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She’s With The Band

Since I unfortunately still don’t have much to report, I thought I’d use today’s entry to tell you about one of the most inspiring people I have ever met. (But don’t worry! I’ve promised myself that this blog will NOT become a diatribe of self-pitying whining. There will be some positive news on the goal front tomorrow if it kills me.)

I first met Jan about three years ago. She was quite the woman – a former competitive skier and physiotherapist, she was brilliant, funny, kind, and beautiful. She was also dying.
Jan, a vibrant mother of three grown and equally gorgeous children, had been diagnosed with scleroderma, a rare condition that was slowly hardening her skin and internal organs. Her body was basically turning into scar tissue. As her condition worsened, she lost an incredible amount of weight, her facial skin tightened and pulled back so she could barely smile, and she began having trouble walking. She couldn’t even sit down or stand without help, and she must have been in incredible pain.
I say “must have been” because Jan never complained. Even when her illness was at its most pronounced, she fought to live a normal life–and what was normal for Jan would be considered extraordinary for most people. She still went to movies, danced at socials, and sang karaoke to the best of her ability. Most of all, she loved music and went to every concert she could. She even took her three kids on a concert tour across Europe and Canada. She gave everyone in her life generous presents, had a million friends, and adopted just about as many homeless animals. Jan was a force to be reckoned with.

I often wondered what it was like for this dynamic woman, who used to be a star athlete, to lose her mobility little by little each day. Jan managed to have enough energy for three people, and let me tell you–it was pretty embarrassing to be pleading exhaustion from a social and wanting to go home when she was still on the dance floor.
When Jan was first diagnosed with the most aggressive form of this terrible disease, they told her she wouldn’t see her fiftieth birthday. Everyone who loved her (and there were many who did) cried, but Jan had other ideas. She decided to prove those doctors wrong, and she did. She celebrated her fiftieth birthday with style and the disease went into remission. Everyone was hopeful that she would live to a ripe old age.

Jan loved almost any kind of music, but especially classic rock n’ roll. One of her favorite bands was Aerosmith. During a recent concert tour, she seized the chance to bring some awareness to the disease that was threatening her life. She came to the concert in a wheelchair, bearing a huge sign directed to the lead singer’s attention: Kiss Me Before I Die, Steve. And Steve Tyler noticed, and kiss her he did. This was only one highlight in an extraordinary life.

Jan passed away this month at age fifty-three. To show you what kind of amazing person she was, even her ex-husband moved back to the city to take care of her when her disease progressed.

Why am I telling you about Jan? Because Jan is a great example of living your best life. She didn’t start living this way because she found out she had a terminal illness – she’d always lived this way. Jan took risks, and she didn’t let other people’s judgements or opinions get in her way. I wish I could have spent more time with her. I wish I could have known her longer. But I knew her well enough to know that the lady didn’t have any regrets.

In Jan’s honor, I challenge each one of us to live our lives a little more fearlessly. We never know when scleroderma, cancer, or even a misguided bus will suddenly bring a tragic end to our plans.

I’m not sure what kind (if any) of afterlife I believe in, but I like to think Jan has found her Rock n’ Roll Heaven. She’s with the band now.

**Thanks to Jan’s daughter Laura for the photos.
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  1. Chris

    Wow… very moving. It’s hard not to be inspired after reading a story like this one.

    I think it’s easy to come up with reasons why we’re not living our lives to the fullest in every way, or fulfilling our hearts’ desires daily. Finances… family responsibilities… those pesky inconveniences called ‘laws’… But there’s no reason why we can’t be awesome in our everyday lives.

    Until we’re able to make the big life changes that take over our dreams during early afternoons and late nights – the career we’ve secretly coveted, the country we call home in our mind, the passion we’re longing to pursue – we can still modify the routine of our lives right here and right now, using what time and resources are available.

    Jan sounds like a great example of someone who did just that. You make me wish I could have known her.

  2. Niki*

    This is a beautifully written post Holli! Thank you for it.

  3. Story Teller

    Thanks Chris and Niki for your kind comments. Chris, I love the way you think. While we can all envy someone who quits the day job, sells everything he owns, and heads out to Africa to help the poor, that’s simply not realistic for the majority of us. The secret is to enjoy every step along the way of the journey, by making our ordinary lives extraordinary.


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