We cross many thresholds in our health journeys: before the diagnosis / after the diagnosis; outside the office / inside the office; before the pain / after the pain; having enough money / having too little money; before being cared by xxx / being cared by xxx; in control / less control; before taking the drug / taking the drug; before surgery / after surgery; walking fine / problem walking; living here / living there, etc. etc. Thresholds of sensations, function, location, relationships, power, information. Disorienting and bewildering – at least unsettling, sometimes devastating. And that ‘s just for us e-patients. What about our family, caregivers, and the professionals in and associated with our team? A veritable ripple of thresholds. Continue reading
Once again, I’m self-focused as I transition from sabbatical to full employment. This too will pass:) After 2 weeks I’m acutely aware of my struggle to keep up my exercise, diet, family time, and music, not to mention all the non-work professional activities that accrued during my sabbatical. Fortunately, my new work environment is both intensely busy, focused, rewarding and actively supportive of work-life balance. My strategy so far is to book family time first, only a little scaled back. Then I’ve cut my music time easily in half, but I haven’t yet figured that out – not cutting any group playing – the combo and big band. Two gigs coming up. The job has a jam once a month. Longer between lessons? Oh, lord. Exercise is harder. Maybe ride the trike every third day and not every other day. Strangely, diet is easier. I’m so much more deliberate about my meals – packing a lunch. I think my diet is better and I’m losing the few pounds I’ve gained during the sabbatical. Longer between massages? I hate to. Makes so much difference in my overall well-being. I will maintain this weekly blog. You all are a gas and a half. Much less TV. What’s suffering most is time with my wife. I definitely need to schedule some date time!! Work-life balance: a magic lever of best health.
First, we listen. The tagline for the organization I work for now. Inspiring! Challenging! As an e-Patient and professional change agent in health care, it’s music to my ears. How do I learn about a new organization in a new environment? How do I listen? At what pace do I jump in and participate? Much of what I hear leaves me an enthusiasing teenager: OMG (Oh my God), that’s fabulous! Every hour I discover something else that I didn’t know I didn’t know. Some of it starts my wheels turning to solve the low hanging puzzles of organizational alignment (everybody rowing in the same direction). But a new guy, is a new guy. He’s curious for only a minute. Then the team work begins. So, I’m listening, integrating (cataloging and categorizing) what I hear and see, building relationships, asking, What can I do for you?, taking a breath, playing some music, hanging out with my grandsons. Life is good. Listening – a magic lever for best health.
Started a new job – first day – a form asked if I was disabled – along with race. Hmmmm. I checked yes. Last week, went to a church function with my mom. Several people with canes and walkers, including me. Buffet style meal. Disabled first in line with gentle insistent assistance. I was guided to that pre-served group. I can manage my own plate with my cane hooked on my arm, but what the heck, they were nice.
According to the World Health Organization: Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.
I have Multiple Sclerosis. I drive to my full-time job, I play my saxophone 4-6 hours a week. I can ride my recumbent trike 10-15 miles at a time. I can walk about a mile, then my left foot drags. I play with my grandkids. Takes me a while to get up from the floor. I can’t run. I can’t dance. I can’t stand in place too long. If I spin around I go kaboom (as my 2-year-old grandson says). I need a cane about half the time, I just don’t know which half. When asked what jungle animal I should be, my four-year old grandson says, one with balance. I have double vision some of the time. Can be annoying when I’m reading music. I have trouble reading white on pastel. I often don’t know where my body is. I will run into the door jamb if I’m not careful. I have to hold on going up and down stairs. So I guess I’m a person with disabilities. It’s a health hat.
As many of you readers know, I’ve been on sabbatical for the past 7 months after being laid off. It’s been a gift to my health – rest, catharsis, grandkids, networking, exercising, music, writing, teaching, exploring, and thinking. I’ve played in the world of entrepreneurs and start-ups, simulation, mobile health, and e-patients. Attended 5 conferences (New Orleans, Orlando, Raleigh, Washington, Boston) and met hundreds of new people. I spent 5 months working with a team designing simulation tools for patient and provider experience and decision-making. You might know simulation from video games and mannequins. Many lessons for health care in the start-up world. Refreshing energy. Taking an idea to a product to market. I also help start a monthly mini unconference called Pain Points in Healthcare with my friend, Dr. Kal Kalwa – networking with young entrepreneurs. I’m now a patient reviewer for PCORI I’m learning about usability – the intersection of technology and work/life flow. I’ve written for the Society of Participatory Medicine. I interviewed for many jobs that could be exciting, but didn’t thrill me. Wanted to be a leader in a mission driven, patient centered organization eager to utilize my unique combination of skills and passion. My friend, Bevin Croft, found an opportunity for me. After a long courtship, Monday, I start as VP of Quality at Advocates (check them out). Their handle is ‘First, we listen.’ Don’t you love that! My portfolio includes regulatory, improvement, experience, and informatics. So a new chapter, another hat. I plan to continue to blog at least weekly. Maybe a fresh perspective. Thanks for traveling with me.