Jan's Story (17 page)

Barry, I am so sad about the whole thing, but we have to be honest about where Jan is going, which is nowhere, and you still have lots of life left. I am hopeful that you will find a woman with whom you can share your life. It would be good for you, and couldn't possibly hurt Jan, who would never know or understand.

This progression from Jan to someone else in your life might take a few years, but nevertheless, it could happen, and I pray it does. I also hope that your taking care of her can continue, as we would all be lost without it.

“I have ever since (my wife's death) seemed to myself broken off from mankind; a kind of solitary wanderer in the wild of life, without any direction, or fixed point of view: a gloomy gazer on the world to which I have little relation”
~Samuel Johnson

We have so many measures of time; hours, days, years. Look at a clock and you can know, with certainty, where you are in time with the rest of the world. It is exact.

With Jan, The Disease decided the timing of change, the pace of her departure, and it will decide when she will reach the final destination. So when people suggested that I consider opening myself and my life to include someone else, there was no timetable for how long I had been without Jan, and no timetable for when I might begin again, if that was my decision. It reminded me of the unspoken rule The Disease taught me: When there is no rule, make one up as best you can.

Jan's mom, in her extraordinary e-mail, gave me permission to choose what was next in my life, but with a thought that it may be years before this happens. I had a similar, private thought that I wanted to scream to the world: It has already been years! And I don't even know how many.

A lot of people started their clocks on an “acceptable” separation from Jan as May, 2008, when I placed her in the assisted living facility and then returned alone to Asia to complete my CBS News contract for covering Asia until it ended in the fall of 2009. The May separation was clean, neat and there was a clear physical break.

And it was wrong.

The intimacy was gone years before that benchmark, long enough ago that I couldn't remember. And how many years had it been since I lost Jan as a friend and wife and partner in a marriage, to be replaced by someone who needed me primarily as a caregiver?

When Diane suggested it was time to move Jan into assisted living, my first reaction was relief. Could the never-ending days of caregiving finally be over? Could the years of exhaustion and Sisyphus-like pushing against The Disease be finished, the struggle that would end in defeat no matter what I did? And so when these few close friends suggested that I find someone else, there was also an odd sense of relief, that there could be life with someone new. For so long, I hadn't considered life beyond what The Disease had stolen.

And then came a loud, insistent banging at the door and I opened it and in walked guilt. Guilt is a wide-ranging, hardworking thing. It twists decisions that we may instinctively know are right and makes them feel wrong. It hobbles our efforts at positive steps, and most days it puts in a few hours of overtime and stops us from taking those steps.

Guilt asked the key question: Was I a bad person for wanting love back in my life? It was not about sex. It was about no longer having a friend and partner and companion, no longer having someone to share the day with. Just thinking about it seemed a violation of what Jan and I had once been, a sin against our togetherness. After all, she couldn't help what was happening to her.

And in time, I realized that I couldn't help that I wanted a chance to love again. I didn't run out to find another woman. Instead, I ran out to find therapists to help me stop thinking or wanting this. There were psychologists, a hypnotherapist, and the psychiatrist, and phone calls to others who were on this same journey and could understand the guilt. And along the way I shared the tears and the terror that I felt I was a bad person because I was thinking about and wanting this.

And yet, their advice was remarkably similar. Leave the guilt behind. They suggested in their various ways that I had to decide this for myself, to focus on my own timing, and accept that my being alone had stretched across years even when Jan and I were together. And more than one warned me to brace myself for those who would not understand, those who would judge.

The professionals suggested that I try a new way of thinking; that this was not about Jan, it was about my life. I had not caused Jan's disease, I could not delay it, ease it, reverse it, stop it. They were wise, but this was not what I was asking of them. I wanted them to help me stop these thoughts about filling the emptiness with someone else. I found myself wandering into churches. I wasn't seeking God but absolution. A cleansing of my sin, because it seemed a sin, this wanting to be held again, wanting to feel the joy of holding someone I loved, wanting to bring pleasure by making someone else laugh.

Wanting to laugh.

For the first time since that night at Jan's apartment, that night I believed we would be together for the rest of our lives, I had to consider taking her out of my life equation and going it alone. Do I listen to my guilt, or to my gut? Whatever I did, there would be those who would accept and those who would accuse. I got a dose of this the hard way, a harsh rebuttal from one woman who stared at me and stated bluntly that I was “trolling for women.”

I understand the sentiment. There were many who wanted an emotional death for me as slow and final and lonely as Jan's. For a time, I wanted the same fate. And yet, I did not think Jan would have accepted this from me. If loving her caused me to follow her into oblivion, it would have saddened her beyond measure. I can say, with faith, that she loved me more than that. And I, her. Had it been different, had I been the one with The Disease, I would never want her sucked into this darkness to remain there forever.

So fighting back took on a new resolve: I would not surrender to The Disease. Jan's life had always been about laughter and smiles, optimism and vibrancy, and about the sheer joy of living. This is the part of her that I now needed to honor. Friends saw this first, and in the seeing, they helped show me the way.

Dear Barry, I have wondered about this issue of you and relationships for a long time. You need love in your life. I think you should follow your heart. Jan will always be special to you and no one will ever replace her. But if she was sentient, she would want you to feel loved. You have my blessings and warm wishes and you should move forward.

There is simply nowhere else to go.

Hugs,

Amy

“We can live without religion and meditation, but we cannot survive without human affection.”
~The Dalai Lama

I vacationed at our house in northern California for a while, a recess after one of my periodic visits with Jan in Seattle. This was becoming a good habit. I could see old friends for dinner by night, and by day sit and look out across the water and think.

Or perhaps better, not think. Just let the hours slide by. After a few days, I took a Sunday afternoon drive down the coast to San Francisco and stayed overnight with friends Kit and Russ Yarrow before catching the Monday afternoon flight to Tokyo. Wise friends.

We had dinner and then Russ called it a night, because he was up early the next morning facing a long commute to work. Kit and I sipped wine. I told her about how Jan was deteriorating, how hours after I left her I got an e-mail from a friend saying Jan was back to being angry because, Jan insisted, “she hadn't seen Barry in a year.”

By now, I was growing accustomed to the changes and this one had been unfolding for a long time, so I could talk about it with Kit in a decidedly matter-of-fact way. I was a man alone, and this didn't meet with her approval. She brought her computer into the dining room. “Why don't you join an internet dating site?”

My initial reaction was to laugh out loud at her. Me? “Mr. Not A Good Catch?” I also thought internet dating sites were for adolescent techies and teens, or places where men went stalking women, the scary stuff of tabloids. I just assumed that someday I would meet someone; I just never quite focused on the “how.” Besides, I had been married and out of circulation for twenty-five years and had no idea how people met these days.

When I met my first wife and again in 1984 when I met Jan, there were dates and dinners and slowly finding out about each other. In person. I get this method. But e-mail has replaced people chatting on a front porch, walking in a park, meeting for coffee, or over dinner.

Kit went to the website and signed me up. Whether it was because I'd had enough wine, or I'd had enough loneliness, I let her do it and watched with a fair dose of concern and, in all honesty, a bit of curiosity. We decided that my marital status was “separated.” The form asked about one's “best physical attribute” and to my red-faced shame she answered “butt.” I mumbled out an embarrassed thanks and as soon as I could, changed it to “hair” which I still have, thankfully.

What would people think? Did I dare mention that I had a wife with Alzheimer's Disease? And why wasn't I a good catch? I was well-traveled and had met people all over the world. Wasn't there some value in that?

A credit card number entered into the billing part of the website and, in that much time, I was now a member of the new generation of people who don't meet at churches, classes, or the office. You put yourself where anyone, everyone can see. Kit picked out the password: Phase2.

I didn't post a picture because I didn't want people from my office tittering over my meek efforts. And the profiles were screened to keep out information like an e-mail address that would reveal a person's identity.

I discovered that the dating site was very big on confidentiality and would send e-mails through its own system, sanitized, unless two people decided to trade information on their own. It was a safety feature of which I heartily approved. It would also let me look at profiles sorted by age, and I wanted any selections to be close to my age. There were a lot.

The process was oddly Victorian, a throwback to the era of writing letters one to another. It was learning about people by sending notes before you actually met, using the written word to best describe yourself and learn about their skills at describing who they were. The internet dating site itself, with its careful rules, was like a chaperone; there as long as you wanted it. And it was up to you to decide when or even if you cared to meet someone by phone or in person.

When I got back to Tokyo, I wrote my own profile and made strict rules for myself. If there was an initial contact, meaning if I wrote someone or they wrote me, and it was my turn for a response, the first thing I explained was that I was “separated” not by love's failure, but by Early Onset Alzheimer's Disease and that Jan was now in an assisted living facility.

For some, that was enough for a quick goodbye, if I got any response at all. For others, a matter of sympathy and the beginning of a discussion. As I further explained about Jan, some lost interest. It was too complicated and maybe, at the outset, I really didn't sound ready for this.

Yet, I didn't have the in-person chance to meet people because I was so far away and in very different cultures. If I was going to meet someone in San Francisco, Minneapolis, or Tokyo, it had better be someone interested in having dates that were about e-mails or long phone conversations.

I knew that many of my friends wanted me to try this because meeting people, no matter how it's done, can lead to finding that special one. But there was a loud nagging voice inside me. Could I allow anyone else in my life besides Jan? She would be here physically, for years to come. And I would always take care of her because I had loved what we had been to each other. But how hard do I hold on to what was? It was complicated. I was battered by questions from myself that I could not answer.

How long do we wait before we take the next step? There are no rules. I was making it up as I went along, and that was far more dangerous. I was guiding me. It was like the line about lawyers … a lawyer who represents himself has a fool for a client. Was I being a fool for giving myself permission to try this … for just myself?

It felt incredibly self-centered. I sat alone one night in the living room of the apartment in Tokyo, turned out the lights and closed my eyes and remembered how Jan had once been there, how she had chased away my loneliness when she first came into my life. Now, The Disease had taken her away, and her going made it more bittersweet for knowing what we once had.

I knew myself well enough to know what would happen if I stayed alone. I would dry up. I would cease to be. I wanted to love and be loved because that is how we feel alive as human beings, and it had been a long time since I felt alive. I had taken care of Jan as she diminished to the point that, mentally, she was almost a child. Now she was even less than that, and tomorrow she would be worse.

I decided. This was the moment to take a deep breath, sit up straight, brace myself for the anger of those who would not understand, draw strength from those who would. I felt like a diver standing on a cliff who feels terrified at how far down the water is, but vowing to make myself do this. I stepped off and plunged, with no idea what would happen when I hit the water.

It started with posting a profile. It was actually more frightening than diving off the cliff. There were responses that were lovely and understanding. There were responses that said I was not ready. There were responses so desperate that they scared me.

One was sweet but not hopeful from a woman in Denver:

Hi Barry,

Thank you for your lovely note. Japan would be the definitive long distance relationship! You sound like you have had an interesting life and have many stories to share. I'm so sorry about your wife's illness. How very difficult for you and your family. What a loss. Tell you what; if you find that you are going to be in Denver visiting your daughters, let me know and maybe we can share a glass of wine. I'm not ready for the challenges of the distance, but since you are a journalist and must enjoy writing, the worst case is maybe we could be pen pals!

Pen pals? I write all day long for a living and I didn't need more pen pals. However, Denver was a city I planned to visit often, as I answered:

I currently live in Asia but travel back to the US regularly, being drawn by family and a year-old granddaughter with a smile so bright you could land a 747 by it at midnight. Maybe I'm prejudiced?

Responses from others were more forthcoming, wanting to chat on the phone or meet when I was next in the United States. I went slowly and carefully, with all the confidence of a blind man walking through a minefield. There were a couple of lunches with women during visits to the US where I learned that photos and people don't always match. And there were phone calls— can they be called first dates?—sharing stories where you try to learn about someone from their voice and what they want to talk about.

There were people I met through the website in, of all places, Tokyo, including the ax-murderer woman. She wasn't the ax-murderer. She was worried that I might be. I discovered this on our first date over dinner. I had invited her to see my apartment, which was about a hundred yards from the restaurant. I later learned this was a big mistake on my part, but the offer came from ignorance and being somewhat rusty and nervous about all this. She said she couldn't come up because she didn't have my address and, therefore, hadn't left it with friends in case something happened to her.

Ah, I joked, as in what if I'm an ax-murderer and your friends wouldn't know where to look for the body, right? Some joke. That was exactly what she meant and so, chagrined, I walked with her for a while in the brightly-lit restaurant district and left her at the subway station. I walked home wondering what part of my well-traveled demeanor or Virginia gentleman charm made someone think I might be an ax-murderer.

In the end, I decided she was right in being self-protective and I apologized for being wrong, possibly pushy, and unforgivably ignorant. Before our next meeting, I sent her my address and phone number and invited her for dinner, which I cooked at the apartment. It was a lovely evening and I am glad to report that she survived with all limbs intact.

As for my cooking, it apparently didn't impress her because I never heard from her again. More proof that I was a bad catch, at least to some.

And all of it was part of learning.

It didn't stop there. One woman invited me to fly off to Madrid with her. We had talked—once—on the phone, and she had detailed the many affairs she'd had, which happened because she married her husband but never felt passion for him. I told her Madrid was a wonderful invitation and could I take it under advisement? Yikes.

I also kept up with that long-distance pen pal. I sent her a note that included this:

A benefit of this e-mail is that I can attach a picture of what I look like today … no more hair, teeth gone … the real me.

In return, there was this:

It's a great picture. You've got wonderful silver hair (it is yours, correct?) and I assume that when I saw your piece, that you also had teeth—you know TV and all …

And here I went again:

The hair is NOT SILVER. Good grief. It is … well … let's see, more like Danish, you know … really, really light blond, right? Platinum blond? White blond? Okay, maybe a touch silver, but just a touch. And I wonder to myself, when did that happen? Last week it was all brown and I was all young and now, silver hair. Let us hope that there is wisdom that comes with it.

Wisdom would be needed, for there was sadness in this person as she shared:

     
You asked, so here is my story … I was married at twenty-seven (old at that time) and my husband was twenty years my senior. He was always athletic (played pro football and semi-pro baseball), and when I bought him his first really good bicycle, he was smitten. He did seven rides across the country and was all set for a ride on the highest paved road in the world—sixteen-thousand feet in Peru. He was training on Mt. Evans, the highest paved road in North America— fourteen-thousand feet and right outside Denver, when he hit some really fine sand and gravel, going downhill on a road bike. The state had put an emergency call box right on the turn (rather than twenty feet away near the ranger station).

     
To make a long story short, he started to skid and hit the box. It tore his aorta and he died instantly. They never called me, but I knew something was wrong. I won't bore you with the rest of the story, but suffice it to say that I was happily married and still having fun. Another little detail is that we also worked together.

     
In one moment, I lost both my husband and business partner, and my life changed in ways I couldn't have imagined.

It seemed we were partners in loss. Hers was sudden.

With Alzheimer's, I explained, it is a slow drip of grief, and I was trying to fumble my way through life with that slow drip going on every day.

We traded phone numbers and started calling. Our e-mails and our sharing was a courtship, which I didn't realize at first. I felt myself opening up. As time went on, as we explored each others' lives and likes, we were two people growing closer. Now the questions were coming at me in a flood.

Was this right? Did I have something to offer, and was it a fair exchange because I was still married even if permanently and forever separated? I braced myself for a fresh round of accusations that I was abandoning Jan. No rules, no roadmaps, no guidelines except the raging conversations inside my head.

In time I made my way to Denver and we met for breakfast and then, a few days later, for a drink. It was at the lobby bar in the hotel where I was staying and we had our drink around 9 p.m. It was a quiet night and the barkeep was bored, so he closed the bar about 10 p.m. but let us stay. We managed a second glass of wine before he locked up.

We talked for five hours that night. And after I left town we called and talked by phone, sometimes for five or six hours or even more. There was something there that was making me feel alive again, and I was both excited and guilty, maybe in equal measure. What drove me toward her? I believed it was because she was strong and sensible and intuitive.