seems that ALS has a reputation around health care providers and doctors that it is the cruelest of all diseases. But it is not a competition. Do not dismiss your suffering. Unless your suffering is first class was full, so you had to fly coach.


I have six friends/acquaintances who have lost loved ones since my diagnosis. Four lost children ages 9, 17, and 31 and a newborn at birth. One lost her husband and father of four children under 13. One lost her mother. I make no claims to know their pain. How could I? And they don’t pretend to know mine. If we get a chance to sit together, we hold hands and look into one another’s eyes and we’re quiet. Because we speak the same language of broken-heartedness and loss. And we know there is no fix to the pain, and we look to each other for solidarity, for companionship, for a safe space, and for love. We don’t need words because, honestly, there are no words that ease the pain. We acknowledge one another’s pain, and together we allow the presence of the other to validate our brokenness, and we know in this moment that we are seen.


No one asks for suffering and pain, and yet no one is exempt. So, when life knocks on your door and delivers an uninvited tragedy, as the weeks and months pass, and you finally catch your breath again, know that you are not alone. Realize that this is going to either derail your whole life, or it’s going to transform you into a better version of yourself. And then, day after day, put one foot in front of the other and make the intentional decision to allow your suffering to shape and form you for the better. Don’t waste your sorrows. And give yourself plenty of grace and sit with sadness whenever she visits. She is here to stay, so be kind to her, honor her, and have a cup of coffee with her when needed.




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