When diagnosed 7 years ago with Multiple Sclerosis, my neurologist told me I’d had MS for 25 years. Why didn’t I know it before? He said that I was a master at unconscious adapting – my nervous system and brain adapting, creating new pathways, and my creativity in finding alternate ways to do stuff. Adapting to maintain. Now as my balance and my left leg strength diminish, I’m adapting again. I’ve left my job as well to find a better balance in my life. More adapting. This time it’s more conscious adapting. Building my core strength, compensating for my lack of proprioception (the fifth sense of knowing where your body is), and continuing to meet my personal mission. Before I was diagnosed I composed my mission: Increase the sense of balance patients, caregivers, and clinicians feel as they work together toward best health. So, balance as not falling and life in harmony – yours and mine. Magic levers of best health: balance, harmony, adapting. Onward!
“We must accept finite disappointment, but never lose infinite hope.”
Mutual disappointment can bring out our best selves or worst selves – disappointment in a lover, friend, colleague, hero, business associate, health team member. Underwhelmed by expected results -> disappointment. No disappointment without high hopes. Disappointment drains my immune system and fills my gut like sucking air out of a large balloon. I want to keep the best imprint in my mind of my disappointment partner. I need my best self to have that kind of vision. More than one friend has called me a pathological optimist. My funky immune system can still fire that optimism. Not without cost. My family and friends provide more fuel. Thank you lord. May you all find your best selves when tripping over disappointment. Stay strong. Love yourselves. It’s a magic lever for best health.
Spread the rest of Mom’s ashes with my Dad’s in Grosse Pointe, MI, joined by some dear friends. He was her soul mate. They died 43 years apart. As she would have said, it was a great party. too bad I couldn’t be there. My narrative about my mom is still quite fluid. Sometimes she’s amazing, loving, and engaged – all in. A pathologically optimistic survivor. Other times a reluctant, troubled, somewhat abusive mother. At the end she was a hoot — and the stories follow. Mostly, I think how alike we are. I’m loving, amazing, troubled, optimistic and a hoot. Narratives are coloring books with pages of the same outline, colored with different crayons, paints, markers, within the lines, outside the lines. I’m alternately relieved and uncomfortable with the narrative of troubled mother. Sort of like the narrative of me as disabled rather than healthier than I’ve ever been (except for the MS). Troubled and disabled are true. I just can’t live there for too long – 5 minutes as a time? I’m affected by other people’s narrative about me, especially negative ones. When I’m strong, my positive narrative trumps, when I’m weaker, the negative narratives wear me down. What narratives do you have about yourself and those in your world? How do they affect you and them? Narratives are certainly magic levers of best health. Oh, ma, the narratives of you are spiced with love. I miss them all.
Aristophanes tells a creation myth that places humans of all three genders (androgynous, male, and female) in a primeval state of eternal bliss. However, we grew insolent in our blissful state and refused to properly honor the gods (and even tried to pursue them in their mountainous home). As punishment, we were split in two. Those with a “male” nature (the Children of the Sun) became homosexual men; those with a “female” nature (the Children of the Earth) became Lesbians; and the androgynes (Children of the Moon) became heterosexuals. Navels are the souvenirs of the operation we all went through in being divided from our beloved other half. The myth warns humanity to be careful in always honoring the gods (especially Eros) or we will be hewn in two once more, leaving us to hop around on just one leg. Part of properly honoring Eros is to search for and find our lost half, to be restored to our natural state of bliss. (Thanks to Josh for pointing me here).
My cousin, a Child of the Earth, married her partner of 16 years yesterday. Celebrating were children of earth, moon, and sun. Open, legal, honored. My dad was a Child of the Sun, in the closet to his death 42 years ago. He was present through me, having a blast – and honored.
I went to Beth Israel Deaconess Medical Center in Boston Friday for an outpatient invasive procedure. Pretty amazing. A well oiled production, well-informed, with amazing service. Upon arrival my wife and I received a pager to signal us when the prep nurse would be ready for us. We sat in an area asking us not to eat there to respect people who were NPO (nothing by mouth) while waiting for surgery. In 10 minutes we were called into the OR prep area and told what to expect while we were being prepped for the procedure. They had plastic tents labeled H&P (history and physical), OR consent, Anesthesia consent, site identification, medication reconciliation. As they completed each one, the tents were moved from one side of the table to the other. I was asked which side my procedure was going to be on, what was the procedure I was having (in my own words), I got a bracelet with my ID, one with my allergies, and one on the side of my surgery. The consents were in Plain English, were explained to me, time given for questions. Very smooth, quick, but didn’t seem rushed. During shift change, the hand-off was complete, verbal, and included me. Everyone was amazingly pleasant and personable except one person (who stood out in such contrast). This continued for all nurses, technicians, physicians, and assistants. The surgeon called my wife on her cell phone after the surgery to tell her everything. My instructions were clear, written, and repeated several times. I received a phone call the next morning to ask how I was doing and see if I had any questions. The procedure was not successful. I was so disappointed, but the possibility had been explained to me. The experience was a success. We’ve come such a long way over the years. Thanks all.