How much of our life is spent planning for our future?

When you’re a kid, you think about getting through the school year and making it to summer vacation. You daydream about your future career, the person you may marry, the house you may buy (right next door to your best friend, of course) and the fictitious kids you might one day raise. Young adults obsess over college entrance exams and essays, then about selecting a major, and landing that perfect job after graduation. By the time you hit 40, you start mapping out how you’ll afford to send your own kids to college, save for retirement, and dream about downsizing to a condo someday. Of course, we all hit hurdles along the way and know that life doesn’t unfold itself in a neat predetermined package. Despite these inevitable obstacles, most of us indulge in the luxury of planning for our futures.

What if your future was stolen from you? What if you were diagnosed with a deadly disease just weeks after getting home from your honeymoon? What if you had a college scholarship in Vocal Arts, but were too sick to take advantage of it? What if everything you thought your future would hold disintegrated the moment your scleroderma diagnosis was delivered? What if you were only 25-years-old and instead of spending the last 5 years at campus parties and on job interviews, you spent it battling to stay alive?

This is precisely what happened to my friend, Chanel White.

You may recall that Chanel was the other woman featured in the photo that sparked the Facebook Doesn’t Like My Face story in 2015. I got to know Chanel through emails, phone calls, and social media. We never met face-to-face (pardon the pun) because Chanel lives in Seattle and I live outside Chicago.

After going through the #sclerodermaselfies campaign together, I felt very connected to Chanel. We are from different generations, religious backgrounds, and regions of the country, but are forever linked in our common mission to cure scleroderma. It’s hard to explain without sounding ‘Cuckoo for Cocoa Puffs,’ but since meeting Chanel, I’ve felt inexplicably compelled to help save her life. I was on the brink of death 10 years ago and attribute my survival to human kindness and heroic medical professionals. After my remarkable recovery, I promised myself I would one day ‘pay it forward.’

It’s funny how lives intersect. After years of doctor appointments, tests, procedures, and surgeries on the West Coast, Chanel and her mom came to Chicago just this past Labor Day weekend for testing at Northwestern Memorial Hospital. They were hoping Chanel would qualify for a life-saving stem cell transplant. My sister, Heidi, and I spent a day with Chanel and her mom, Denise. As we drove with them to Navy Pier, Heidi pointed out Chicago landmarks while the gorgeous views of Lake Michigan glistened in the sunlight. I kept saying things like, “When you’re in Chicago for the stem cell transplant, we’ll take you to the top of the Hancock building…… when you’re in Chicago next summer for follow-up appointments, I’ll take you to the beach …….there’s a beautiful Botanic Garden I want to take you both to visit next time you’re here.”  

Each time I alluded to the future, I silently scolded myself. Lisa, stop talking about next summer! If Chanel doesn’t qualify for the stem cell transplant, you know she’ll be too sick to travel by next summer. Stop being so insensitive…..you sound like a clueless, naïve, overly optimistic idiot!

Even after my internal dialogue warned me to stop, I couldn’t help letting a few more comments about the future slip out. Yes, the thought that Chanel would not qualify for the transplant loomed in the corner of my mind during our visit, but I wanted to focus on a future universe where Chanel was alive and well.

It was several nail-biting weeks until we heard that Chanel had been approved for the transplant. This past Sunday, we got the unimaginable news that her health insurance will cover the bulk of the cost. This is extremely rare, as patients typically must file multiple appeals before their insurance even considers covering the transplant! It seems like all the stars are aligning for Chanel. She and her mom will be traveling to Chicago late this fall to begin her stem cell transplant at Northwestern Memorial Hospital in Chicago. Ten years ago, I was emergently transported to that very same hospital and given slim chances of surviving.

Chanel has just one final obstacle in her way. She will still need to cover the cost of her insurance deductibles, airfares to and from Seattle, lodging in Chicago, and miscellaneous expenses. To do so, she must raise 25,000 dollars by the end of October.

I want to take Chanel to the beach next summer and let the foamy waves lap over our feet. I want to take her to the top of the Hancock building and shriek when we look down. I want Chanel to inhale the fresh fragrances that will engulf her at the Botanic Gardens. Above all else, I want Chanel to be here in ten years to ‘pay it forward.’

Ways to Help Chanel:

• Watch and share this incredible video of Chanel singing (OMG- her voice is beyond beautiful) and join the #singingforstemcells campaign
• Donate directly to: https://www.youcaring.com/chanel-white-611054
• Share this post with the hashtag #singingforstemcells
• Buy My Book; Does This Hospital Gown Come With Sequins?  I’ll be donating 100% of sale proceeds to Chanel White’s stem cell fund during the month of October.
• Visit Chanel’s site for more background on her brave battle: http://thetubefedwife.blogspot.com/