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threshold

Three Young Adults. 22 Years.

By Advocate, Caregiver, Podcasts, Uncategorized

Interview with Jill Woodworth, mother of 4, three with Tuberous Sclerosis, managing the transition from pediatric to adult medical care. Fascinating, frustrating, heart-breaking, and inspiring. Silos and boundaries,  crossing the threshold, primary physician,  autonomy, self-management. One of the scenarios with the most boundaries, cracks, and thresholds is where young adults with complex medical conditions transition from pediatric to adult care. “If there’s any communication, that has to go through me. Unfortunately, I have to network that system and that’s just really cumbersome.” “I can also help other people that have questions about how to transition. I’m certainly not an expert. But boy, it is something that I wish I always say do it the earlier the better. The earlier you can think about it the better.” “He’s learning. Like I taught him to get his own meds, you know, it’s kind of meeting each one of them where they are and what they can do. But it’s hard.” Read More

Crossing Thresholds

By Caregiver, Clinician, ePatient

Before I officiate at a wedding, I meet with the couple. Getting married is crossing a threshold. There’s a moment before which you aren’t married, after which you are. What’s the difference, one moment to the next?  I’ve officiated at 26 weddings over 40 years. One time, the couple couldn’t say.  I didn’t officiate.

We continuously cross thresholds in our lives and in our journey to best health. A threshold is a beginning, a change – before we weren’t, now we are. We cross a physical threshold when entering a building, a room, a town… We cross a threshold when we enter a community, a relationship, an experience. We cross a threshold as we park our cars, enter a clinic, go for an MRI; when the doctor or nurse enters the room or responds to an email; when we call our insurance company; when someone asks, How are you? We cross a threshold when we feel a lump, hear a diagnosis, throw up, panic, feel pain, fall. Before we didn’t, now we do.

Crossing a threshold can present us with limitless possibilities. Who knows what might happen? Anticipation, excitement, hope. Some thresholds upset our sense of balance, our inertia. Why me? Distraction, hopelessness, annoyance, frustration, fatigue, rage  Crossing a threshold can energize or suck energy, depending on the moment and perspective. Read More

Belonging

By Advocate, ePatient, Family man, Leader

“Home is a notion that only nations of the homeless fully appreciate and only the uprooted comprehend.” ― Wallace StegnerAngle of Repose

“I rest in ease, knowing there are others out there, whispering themselves to sleep, just like me.” ― Charlotte Eriksson

I am the son of Holocaust survivors.   My mother was a German Jew, a refugee in Netherlands spending her teen years in hiding, then a refugee in the United States. Her family had means and connections.  My father’s father was a survivor of the Bergen-Belsen concentration camp and a refugee in Switzerland, then the United States. He had means and connections.  They were both welcomed into this country. Read More

Stranger in a Strange Land

By Advocate, ePatient, Leader, Musician

OMGdpdrmultiface, where’s my wife? I need to be rescued. I can’t do this. I can’t be here. My pounding heart, my rapid, shallow breathing. I can’t be here. Where’s my Ativan?! Have I gotten bad news, a diagnosis, felt a lump? Am I bleeding? Have I fallen? Am I a stranger in the strange land of the medical industrial complex?

No, I’m on a Blues Cruise. I want to play the blues with other amateurs. They are the amateurs that are not headliners. They have blues bands of their own and play regular gigs wherever they live.  I am an old, baby amateur. I’m the only horn player at this session. I don’t know the tunes. I don’t know what key they’re playing in. I am SO way over my head. It could just as well be a gaggle of 8-year old’s trading Pokémon cards. Read More

The Minute Before and the Minute After

By Family man

 

I officiated at my 26th wedding yesterday – a young lady I’ve known since she was born. So honored to be asked. Now I’m in DC to meet the few-week-old son of a couple whose wedding I performed several years ago.  After the 10th marriage I’ve done, I say to every couple, there’s a minute before which you aren’t married and the next minute you are.  What’s the difference? Five of the first ten are still married. All of the rest are still married.  Correlation? Who knows?

Life is a series of thresholds. The minute before and the minute after. We transform during thresholds. I relish participating as a minister, a nurse, or as a human in transforming thresholds. Thresholds are intimate and beautiful. It’s love.  So whether it’s a wedding, at the clinic’s registration desk, hearing good or bad news, or simply witnessing a life moment, how we engage people over thresholds profoundly affects the experience for us and for them. Be present, appreciate, wonder, make a difference. Thanks.

Another threshold

By Caregiver, Clinician, ePatient, Family man

My long-time friend, Glen, died last week. The first thing Glen and I  did together in Detroit, 1969 was to go into elevators and face the back to freak people out and then we got stoned. Glen helped my wife and I set the poles (trees) in the house  we built in West Virginia.  He and his wife had wanted us to move to Maine and live with them, but it was too cold for us. Glen died of brain cancer. His children took care of him for the last six weeks of his life in his home. Not a nurse among them. Read More

Habits – Health’s ingredients

By Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Leader

Habits are the ingredients of health. My chiropractor tells me that my exercise habits should be sustainable. I need to keep them up no matter my life pace. Now I alternate days of 45 minutes of balance and core strengthening exercises  with 60 minutes of recumbent bike riding.  I could do that when working full-time and when not. Smiling and greeting you at a threshold is a habit. A habit for my mental health and yours. My newest habit is to stop putting food in my mouth every day at 7:08p.  Why 7:08?  No reason. This blog is a habit: one idea germ a week, 20-60 minutes of writing every Sunday for 3 years. Helps me keep my disorganized mind in order.

Nothing so needs reforming as other people’s habits ~ Mark Twain.

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