My idiopathic rebellion

I have an idiopathic condition. That’s not the same as being a pathetic idiot, but it’s close. It refers to an illness with an unknown origin and, often, an unknown cure, as in idiopathic epilepsy. It can also mean an illness particular to an individual. (I’m the only one in the whole wide world who has this—so treat me nice!)

I recently came across the word “idiopathic” in Sarah Ruhl’s memoir, Smile: The Story of a Face. It chronicles her journey with Bell’s Palsy, a condition that causes one side of the face to droop and makes a normal smile impossible. Causes and cure both unknown. Current reality, a continuing trial.

Sarah Ruhl is a relatively young woman. We all know by now that disease does not respect age. It attacks babies and young women, not just old crones. But we also know that one of the things about aging is the subtle (or non-so-subtle) rebellion of body parts. Ears, eyes, back, feet, even, sadly, the inner workings of the mind—it seems there’s always something going wacky.

Six years ago, I noticed something strange about my body. After a morning of work (at this time, research and writing), I sometimes experienced a pressure in my head, like a bad head cold. Dizziness accompanied the pressure and I felt disoriented. It was only occasional, so I decided if I ignored it, it would go away.

It didn’t go away and the occasions grew more frequent. When I mentioned it to my primary care giver on a routine annual visit, she told me not to worry, that old people often feel dizzy. I smiled on the outside, but inside I was swearing.

After a year I rebelled and insisted the doctor do something, if only refer me to someone who might know what was happening. She did. Over the course of the next two years, I saw an ear-nose-and-throat guy, a neurologist, a sleep specialist, an audiologist, an allergist, and a physical therapist; there may have been a few others. I underwent all sorts of complicated tests that made me very grateful for a good medical insurance plan.

At the conclusion, all the doctors and all the tests said, “We can’t find anything wrong with you.” My primary-care-physician told me, “I’m sorry. There’s nothing we can do for you.”

Grim doubt set in. Was I imaging all this? Was I becoming psychosomatic? But the dizziness continued. Of necessity, I gave up driving. I clung to my husband when walking down the hall. I became truly pathetic. Not myself at all.

So I did the next thing. I changed medical plans and doctors. God’s providence led me to a lovely doctor in a large research hospital. She was the head of the headache department (I didn’t know there was such a thing) and a specialist in dizziness. Can you imagine? Being in the middle of the pandemic, we had our first three visits on Zoom. Previous to our first visit she had read my case history and studied all the tests. When we met, she told me she thought I had something called vestibular migraines. Scary name. But—it was a diagnosis, at long last. The other encouragement was that this doctor actually believed me. She took my symptoms seriously. She didn’t think it was all in my head.

Except, of course, it was. The condition is a malfunction in the vestibular system of the inner ear, the part of the body that senses direction and speed and regulates balance. Causes and cure are still unknown. Which means, even though it has a name, it’s still idiopathic. No getting away from it.

Being part of a research hospital, my doctor participates in ongoing investigation of this and other mysterious diseases. I’ve given my permission and now I’m part of a large database as she records the experimental medications she’s giving me, along with my reactions. So far we haven’t come up with the best way to control the symptoms, but I’m glad to be doing something positive. So, I have hope. Most days.

My situation is bearable, comparatively speaking. Several friends are facing cancer, and two are living with chronic Lyme’s disease, one a long-time friend my age and the other my 18-year-old niece. When I’m having a hard day, I try to remember that maybe I don’t have it so bad.

Sometimes I remember that. Sometimes I don’t.

The increasing rebellion of body parts is one of the greatest challenges of aging. So, we do what we can—make healthy live-style decisions, take our meds, and pray that, whatever our condition, we have the grace not to behave like pathetic idiots.

Lord, have mercy on us all.

Hunkering down

In May 2016, with the help of our friends, we moved the last boxes of hoarded treasure over to our new home in the trees of our chosen old growth forest. We would finally experience life in a retirement community. This was no longer a prospect for someday out there. It was to be our home. Now, and probably for the rest of our lives. Both a sobering and giddy thought.

Our two-room apartment is on the fifth floor. A wall of windows overlooks trees, hills, and an expanse of ever-changing sky. The view certainly welcomed us home.

(We’ve moved many times over the years. My first question when about to occupy a new place is not about size, room arrangement, or other practical issues—Hal asks those questions—but what can I see out the windows.)

One of our first experiences as newcomers was writing the largest personal check of our lives and handing it over to the smiling administrative assistant. Actually, we were happy, too, partly because our old condo had just sold, making this adventure possible. But most of our joy was based on faith. This was the right move. Wasn’t it?

In truth, it took a while to actually feel at home. One thing I was not expecting was being overwhelmed at the number of white heads, walkers, and wrinkles everywhere we looked. We were surrounded by old people! This is pure irony, of course. Who did I think I was? Or was becoming?

This strange distress showed me that I had brought with me my own stereotypes of old people, and they were not all positive. For the past few years, I had squirmed when I thought other people were ignoring me, patronizing me, or classifying me as insignificant because I was over 60. And here I was, projecting these same attitudes.

The cure for stereotyping is getting to know people. It’s also the best path toward feeling at home in a community. Slowly, we discovered that our new friends and neighbors were not old people. They were just people. Interesting, sometimes complicated, and often very funny people.

Our fifth-floor neighborhood was even better than the view at helping us feel at home. The larger retirement community is divided into different neighborhoods, each a microcosm of the whole, with its own unique ways of living together. We’ve felt so blessed to be part of the fifth-floor family. From the first day, people went out of their way to welcome us: a bright sign on the door, a basket of goodies (healthy stuff like dark chocolate), but mostly people introducing themselves, inviting us to eat with them, and leaving us alone when that’s what we needed.

The wild-life in an old growth forest can be incredibly diverse. We discovered that to be true on the fifth-floor. As we got to know our neighbors, we found that we were surrounded by some rare and beautiful birds. My red-headed neighbor across the hall was one of the most colorful and enthusiastic. We discovered that in our early seventies, Francie, Hal, and I were considered the kids on the floor. Most of the others were in their eighties and nineties, some approaching 100 years old. For me, still getting used to being 70, someone calling me a kid was not at all offensive.

Down the hall, Bob and Connie invited us in for a visit. We discovered that Bob had served more than 25 years fighting forest fires in California, not as a volunteer, but as a fulltime employee of the Forest Service. 

On the other side of the floor, we got reacquainted with Marie, a friend from college days. She was still as well-dressed and stylish as I had remembered. She showed us photos of herself and her late husband dressed in their helmets and leather suits; they had traversed the nation numerous times on their Harley-Davidsons. As if that were not enough, Marie had also been a professional clown. People have a habit of surprising me.

We met Phyllis who, as a young adult, had served in Africa as part of the Peace Corps. She and her husband spent the rest of their lives active in work for social justice. Now widowed and less mobile, Phyllis continues to change the world by email from her armchair. We met retired teachers, pastors, missionaries, and truckers. Everyone a treasure trove of stories.

Now that we’ve been here on the fifth-floor for five years, it still feels like a family, but in a more realistic sense. Any family has its share of squabbles and challenges. Some people are naturally grouchier than others. Others may not be grouchy on the inside; they just look like it. Sometimes political views clash, and we have to learn with whom we should not mention certain issues. So, we learn to deal with it. Just because we’re all a certain age doesn’t mean we’re all wise or mature. But this gives friendship the chance to grow deeper, become more tolerant. I guess I’ll never stop learning how to do that.

With all these rare birds flying around us, we’ve finally hunkered down, learning to be at home in this old growth forest.

A really old prayer

Recently while going through my files, in a folder entitled “Good Stuff,” I came across this old prayer on growing older. I vaguely recall downloading it from a friend’s Facebook page. It’s sadly undocumented, other than the note that it comes from the 17^th century. So I can’t tell you who wrote it and under what circumstances. Maybe he was a country parson. Maybe a Benedictine monk penned it in the silence of his cell. Maybe it comes from an early Quaker. Maybe (a slight maybe) he was a she?

At any rate, I love this prayer. While old, it has an uncanny contemporary feel.

Prayer on Growing Older, 17^th Century

Lord, Thou knowest better than I know myself that I am growing older and will someday be old. Keep me from the fatal habit of thinking I must say something on every subject and on every occasion. Release me from craving to straighten out everybody’s affairs. Make me thoughtful but not moody. Helpful, but not bossy with my vast store of wisdom—it seems a pity not to use it all, but Thou knowest, Lord, that I want a few friends at the end.

Keep my mind free from the recital of endless details; give me wings to get to the point swiftly. Seal my lips on my aches and pains. They are increasing, and love of rehearsing them is becoming sweeter as the years go by. I dare not ask for grace enough to enjoy the tales of others’ pains, but help me to endure them with patience. I dare not ask for improved memory, but for a growing humility and a lessening cocksureness when my memory seems to clash with the memories of others. Teach me the glorious lesson that occasionally I may be mistaken.

Keep me reasonably sweet; I do not want to be a sour old person—some of them are so hard to live with and each one a crowning work of the devil. Give me the ability to see good things in unexpected places, and talents in unexpected people. And, give me, O Lord, the grace to tell them so. Amen.

Yes. Amen. Good stuff, indeed.

Retirement or engagement

 

As I write this, on the other side of the world Russian troops are bombarding cities in Ukraine, and countries around the globe are on alert. An unspeakable threat of nuclear war wavers on the margins of sight.

At times it overwhelms me. Other times I forget about it altogether. Life just goes on.

Last week we attended an extended family gathering to celebrate Celeb’s 16^th birthday. Food, presents, the hubbub of multiple conversations, the chaos of excited kids—it all contributed to the party atmosphere. But looking back on the evening, I realized that no one even mentioned Ukraine. I certainly didn’t. Didn’t even think about it. And now I’m wrestling with guilt.

So I ask, am I becoming paranoid as I age? Would bringing up a world crisis even have been inappropriate? Shouldn’t life just go on? Didn’t Caleb deserve his party?

Another thing that acerbates my wrestling is life here in the retirement community. Our needs are so well taken care of. It’s like a place of refuge where we’re sheltered from the trauma of the outside world. As I search for metaphors, I come up with a bubble, a cocoon, or an isolation ward. These are all probably exaggerations, but they contain truth. Ongoing pandemic restrictions add to the sense of separation.

I’m sure this separation from the world is not the intention of those who administer this facility. Protection, yes; deliberate isolation from everything else, no. And yet silence over the crisis in Ukraine troubles me.

The other evening Hal and I watched the evening news, as usual, taking time to pray afterwards. As we prayed, someone knocked on our door, rather timidly as though hesitant to disturb us at this hour. It was a single lady who lives in the apartment just down the hall. She had also been watching the news and was experiencing fear. She just needed someone to talk to. So we talked and prayed together. She may have been a little more peaceful as she returned to her rooms.

The next day the community-life director visited each residence with a small gift and the activity calendar for the following month. As usual, many educational, social, and service opportunities have been planned. That’s good. It’s one of the advantages of living here.

She then asked me if I had any concerns, and I told her of my dis-ease with the lack of any formal attention to what was happening in Ukraine and that the planned activities didn’t include a means of talking about the crisis, better understanding the situation, and facing it together. She listened respectfully, suggested the prayer meeting committee might organized a special Zoom meeting, and said she’d bring it up with the staff. Later that week the community newsletter announced there would be several minutes of silence for world peace the following Monday. It seemed like a weak response.

This is a Continuing Care Retirement Community (CCRC), and as such includes neighborhoods of those in assisted living, a memory-loss unit, and the health center where people need 24/7 care. The staff needs to address the needs of these neighborhoods, and for most of these residents, protection, shelter, and facing the end of life are the prime issues. But the rest of us residents, the majority, are classified as independent, and we have different needs. Some of us need to keep connected to the world around us and respond to what’s happening.

The responsibility for our responses ultimately rests with each individual, in spite of the protective atmosphere of a retirement center. And the struggle for an appropriate response is certainly not limited to retired people. Maybe it has more to do with being human, privileged, and geographically removed from the suffering.

This leads me to a comparison of the words, “retirement” and “engagement.” In a certain sense, they’re opposites. “Retirement” carries the connotations of withdrawal, receding, moving back, even going to bed. A retiring person is exceedingly shy. Of course, a common connotation is simply a planned withdrawal from one’s working life or profession. A retirement community is composed of these persons. Most of the residents here are not at all shy, although most of us enjoy an afternoon nap.

“Engagement” is active and involved. It refers to a moving forward, facing an issue, joining other people, and doing stuff. It contrasts to the basic meaning of retirement.

So, can a retired person be engaged in the life around her? Can he be actively involved in the issues of the day? Should she want to know what’s happening in Ukraine and what she can do about it? These are all obviously rhetorical questions. Even so, life in a retirement community requires extra effort (and a little help from the institution) to engage in the world outside.

 Query: How do you face the tension between retirement and engagement?