Looking inward, one
Sees the vast intricacy
Of the universe.
Looking inward, one
Sees the vast intricacy
Of the universe.
“The realm of the fairy is a strange shadow land, lying just beyond the fields we know.”
If there must be fire,
Let it be lit from the torch
I always flinch a bit every time I hear someone described as “normal,” because there are as many definitions for normal as there are people to make proclamations about it.
But, lately, thanks to some health issues, I’ve seen the pursuit of normalcy through a different set of lenses, and the view is new. Normal isn’t about how other people see me. It’s about how I see myself in relation to my environment.
Taking selfies while I dance
I’ve been dancing with Parkinson’s disease for more than ten years now, and rheumatoid arthritis for only a few months, and I find I am constantly checking in with myself (taking internal selfies, if you will) to determine how “normal” I feel on any given day, hour, moment. Normal, in this case, means how close I am to not feeling abnormal. Normal is the way I feel when everything feels so right that it wouldn’t occur to me to check on it.
These days, when my inner selfies look “normal,” I know things are going right. It means all the med tweaking, nutritional endeavors, exercise efforts and will of the gods have all aligned for a time. It feels glorious. Other days, not so much.
Unhealthy self-absorption! you may say to all this internal poking about, and it can turn into that. But the truth is, intentional self-awareness is an important part of managing chronic disease. It’s the only way to stay ahead of, or even in step with the dance, if for no other reason than to be able speak intelligently to your doctor(s) about it. But there are other reasons.
Dancing in Public
I’m a pretty private person, and I used to keep all of this under wraps. I was desperate not to have my illness become my identity. With few exceptions I was always “fine,” even with my nearest and dearest. This worked well for some time, until it didn’t. When I found myself searching for normal pretty much every day, I knew I wasn’t going to be able to deny this away. I needed a dance partner.
So, with some reticence, I became a sharer. My immediate family and a few long-suffering friends now hear more about my inner gyrations than (I’m sure) they want to. My groans about another sleepless night are always met with a sympathetic murmur, but let’s face it, it’s boring. They know it. You know it. Frankly, all this internal scrutiny is boring to me as well, but it is essential to keep up with the beat.
I am conscious of keeping the “Wow, that was weird,” comments to a minimum, but the truth is, if I don’t mention it (mostly to my endlessly patient husband who understands these things) I know I might be missing something important that could either set me back, or lead me back to that illusive “normal” more often. So I share.
And, I’ve come to a few conclusions.
Living with a chronic illness, or caring for someone who does, requires patience and kindness, on and on, day after day. It’s the sheer relentlessness of it all that wears you down.
If chronic illness is your constant companion, stay aware and diligent. It’s not self absorption that leads to constant inner selfies, it’s self-preservation. And don’t be afraid to allow other people into your world, beside your docs. Your medical team can only do so much.
Open the door. Let your family and/or friends that love you, help you out. The urge to try to act “normal” (stoic, fine, in control) under these circumstances gets harder and harder, and in the long run can be bad for everyone. For you, it can lead to alienation from the people you need the most, and for them, it can look like you are shutting them out. And remember that they need taking care of, too.
Caregivers (and I’ve been in those shoes, as well) already know that patience and kindness are essential, but it’s as important for you as it is for the person you look after. Any air traveler knows that if the oxygen masks come down during a flight they instruct parents to put theirs on before they put them on their children. The same holds true here. if you don’t take care of yourself first, you won’t be able to keep up with the dance either.
Finally, for all of us, frequent selfies and active listening are essential. Be alert and talk to each other. Keep looking and listening for things that are new or different. New patterns may emerge, new details or complaints you may not have felt or heard before. Even a little thing could signal a new underlying problem or, hallelujah, a return to a state resembling “normal.”
Keep on dancing.
Public Domain Photo: Calla Travis School of Dance annual May Dance, Grand Rapids Michigan 1936. Courtesy of the Gerald R. Ford Library.
This morning, two days before Thanksgiving, and before my coffee, I’m waiting for the elevator at work.
The doors open. There are a few people inside, none of whom I know.
And I hear this:
“…and she tried to cut off her hand.”
Everybody looks at me wide-eyed, like I have three heads.
I get on in silence. Nobody moves.
I turn to face the door, and after a moment I hear,
“So what are you doing for Thanksgiving?”
Illustration by Edward Gorey, from “The Recently Deflowered Girl, The Right Thing to Say on Every Dubious Occasion,” by Hyacinthe Phypps, Mel Juppe and Edward Gorey, 1965, Crown.
I was privileged recently to be a guest at the breakfast meeting of a venerable local women’s business group. While photo above is not that group (although it might have been a few years ago), it represents the spirit and energy I encountered when I was with them.
This organization was founded 36 years ago by some courageous, upwardly mobile women executives who were climbing the corporate ladder without a net.
When this group was formed, women in the ranks of upper management were few and far between. Those who did make it were often buffeted by the wind of the doors to the good old boys clubs shutting in their faces. The savvy ones soon discovered they were much better served banding together than battling on solo, in competition with each other, in boardrooms full of suits.
This is a lesson still hard learned by many ambitious women, even now. During my own 30 plus years in business, 20 of that in corporate America, I’ve observed first hand a well entrenched, every-man-for-himself attitude (and I use that expression very deliberately) that continues to leave high heel marks on the backs of legions talented woman. I sincerely believe that this behavior has led to a poverty of spirit in the work world that has diminished us all.
The once conventional wisdom of the “You’ve come a long way, baby,” era succeeded in pitting women against each other, particularly in business. You had to act like a man in order to compete in a man’s world. This has proven to be a badly misguided notion for women, and it has not served us well.
In short, business is tough. Life is tough. Women need each other. We all need (dare I say it?) kindness, mentoring, a safety net. We are much stronger in congress than we are alone. And when we make it our business to lend a hand to others along the way, we “raise the boats” (a favorite piece of corporate jargon) for us all. And I mean everybody.
Back to the breakfast.
Being a woman of a certain age with long tenure in the corporate world, I assumed I knew what to expect at this breakfast meeting: a great, but short, networking opportunity followed by an informative talk on investing or the mysteries of social media, then a quick exchange of business cards and a hasty retreat to get to our waiting jobs. That’s not what I got.
What greeted me was a smallish group of women of diverse ages, sipping coffee, laughing loudly and calling out to each other across the room. It was clear these were old friends, glad of each other’s company. For this guest breakfast they dispensed with the usual speaker in favor of a program that illuminated the work of the club by shining a light on its members.
They are, not surprisingly, all remarkably accomplished. But beyond that, there was something different going on here.
One by one, each woman stood, introduced herself and gave us a speed dating picture of her life, professional and personal, and her involvement with the group. This group includes current and former business owners, corporate executives and business consultants in a wide variety of arenas, as well as representatives of non-profits, a minister, writers and artists. It was quickly clear that the work of this organization has gone way past the singular focus on business success that I had expected
Some of the women were between jobs. One was striking out on a new and challenging path. Others had met the downside of the double-edged sword of professional success that emerges when you hit fifty. Some were retired and still going strong in their communities, some were going through difficult personal challenges. They were all waiting to hear if the baby of an absent member had arrived.
The introductions also gave glimpses into the rich avocational lives of these women, who serve their families and communities in a thousand different ways, lead spiritual lives, do marathon bike rides, create art, write books and fly airplanes. We are (and always were) so much more than our jobs.
As I listened, it became clear that this organization has continually transformed itself to meet the needs of its members as women’s lives have become more complex and multifaceted.
These women have certainly benefited greatly from the expertise, camaraderie and emotional support they provide to each other, and so, by extension, have their workplaces, communities and families. The early lessons learned about coming together to make it in a man’s world have evolved into the knowledge that the energies and capabilities of women brought together in support are formidable indeed.
This is one group of remarkable women. But let me be clear here. I hold them up not to single them out as special, but to present them as an extraordinary example of what any group of women can do when they come together with a purpose and a dedication to support one another.
Every woman I know is remarkable in some way. Most women grow in confidence and capability when they know they have a strong support system behind them. Sometimes families or friends, or even their workplace can do that, but often they cannot.
When we weave our safety nets together, it’s a lot easier to prevent free falls.
Public domain photo.