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 May 2008 Post Book Essays An Unexpected Gift - Saturday, May 17, 2008 Caregiver Meltdown - Tuesday, May 13, 2008 An Unexpected Gift - Saturday, May 17, 2008 We've been enjoying the beach all week, even the two days of storms that kept us inside, awestruck as we watched the sheets of rain advance from the west and saw the heavy, leaden clouds make day into night. A storm over the ocean is a beautiful, fierce thing, with lightning forking down to the water and the waves whipped high. After the storms swept by, today dawned clear and calm. We've been in magnificent, beachfront accommodations once again through the generosity and love of our friends, Kim and Julian. We've known them over 30 years, before they even knew each other. Kim was newly arrived from Canada, barely 21, when she used to travel to my little apartment in Maryland with another dear friend, to do work in service to the Baha'i Faith. Julian was involved in the hotel business in Knoxville and I first met him in Berea, Kentucky on a Baha'i project when we both were much younger and hippier. Kim and Julian married and, despite distance and time, the friendship continued. They were at the Baha'i World Center in Haifa, Israel when I was so gravely sick in the hospital and ICU in Nashville last autumn, and they offered prayers for healing and assistance at the Baha'i shrines on my behalf. One of my favorite passages in the Baha'i scriptures begins, "Be generous in prosperity and thankful in adversity. Be worthy of the trust of thy neighbor and look upon him with a bright and friendly face." It goes on to mention other attributes and actions we should take to live an exemplary life of service, including fairness, uprightness, and humility. For me, Julian and Kim embody this powerful tablet. Their acts of kindness and their readiness to share their good fortune and the fruits of their hard work have touched many, many people, most often anonymously. It is an honor to be their friends. We enjoyed a wonderful visit with them at their home in Gulf Breeze, Florida, last year, when we came to the beach. This year, trying to get together was a bit more complicated, working around schedules. Kim is in California, on her way to British Columbia. Julian has been working extra hard in his real estate development business, with fingers in many pies. We hoped we could squeeze in a quick lunch with him sometime this weekend. We were enjoying perfect weather on the beach in our swimsuits, taking in the sun and reading, when we looked up to see Julian strolling toward us in a beautifully tailored shirt and slacks, barefoot and grinning. He hugged us tightly, unmindful of our sunscreen and sweat, and settled into one of our beach chairs. We were quickly deep into the kind of sharing we always experience with him and Kim. Throughout our visit on the beach, he kept in touch with colleagues with brief calls on his cell phone regarding a meeting that was ongoing and might need his presence or input. Finally, he said, "Let's get some lunch!" We took him back up to our condo and I pulled on a pair of shorts and my wig, while Steve put a shirt on over his swim trunks and got a pair of sneakers. "You look fine!" Julian intoned. "This is the beach!" As he walked around the condo, he asked after my health, my strength, and my energy levels. As we were walking toward the door, he said, "I've got the Widgeon over at the airport. We could take it out and go over to a restaurant and then come back. The only thing is, I'll have to beach it and, Debbi, you'll need to crawl through the nose of the plane and come up through a hatch and climb down from the front. Are you up for that?" Man! I really wanted to do this! When we were at Julian and Kim's home in British Columbia a few years ago, we had seen the Widgeon, an antique sea plane built in 1943 and completely rebuilt and retro-fitted. It's a gorgeous little plane. I told Julian that my only hesitation was that I'm more prone to motion sickness now. "I think I can do it, if you don't do any crazy s - - -!" I told him. He laughed and said, "You know how much
I love this plane, Debbi. The last thing I want is you throwing
up in it. If you feel at all queasy, you tell me and I'll get
the plane down fast." So, Steve, Julian, and I piled into his car and drove a couple of miles to Jack Edwards Airport, here in Gulf Shores. It's a busy little airport, combining an official air with a folksy, neighborhood feel. We climbed in through the back door of the plane, into the beautifully restored paneled and leather-upholstered interior. I felt like Ingrid Bergman leaving Casablanca or something, like I should be carrying a little square Samsonite train case filled with Revlon cosmetics and a pair of silk undies and be wearing a pillbox hat instead of flip flops, khaki shorts, and a blouse over a two piece bathing suit. Steve sat up front with Julian in front of the control panel and I seat belted myself into a seat by one of the little rectangular windows. Julian got clearance and taxied out onto the runway. He revved the plane's two engines and zoomed down what looked to me like a mighty short runway. Up went the nose of the aircraft and we were airborne. "We're a plane!" Julian announced. "Let's head along the beach." Steve was grinning like crazy and I found myself joining him. The plane was sweet and as smooth as could be and the view was amazing. We came around and passed just west of our condo building, so we could see it. Julian kept in radio contact with the airport, keeping an eye out for other planes, small helicopters and parasailors. Steve and I had headsets on, too, so we could hear all the communications and we three could also talk to each other. At regular intervals, Julian would ask, "Doing OK, Debbi?" Oh, yes! I was doing just fine. Not even a ripple of motion sickness, just a happy high. At one point Steve glanced back at me, shaking his head in wonder at this glorious plane ride, the blessing of our friend Julian, the gorgeous scenery scrolling out under us as the green waters of the Gulf of Mexico shimmered below us, and me sitting there, taking it all in. He laughed and said, "Well, Debbi! This is really giving the Grim Reaper the old finger, isn't it?" We three laughed hard. Three months ago, I was lying in a hospital bed at death's door, with nurses asking Steve whether to call a code if I had a cardiac arrest. Now, here I was flying along at 120 knots with tropical waters below me, in an antique aircraft, exhilarated and strong. Julian cut inland from the Gulf and circled around Wolf Bay, about 10 miles east of the airport, watching the boats and waiting for a chance to touch down in the bay on the plane's pontoons. Finally, we came down in the water. "Now, we're a boat," Julian said. We cruised along toward The Wharf, a new posh development of shops and condos along the Intercoastal Waterway at Wolf Bay, a couple of miles inland from the beach. I watched with amusement the puzzled and concerned looks of boaters as they contemplated this airplane in the water. "I'll bet you get a lot of stares, Julian," I teased him. "Actually, I get a lot of people calling out, 'Uh, are you OK?' " he answered.
We strolled along the sidewalks and shops, talking about everything. Julian stopped at an Aveda salon and spa. "A friend of mine owns this. Let's see what amenities they have available right now," he said. The receptionist apologetically said, "All we've got is three back-to-back hour-long massages." Julian looked at us with a twinkle in his eye. "Well?" "Aw, shucky-darn," I kidded him. "Just a massage? If you've got the time, of course we'll take it!" We spent the next few hours getting wonderful massages in a beautiful and serene atmosphere. Afterwards, we went to Johnny Rocket's for hamburgers and hotdogs. I also got a real soda fountain cherry Coke, like I hadn't had in at least 45 years. Conversation was wonderful and we all felt that warm affection and comfort of old friendship. We walked back to the plane, with the light beginning to wane. We'd heard in the meantime that it would be better next time not to beach the plane in the marshes. In addition to concern for the wetlands, apparently there's an alligator that lives nearby We made certain to make lots of noise as we sloshed our way back to the plane through the reeds. Getting the plane off the bank and turned around was tricky, with Julian pushing and Steve paddling out the back door. Julian crawled back in on top of the wing, over the roof of the plane and in through the front hatch. A couple of guys were standing on the dock nearby watching all of this and helped get the plane turned in the right direction, first by maneuvering the left wing and then by pushing and pivoting the nose of the plane. Julian took it all in stride with Zen-like patience and resolve. "This is typical." Taking off was exciting. What a rush as the plane speed-boated its way along the bay and then lifted out of the water! "We're a plane again!" Julian shouted over the noise of the engines. You can tell he never tires of this and gets delight every time he flies this little beauty. We landed back at the airport in an absolutely perfect landing, slick as butter, making me understand the expression "painting the runway." Julian grinned. We grinned. We were all beyond happy. He took us back to our condo, finishing our day together with a few more stories, and then drove off quickly to the airport, to use the last daylight to get back to Pensacola and get the Widgeon into some fresh water before absolute dark. As we hugged goodbye and tried to find words for thank you and "we love you," I told Julian, "This is one of the top 10 days of my life. Thank you for this. Thank you so much." Who could have imagined where life would take me? Whoever could have imagined a day like this one? *If you would like a copy of the portion of the Baha'i Writings that begins "Be generous in prosperity and thankful in adversity" just email Debbi at deborahhampton@slappedawake.com
Caregiver Meltdown - Tuesday, May 13, 2008 The toll on caregivers is just now becoming the subject of attention and research. The mortality and morbidity rate among caregivers is significantly higher than among the general population. In my own family, I have watched the decline in Steve's health, his general neglect of himself in favor of me, the high stress level that he sustains day to day, and his stubborn stance in putting me first. When I got out of the hospital in early March, my not eating was a source of constant worry to him. He also had a Post Traumatic Stress Disorder response to hospitals. When I saw my chest surgeon post-op about a week after I left the hospital, he found on an X-ray that I had fluid once again on the right side of my chest. He mentioned the possibility of further surgery or chest tubes or a Pleurex chest tube (a semi-permanent tube that the patient can drain every day or two). When I told Steve, he had a panicky reaction saying, "Not the hospital again!" The fluid in the chest resolved adequately on its own, but Steve's anxiety did not. He even found himself having driven automatically to the hospital one morning when he was trying to drive to work. He didn't realize what he had done until he turned into the hospital parking lot. As I began to eat, gain strength, and find my psychological equilibrium again, poor Steve disintegrated before my eyes. He became increasingly anxious, having trouble sleeping, being irritable and reactive to any stressors, and even having difficulty swallowing (despite a normal upper GI scope). I was still a bit testy myself, fatigued from the recent months of illness and the things left undone while I spent weeks in the hospital. We found ourselves doing something we rarely do: quarreling. One day, we drove from Chattanooga to Cleveland, Tennessee, about a 30 mile drive. For about 15 miles of that trip, we were having a shouting match in the car (and I don't even recall over what). In the middle of it, I remember feeling self-conscious. I thought to myself, I've seen people fighting in cars. You can tell when people are having an argument in the car. Everybody can tell that we're fighting in the car! All of this and the days of spats that had led up to it took us to a place of good discussion, tears and admissions of fear, fatigue, and battle-weariness. Each of us just needed our own suffering acknowledged. Neither of us wanted to be viewed as martyrs in this scenario. We just wanted our own truth and the reality of our individual experiences recognized and honored. That Steve couldn't know my suffering was pretty obvious. The patient de facto gets a break in that direction. It's hard to be sick. It's hard to hurt. It's hard to face death. It's hard to be dependent. It's hard to take treatments. Only another patient may come close to truly understanding the challenges of a serious illness. The legitimacy of my experience is pretty much a given. That doesn't make it easy for me, but I can expect sympathy and support. I don't have to plead my own case very hard. All around me are people who react to me by saying, "You have cancer! How awful!" As a caregiver, Steve's reality was a bit different. The caregiver is running behind the patient, panting and largely helpless. I think Steve felt like he had to fight to be understood by me and to have acknowledged the pain of watching the person you love suffer and be faced with hard decisions, sleepless nights, worry, and the hyper-vigilance of being the advocate at the bedside. When we talked finally, he wept at the many times he was so scared for me and for himself, at the prospect of losing me, of watching and wondering, Is this it? Add to all that the fact that his level of sheer exhaustion was beyond description. As he began to make the rounds to doctors, to go to rescheduled appointments he had missed because of me, he also had to endure being read the riot act by his doctors for being lax in taking prescribed medicines. It was a wake-up call for him. He has been much more compliant about his own medications, a little more committed to decent nutrition, definitely more willing to get sleep and take naps, and willing to try on the idea of regular exercise again. He's also taking a small dose of Ativan for anxiety when he needs it and is writing again, a cathartic way for him to process all that he has seen and done and been through. Best of all, he knew he needed a break. He
wrangled 10 days off so that we could come to the beach at our
favorite place, Gulf Shores, Alabama. Right now, he is under
a beach umbrella, slathered with SPF 30, deep into a Ken Follett
novel, with the surf lulling him. He is sleeping about 10 hours
a night, eating well, taking all his meds (which he carefully
counted into pill containers) and doing what he does best at
the beach: letting go.
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He
found a place at the edge of The Wharf development and beached
the plane among some reeds, at the back of huge Orvis fishing
equipment shop. Sure enough, a group of folks gathered rapidly
on the back porch, one of them hollering, "Uh, are you OK?"
Julian reassured them that he was just going to leave the sea
plane there for a few hours while we walked around The Wharf.
He crawled through the nose of the plane, up through the hatch,
and slid off the front of the plane into the marshy reeds. Then
it was my turn. I did fine, making my way through the passage,
hauling myself up through the hatch and then getting down. Steve
followed.