Today’s guest blogger is our treasured EE Board Member and Emily’s lifelong best friend, Jessica Rutstein Lazarus, whose post officially launches our #35for35 campaign and birthday celebration for our dear Emily.
For anyone who doesn’t know me, my name is Jess. I am one of Emily’s best friends since middle school, and I also have the honor of sitting on the EE Board of Directors. This year, I will continue my tradition of kicking off our campaign in honor of Emily’s 35th birthday, effectively closing out our annual drive.
If you were to scroll through my calendar from 2019 you would probably assume that Emily and I saw each other pretty frequently. There were plans for dinners at our local Japanese restaurant where the owners know Emily and have her regular order memorized; for frozen yogurt where we would both try to reign in our respective sweet tooth; or for coffee at the neighborhood Starbucks where we have been meeting each other since we were in middle school, during the days when we had to be dropped off by a parent.
The reality, however, is that those dates on the calendar were the hopeful ones, the optimistic plans, and the desired get togethers. The majority of them did not come to fruition, and it was not for lack of wanting or effort.
Whether it was exhaustion, a tickle in the throat, or the fear of collateral germs, the unfortunate truth is that most of our plans had to be cancelled or postponed. That is our current reality. Most people do not realize the daily choices Emily, or anyone with an illness like Cystic Fibrosis (CF), has to make and many of them remain invisible.
“The difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices…”
~ Christine Miserandino, The Spoon Theory
Years ago, Emily introduced me to the idea of “The Spoon Theory” by Christine Miserandino and how it relates to the difficult choices she has to make each day living with a fatal illness. The theory uses individual spoons to represent the limited amount of choices, energy, and vitality available each day while suffering through a chronic illness.
Christine described, “the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire…’’
It is helpful for me to think in terms of Emily’s daily spoon count and her units of energy to understand that she has a limited amount to give. Emily has given so much to the critical work of EE as a leader in patient advocacy and entrepreneurial philanthropy, working tirelessly to bring breakthroughs to those with CF. But, I see Emily’s spoons, her physical and mental strength, and fear how quickly she may run out.
This year I saw Emily end up in the hospital as a result of catching a cold, something that is not even on most of our radars. So, even when we have been looking forward to a scheduled dinner date for three weeks, we do not have the luxury of letting our desire to spend time together take precedent over possible health risks. I now worry more than ever about the potential repercussions of exposing her to germs that I likely carry from my preschool-aged toddler. I also fully understand how important it is to insist we postpone the minute Emily realizes she is already feeling slightly run down or depleted. I am watching my best friend get much sicker significantly faster with a longer recovery time.
As I think about Emily’s birthday this year, I am aware in so many ways of her increased daily challenges. A decade ago, she had more spoons to spare for dancing and singing at local bars and take-out dinner dates in our apartment building. But in 2020, though I plan for us to add to our long list of hysterical memories and special moments, it is painful to not be able to add to her reservoir myself. If I could give her anything, I wish I could give her more spoons, more energy, more time.
Only game-changing breakthroughs can bring Emily, and others with nonsense mutations of CF, more time and a future. And creating this future, filled with unlimited spoons of possibility, is up to us!
The greatest birthday gift we can give Emily—and the whole CF community—is a financial donation that will help EE fund more life-saving research and get us one step closer to our ultimate goal. The past year has brought major breakthroughs for 90% of CF community, but we are still fighting for Emily and others in the final 10%.
Take part in our #35for35 campaign and help me celebrate my best friend Emily’s 35th birthday with a gift that helps secure many more!
“The Spoon Theory” was written in 2003 by Christine Miserandino to describe her experience living with lupus. She is an award-winning writer, blogger, speaker, brand ambassador, patient experience advocate, and the founder of www.ButYouDontLookSick.com.