I met Norene El on the phone a year ago when she contacted me to ask about my coaching services. Clear about her available resources, she didn’t hire me for coaching but we did agree to stay in touch.
Fast forward 7 months, to near the end of 2013. We connected by email, and low and behold, she was preparing to launch the Inspiring Women’s Global Network, an online resource for women in business living with a chronic illness or “disability.” Like me, when Norene was looking for support for her two seemingly contradictory priorities, her desire to do meaningful work and her need to attend to her well-being, resources were scare.
Norene first noticed a change in her body in 2006 when working at a business resource center. It started with twitching in her hand and pain in her wrists and her joints and deteriorated from there. In 2012 she was finally diagnosed with Young Onset Parkinson’s Disease. Accurate diagnosis was complicated due to a simultaneous, inoperable benign brain tumor. See what I mean about “everyday heroes?” I could end this right here, and the point would be made. Here, again, is someone willing to step up and publicly say, “Hey, this is a real part of my life, and I’m going to find a way to make it work.”
What was the most significant impact on your business/career/life?
The most significant impact on my career was the inability to maintain my traditional 9-5 job. The most significant way it impacts me now is not being able to produce/perform work functions at will. I have difficulty typing & writing and it is almost impossible to sit for extended periods of time or find a comfortable position to sit/work in.
What's been your biggest frustration?
My biggest frustration is that my brain is functioning at the same fast pace it has always functioned, but my body is not physically able to keep up with this pace. Not being able to perform at will has also been a big frustration.
What's been “the gift” of your illness?
1) It helped me get clarity on and prioritize my personal relationships.
2) It gave me the determination to live my life to the fullest and take the time to enjoy the things life has to offer.
3) It presented the opportunity for me to start my own home-based business, which I've always wanted to do.
How did Business from Bed support you in your process? Since we made the agreement, instead of handing the day over to the disease, I ask what we can do. Can we do X and Y? Can we do A, B and C, will you allow me to accomplish that today?
It helped me to make an agreement with my disease. Before, we were working against each other. I don’t remember where I was in the book but once we “agreed to work together” things changed.
Can you give me an example?
I’m partnering with the disease now. Before, I tried to keep that separate. I only wanted to do business on days I felt good. It was either a work day or a disease day. When I’d wake up and was having a bad day, the disease would “win” that day. I’d pull the covers over my head and [that would be it.]
How does your business support YOU?
It’s really helpful for me because it gives me a focus, a purpose. There were times when I felt I’d taken on too much and put it aside. And after a few days, I wondered what I’m here for! I really need this business, too.
Since we made the agreement, instead of handing the day over to the disease, I ask what we can do. Can we do X and Y? Can we do A, B and C, will you allow me to accomplish that today?
The greatest obstacle to integration when illness suddenly challenges your forward movement is what I call “the comparison trap,” a common first response. In the comparison trap, you judge the time before you became ill or disabled as a better time. In Norene’s case this manifested as “work day” or a “disease day.” She may still be periodically frustrated by her limitations, but by making an agreement with her disease, accepting it as an aspect of her life – not her whole life - she’s finding ways to work with it. Rock on Norene!