WEDNESDAY WORDS: PACKED FOR THE JOURNEY

“Heal the sick, cleanse the lepers, raise the dead, cast out demons. Freely you have received, freely give” (Matthew 10:8).

My husband was barricaded in his hospital room, threatening doctors and nurses with his IV pole.

 “You’re here!” he shouted when he saw me. “I knew you would come. I told you, Diana.” He turned to the nurse that was behind him, the only medical personnel he allowed into the room. “You won’t let them steal my brain, will you?”

“No,” I said. “No one will steal your brain.”

Diana smiled weakly. “Thanks for coming so quickly.”

I shrugged. “Thanks for calling. It’s not every day I have to come save my husband from space aliens. It’s a new adventure.”

In the years since Ron became disabled and I took on the role of the Well Spouse, I have often felt I had not really packed for the journey. The words “In sickness and in health” don’t really prepare you for the possibilities of what CAN happen.

I often wonder how the apostles of Jesus felt. The Book of Matthew relates the Great Commission which sent them out into the world. They were told not to burden themselves with luggage: no extra sandals or cloaks, no satchels, no money. They were to depend upon God for their provisions. And they were to freely give to others what had been given to them. They were not trained physicians, but they were to “heal the sick, cleanse the lepers, raise the dead, cast out demons “ (Matthew 10:8). Surely, they must have wondered how they—mere mortal men—would be able to accomplish these things!

It's a question I’ve asked myself many times in my journey as the Well Spouse. I have felt as unprepared as the Apostles as they set out on their missions, untrained in medicine of the mind and body. There were many times I sat alone in a hospital waiting room, just me and God waiting to hear if Ron would live or die.

But Ron, my husband of 42 years, is beloved of Jesus. He is worth far more than many sparrows (Matthew 10:31). Even when fear enveloped me, I knew the words of John 3:16 to be true: If Ron should die, he would be with our Father in Heaven.

The twelve Jesus sent out into the world on the first mission journeys were ordinary men. Four were fishermen. None were from the professional religious of the day. Yet they spread the Gospel throughout the known world and, even though it was illegal to become a Christian, many accepted Jesus as Savior. While the apostles may have felt inadequate to the task, God gave them the power and the courage they needed.

The journey of a Well Spouse also takes a lot of courage.

After the effects of the anesthesia from the previous day’s surgery wore off, Ron was peaceful, nodding off to sleep in his hospital bed. No more space aliens threatened his existence. His brain was safe for now. I sat next to his hospital bed, calmly knitting a prayer shawl for a friend when Dr. Inger quietly entered the room and checked Ron’s vitals.

“He’s doing okay,” the doctor said. “How about you?”

I gave a shrug. “Just another day. I’m used to it all.”

He nodded. “You’ve been married, what, 25 years?”

“Thirty.”

“Hmmm.” He took a chair from the corner and straddled it. “Do you mind if I ask you a personal question?”

I shook my head. “Go ahead.”

“How do you do it? How do you stay with him? Why don’t you just walk away?”

And so I told the good doctor that my vows had been honest ones. The road had been long and hard, but that did not mean giving up. Whenever I felt inadequate for the journey, whenever I felt as if I had packed the wrong things and just did not have what it would take to move one step further, God gave me what I needed.

“I think,” said Dr. Inger, “I need to study this some more. You’re a strong woman.”

I shook my head. “No,” I said. “I serve a strong God.”

The journey is far from over. This event happened years ago, and since then God has brought us to more surgeries and more hospitals and more people who need to hear the Gospel. My “go” bag for hospital emergencies now includes a knitting project, my Bible, a notebook, and several Bible tracts.

I pack light. God supplies the rest.

Sympathetic Joy

I’d see her around town occasionally, this woman who had once attended church with me. At the diner or the market, we’d bump into each other and exchange a few pleasant words. We’d ask about the kids—we had sons of a similar age—and talk about our church ministries. Somewhere in these brief exchanges over a decade of years, I’d learned that her husband suffered from bipolar disorder. I murmured sympathetic words; I knew what that was like. We’d part ways after a few moments, each of us going back to a challenging life. I seldom thought about her between our sporadic conversations.

I saw her again on Saturday, this woman of my acquaintance, sorting for buried treasure at the church rummage sale. We spoke, of course, making the same cursory comments we’d been making for years. Nice to see you. Beautiful day. How are your kids?

And then she said the unexpected, totally out of keeping with the little I knew about her: “I’m getting a divorce.”

I got it. Standing there with a covered casserole dish in my hand, balancing the cookie sheets I was holding for my daughter as she tried on a pair of jeans, I got it. Years of care-giving, arguments with a spouse that often lacked reason, raising a family on a shoe-string budget, doling out money to medical professionals who could offer no real hope all took their tolls.

I fixed my face into what I hoped was an appropriate expression of compassion and touched her hand. “I’m so sorry,” I said. “I know what it’s like.”

She knew my words were not empty. She nodded. “Of course you would.” We said a few more words, promised to pray for one another, and went back to our days.

As she turned down another aisle, I tried to find the words to describe what I was feeling. Empathy? Concern? Nothing seemed to fit. As my daughter returned with her 50 cent jeans and we continued on our rare day out, I shelved the thought for later on.

I took my thought out again the next day and looked it over. I turned to my thesaurus and the internet to try and pin down the words that would say it. I finally settled on a Buddhist philosophy: sympathetic joy.

Part of me was glad for this dear woman, glad that she would now be free of the demands of care-giving, relieved of senseless arguments and messy clean-ups and the burdens that come with being the Well Spouse. I pictured her in a small, sunny apartment somewhere, time healing the wounds caused by the illness of a spouse. I admired her courage, because I knew what it must have taken for her to reach this point. Dreams are not easily relinquished.

But along with the joy was the sympathy. Divorce meant the loss of the future she had planned as a bride, holiday dinners with an empty chair, grandchildren visiting on alternate weekends. I remembered the last thing she had said to me before we again parted ways: “It just got too hard.”

I know hard. I know exactly what hard tastes and smells and sounds and feels like. Being the Well Spouse is a solitary endeavor. We do what we do for the most part alone. Often our families do not understand or see it all. And sometimes the immediate family of the Ill Spouse would rather pretend the situation did not exist, casting the burden of an ill adult child onto the one unwittingly who said “I do.” It is easy to go blithely about when you do not hear the night demons screaming.

I prayed for her today, my fellow Well Spouse. I pray she has peace in her decision. I pray her adult children support her. I pray her church supports her.

And as I prayed, I was forced to again ask myself the hard question: Why do I stay? Why do I sacrifice so much for what seems to be a never-ending cycle, with one ailment after another plaguing my husband? Why do I live always waiting for the other shoe to drop? I am often exhausted by the burdens placed on my shoulders. There is no longer light at the end of an incredibly long tunnel.

Do I lack the courage to leave? I do not think so. I have seen myself become, these last fifteen years, a woman of daunting courage. Do I fear reprisal? My own children would understand. There is no one else whose opinion would matter to me. Do I think God would punish me? I believe that God, having created me, knows the limits of my body and my soul. I think He would be saddened, but I do not believe in a vengeful God.

So, then, why?

It’s a complex question. After 37 years, so much of me is tied up with my husband that it is sometimes hard to separate. My Well Spouse acquaintance commented that she no longer knew which things belonged originally to her and which to her husband.  It is more than just possessions that are shared. A lifetime is not easily dissected. Routines established are not quickly disbanded. Hope dies hard.

These are all reasons for staying. But the real reason is simple: I stay because I can. Despite my considerable vision problems, I am well and healthy.  I can still find joy in teaching and in writing. I can still laugh with girlfriends and have the kids over for supper and watch a movie with Ron. Our life has been bent, but not destroyed. If I have had to change my plans of a little retirement house at the beach where I can write all day, so be it. It is the price of the Well Spouse. I can still spin my dreams, however fragile they sometimes seem.

But I can recognize my own fragility as well. I can no longer work 60 hours a week and retain a bounce in my step and a twinkle in my eye. I cannot function solely on gallons of tea and the “someday I will write my novel” mantra. I’ve put that dream off for too long. I may need someday, let’s just face it, to come to the same decision as the woman at the rummage sale. The thought is always with me, a dark cloud over the head of a comic strip character. It may never rain, but the dark cloud still dangles above.

I recall the words of a former pastor, spoken at the very beginning of my journey as the Well Spouse. He took my hands in his and said, “Linda, I know that you will do everything in your power to help Ron. But if, at some point in time, years from now, you find that you can no longer do this, I will understand. I will not rebuke you.”

I can only pray that, should that overhead dark cloud descend, I will not rebuke myself.

Waiting for Gilligan: Part 2

8/10/14

There was an oft-repeated joke about the Professor on Gilligan’s Island and it went like this: If he could make a washing machine from bamboo, a Geiger counter from spare parts, and jet fuel from plants, why couldn’t he fix the boat and get the castaways off the island? In similar fashion, the Well Spouse who has been rudely thrust into the new role will ask the same question. Why can’t it be fixed? Almost every week, it looked as if the seven hapless victims of the Minnow’s wreck would finally be rescued. Alas and alack, by the time the credits rolled, all hope had been dashed on the same rocks that wrecked the Minnow and the castaways found themselves sitting around the same campfire, lamenting their fate.

It took us 26 surgeries to realize that, for Ron, more invasive procedures would not help the situation. In fact, his abdominal muscles were so weakened by so many repeated surgeries and his immune system so compromised by repeated infections, that he developed an enlarged heart, suffered mini attacks, and eventually needed to have a pace-maker/ defibrillator installed. I wonder what parts from the Island the Professor would have used for that?

One of the many roles of the Well Spouse is to continue to be optimistic, even when it appears all hope is lost. I was exhausted by surgery number 20, willing to throw in the towel and admit defeat. The mountain of medical bills had grown proportionally with each procedure. But Ron accused me, more than once, of “not wanting him to get well” (yeah, because I liked all the burdens I was carrying so much), so we ploughed ahead. After every surgeon we consulted—and the list was immensely long—vetoed anymore surgery, we began to look for alternative means of relief.

While Ron continued to hope for a miracle, I came to realize a few years into this insane journey that not only would rescue not come, a miracle cure was also a remote possibility.  Here is where the cheer-leader role of the Well Spouse gets a little murky. We want to believe in a cure, but our feet are mired in clay. We have also come to suspect—as our Ill Spouse has not—that we are too far into the journey to ever go back. Ron might want to turn back the clock fourteen years, but the kids have grown and gone on with their own lives. And, to a large extent, so have I.

Because there is no rescue for us. We need to learn to rescue ourselves. We remake ourselves each and every day. We find our own places of refuge—a few moments with a cup of tea on the back porch, a fifteen minute trip to the bookstore, an evening out to dinner with a friend. I made a very conscious decision at Year Two of this journey as the Well Spouse: I could not let this control my life anymore than it had to. I could not lose myself in what was only one aspect of me. I was sorry as could be that the illnesses needed to control my husband, but I refused to let it destroy me or my kids.

I’ve made good on my promise. Despite the hospital trips and the medical bills and all the things I need to do as the Well Spouse, I think of myself foremost as writer and teacher, not care giver.  I recognize that I have gained much these last fourteen years. Even if Ron were to be cured tomorrow, there would be no going back.

Gilligan’s Island lasted for three years. We watched each week as yet another potential rescue was thwarted , usually by Gilligan. The end of the third season left the Castaways on the uncharted island because, at the time, a fourth season had been planned. In 1978, the seven passengers of the S.S. Minnow appeared again in Rescue from Gilligan’s Island. After 15 years, they returned to their own lives, only to find that things on the mainland had changed. Eventually, a planned Christmas reunion aboard the Minnow II led to another shipwreck, with the cast once again back on the island. There was a sense of relief; this was what they knew. This had become home.

My life as a Well Spouse is not easy; sometimes it is darn hard. But it is what I know. The roles I need to fulfill, for Ron and for my students, are familiar to me. I no longer look for rescue. I no longer need to be rescued.

I figured out how to rescue myself.

Waiting for Gilligan-Part I

7/31/14 

We are at Hahnemann Hospital in Philadelphia for the second day of Ron’s ketamine infusions and I am pretty much done the school work I have brought for the 5 hour wait. Now I am reading, knitting, and writing. The knitting is a shawl begun last week at Bethany beach and is almost finished, the book is Marian Cohen’s Dirty Details, and the writing is this, my ever-present journal which sometimes transfers to my blog but may just as often stay trapped inside the paper covers. An orange “CRPS” awareness bracelet –a gift from Danielle’s mother this morning—is on my right wrist. I read some of Dani’s blog last night, a cheerful account of her own battle with complex regional pain syndrome. When I saw Dani yesterday, after her treatment, she was not so cheerful but was in intense pain. On the way up in the elevator this morning, Dani’s mother commented, “It is so hard to have an ill child.” I nodded in agreement, knowing that having an ill spouse is no picnic either. As we exited the elevator and steered our patients towards the infusion room, she asked me, “What do people do who have no caregivers?”

No idea.

I do know that I am, in this waiting room off of Broad Street, finding other Well Spouses—or well parents—and benefitting from the shared experiences. Despite whatever initial event –accident, surgery, stroke—brought them to this place, we all share a hard-won knowledge: no one is coming to rescue us.

Most of us felt, in the early days of our journey as well spouses or care-givers, that surely this could not now be our lives! It had to be a cruel joke, this sudden thrust of total responsibility for another’s care and feeding. Far different than suddenly being sent home with a new baby to cuddle, the people we came home from hospitals with were ill, sullen, demanding, and messy. There were no cute smiles or gurgles, no playing “this little piggy” with feet often too painful to wear shoes, no welcoming gifts in pink or blue paper.

“This cannot be it!” we all thought. “Surely we will get help. Surely the—fill in the blank here with universe, God, government, hospital, the good people at State Farm—will not allow this sorry condition to continue.” So, at the beginning, we fulfilled our given roles as caregivers as cheerfully as we could, convinced it would be temporary. We would, sooner or later, be rescued. Like those castaways on Gilligan’s Island, we lived in hope.

It was not so bad, at the beginning. We got some help from friends and neighbors, people at work or at church. They would stop by now and again, bringing a hot meal or offering to do a load of laundry. It is what I came to think of as the “novelty phase.” Just as new grandmas are eager to help out the exhausted new mother, people came.

But a chronic illness does not go away. The well-meaning, good people with casserole dishes go back to their own lives. “Call if you need help,” they say in parting. And we caregivers nod, knowing that we will never make the call. There will be no rescue.

Cohen, in Dirty Details, admits to having tantrums when she realized that rescue would never come. My method of dealing with it all was different: I accepted every burden, every messy task, every indignity as my due. Retribution, perhaps, for some forgotten sin. I suffered for years in a strained silence, waiting for rescue, praying for rescue, but never asking.

I would pass fellow teachers in the hallway and wonder why they did not see my Well Spouse status and offer me—I don’t know—an out? An arm? A prayer? Something. Anything.

But Well Spouses have what Cohen calls an “invisible disability.” When we are with our Ill Spouses, helping them negotiate walkers down hallways, someone will open a door or offer to carry a bag. But without our Ill Spouses by our sides, no one can see our disability. We are still disabled, still working too many hours to support a family that used to have two incomes, still going home to cook dinner and change the catheter bag, relieve the day nurse, run the vacuum cleaner, make a meal our Ill Spouses can digest, run endless loads of smelly laundry, then collapse into a boneless heap after our Ill Spouses are settled for the night, knowing that a solid night’s uninterrupted sleep is a myth.

If only, as Cohen states, the would-be rescuers would not wait to be called but would offer substantive help, such as, “I’m coming over on Thursday night to watch the game with Ron, so take the evening off”, or “I’m headed to the market on Monday. Give me your list”, or “I made two roasts last night and I am dropping one off.”

Some of these things have happened from time to time and I have been grateful. I do not mean to complain. But my Ill Spouse’s problem is not an appendectomy that will be healed. Ron is, like so many, chronically ill and has been for fourteen years. We deal with the after-effects of the accident—TBI, CRPS, COPD, atonic bladder, depression—on a daily basis. We have come to accept them as members of the family, here to stay.

Here is where I, along with Cohen, make the impossible wish; all of you who are friends of the long-suffering Well Spouse or Well Parent need to get together and work it out. Not a once a year benefit to pay for out-of-pocket medical expenses—although it would be nice if even one of Ron’s $225 ketamine treatments could be covered—but on a permanent basis. Offer, say, to do the marketing once a month or clean my house every second Tuesday or visit Ron during the World Series. Take my Ill Spouse to the barber every six weeks or maybe buy us dinner on a day with an “e” in its name. Anything, as long as it is consistent and done willingly—not out of guilt—without waiting for the Well Spouse to pick up the phone.

Because a woman or man who works sixty hours a week at three jobs, who spends  evenings doing housework and laundry and caring for the Ill Spouse, who tries to squeeze in some church ministry, who can only do any writing before the sun rises, is not going to pick up the phone and call you. There is just no time.

So, like those castaways on Gilligan’s Island, we know there will be no rescue. But we continue to look for that search plane in the sky, the one that will finally and forever take us off the Island of the Well Spouse.