Category Archives: Death
I do not understand the mystery of grace — only that it meets us where we are and does not leave us where it found us.
My seven-year-old grandson sleeps just down the hall from me, and he wakes up a lot of mornings and he says, “You know, this could be the best day ever.” And other times, in the middle of the night, he calls out in a tremulous voice, “Nana, will you ever get sick and die?”
I think this pretty much says it for me and for most of the people I know, that we’re a mixed grill of happy anticipation and dread. So I sat down a few days before my 61st birthday,and I decided to compile a list of everything I know for sure. There’s so little truth in the popular culture, and it’s good to be sure of a few things.
For instance, I am no longer 47, although this is the age I feel, and the age I like to think of myself as being. My friend Paul used to say in his late 70s that he felt like a young man with something really wrong with him.
Our true person is outside of time and space, but looking at the paperwork, I can, in fact, see that I was born in 1954. My inside self is outside of time and space. It doesn’t have an age. I’m every age I’ve ever been, and so are you, although I can’t help mentioning as an aside that it might have been helpful if I hadn’t followed the skin care rules of the ’60s, which involved getting as much sun as possible while slathered in baby oil and basking in the glow of a tinfoil reflector shield.
It was so liberating, though, to face the truth that I was no longer in the last throes of middle age, that I decided to write down every single true thing I know. People feel really doomed and overwhelmed these days, and they keep asking me what’s true. So I hope that my list of things I’m almost positive about might offer some basic operating instructions to anyone who is feeling really overwhelmed or beleaguered.
Number one: the first and truest thing is that all truth is a paradox. Life is both a precious, unfathomably beautiful gift, and it’s impossible here, on the incarnational side of things. It’s been a very bad match for those of us who were born extremely sensitive.It’s so hard and weird that we sometimes wonder if we’re being punked. It’s filled simultaneously with heartbreaking sweetness and beauty, desperate poverty, floods and babies and acne and Mozart, all swirled together. I don’t think it’s an ideal system.
Number two: almost everything will work again if you unplug it for a few minutes — including you.
Three: there is almost nothing outside of you that will help in any kind of lasting way,unless you’re waiting for an organ. You can’t buy, achieve or date serenity and peace of mind. This is the most horrible truth, and I so resent it. But it’s an inside job, and we can’t arrange peace or lasting improvement for the people we love most in the world.They have to find their own ways, their own answers. You can’t run alongside your grown children with sunscreen and ChapStick on their hero’s journey. You have to release them.It’s disrespectful not to. And if it’s someone else’s problem, you probably don’t have the answer, anyway.
Our help is usually not very helpful. Our help is often toxic. And help is the sunny side of control. Stop helping so much. Don’t get your help and goodness all over everybody.
This brings us to number four: everyone is screwed up, broken, clingy and scared, even the people who seem to have it most together. They are much more like you than you would believe, so try not to compare your insides to other people’s outsides. It will only make you worse than you already are.
Also, you can’t save, fix or rescue any of them or get anyone sober. What helped me get clean and sober 30 years ago was the catastrophe of my behavior and thinking. So I asked some sober friends for help, and I turned to a higher power. One acronym for God is the “gift of desperation,” G-O-D, or as a sober friend put it, by the end I was deteriorating faster than I could lower my standards.
So God might mean, in this case, “me running out of any more good ideas.”
While fixing and saving and trying to rescue is futile, radical self-care is quantum, and it radiates out from you into the atmosphere like a little fresh air. It’s a huge gift to the world. When people respond by saying, “Well, isn’t she full of herself,” just smile obliquely like Mona Lisa and make both of you a nice cup of tea. Being full of affection for one’s goofy, self-centered, cranky, annoying self is home. It’s where world peace begins.
Number five: chocolate with 75 percent cacao is not actually a food.
Its best use is as a bait in snake traps or to balance the legs of wobbly chairs. It was never meant to be considered an edible.
Number six —
writing. Every writer you know writes really terrible first drafts, but they keep their butt in the chair. That’s the secret of life. That’s probably the main difference between you and them. They just do it. They do it by prearrangement with themselves. They do it as a debt of honor. They tell stories that come through them one day at a time, little by little.When my older brother was in fourth grade, he had a term paper on birds due the next day, and he hadn’t started. So my dad sat down with him with an Audubon book, paper, pencils and brads — for those of you who have gotten a little less young and remember brads — and he said to my brother, “Just take it bird by bird, buddy. Just read about pelicans and then write about pelicans in your own voice. And then find out about chickadees, and tell us about them in your own voice. And then geese.”
So the two most important things about writing are: bird by bird and really god-awful first drafts. If you don’t know where to start, remember that every single thing that happened to you is yours, and you get to tell it. If people wanted you to write more warmly about them, they should’ve behaved better.
You’re going to feel like hell if you wake up someday and you never wrote the stuff that is tugging on the sleeves of your heart: your stories, memories, visions and songs — your truth, your version of things — in your own voice. That’s really all you have to offer us,and that’s also why you were born.
Seven: publication and temporary creative successes are something you have to recover from. They kill as many people as not. They will hurt, damage and change you in ways you cannot imagine. The most degraded and evil people I’ve ever known are male writers who’ve had huge best sellers. And yet, returning to number one, that all truth is paradox, it’s also a miracle to get your work published, to get your stories read and heard. Just try to bust yourself gently of the fantasy that publication will heal you, that it will fill the Swiss-cheesy holes inside of you. It can’t. It won’t. But writing can. So can singing in a choir or a bluegrass band. So can painting community murals or birding or fostering old dogs that no one else will.
Number eight: families. Families are hard, hard, hard, no matter how cherished and astonishing they may also be. Again, see number one.
At family gatherings where you suddenly feel homicidal or suicidal –remember that in all cases, it’s a miracle that any of us, specifically, were conceived and born. Earth is forgiveness school. It begins with forgiving yourself, and then you might as well start at the dinner table. That way, you can do this work in comfortable pants.
When William Blake said that we are here to learn to endure the beams of love, he knew that your family would be an intimate part of this, even as you want to run screaming for your cute little life. But I promise you are up to it. You can do it, Cinderella, you can do it,and you will be amazed.
Nine: food. Try to do a little better. I think you know what I mean.
Number 10 –grace. Grace is spiritual WD-40, or water wings. The mystery of grace is that God loves Henry Kissinger and Vladimir Putin and me exactly as much as He or She loves your new grandchild. Go figure.
The movement of grace is what changes us, heals us and heals our world. To summon grace, say, “Help,” and then buckle up. Grace finds you exactly where you are, but it doesn’t leave you where it found you. And grace won’t look like Casper the Friendly Ghost, regrettably. But the phone will ring or the mail will come and then against all odds, you’ll get your sense of humor about yourself back. Laughter really is carbonated holiness. It helps us breathe again and again and gives us back to ourselves, and this gives us faith in life and each other. And remember — grace always bats last.
Eleven: God just means goodness. It’s really not all that scary. It means the divine or a loving, animating intelligence, or, as we learned from the great “Deteriorata,” “the cosmic muffin.” A good name for God is: “Not me.” Emerson said that the happiest person on Earth is the one who learns from nature the lessons of worship. So go outside a lot and look up. My pastor said you can trap bees on the bottom of mason jars without lidsbecause they don’t look up, so they just walk around bitterly bumping into the glass walls. Go outside. Look up. Secret of life.
And finally: death. Number 12. Wow and yikes. It’s so hard to bear when the few people you cannot live without die. You’ll never get over these losses, and no matter what the culture says, you’re not supposed to. We Christians like to think of death as a major change of address, but in any case, the person will live again fully in your heart if you don’t seal it off. Like Leonard Cohen said, “There are cracks in everything, and that’s how the light gets in.” And that’s how we feel our people again fully alive.
Also, the people will make you laugh out loud at the most inconvenient times, and that’s the great good news. But their absence will also be a lifelong nightmare of homesickness for you. Grief and friends, time and tears will heal you to some extent. Tears will bathe and baptize and hydrate and moisturize you and the ground on which you walk.
Do you know the first thing that God says to Moses? He says, “Take off your shoes.”Because this is holy ground, all evidence to the contrary. It’s hard to believe, but it’s the truest thing I know. When you’re a little bit older, like my tiny personal self, you realize that death is as sacred as birth. And don’t worry — get on with your life. Almost every single death is easy and gentle with the very best people surrounding you for as long as you need. You won’t be alone. They’ll help you cross over to whatever awaits us. As Ram Dass said, “When all is said and done, we’re really just all walking each other home.”
I think that’s it, but if I think of anything else, I’ll let you know.
Sarah Smarsh on That Moment When, a new show by PBS News Hour on Facebook Watch says a lot of what I have experienced about the differences and the similarities between people. Many people simply don’t question the strongest influences in their childhood, particularly those that gave them some sense of security in a frequently confusing and frightening world. Their minds don’t work that way., They learn differently, not by extrapolating or questioning their experience, but by building block by block on what they experienced and were taught. For many, the two influences that gave them some sense of security were parents and church. And their personalities and mental processes did not incline them to question the only security they had. Why would they? But some of us are born asking questions and challenging authority. Instead of security, we experience the status quo as a jail. We were what were called “strong willed children” by traditionalists and as ” children who color outside the lines” by creative people. As such, the more an authority figure, whether parent or teacher or preacher tried to control us, the stronger we pushed back. Not because we had our own world view, but because we wanted the freedom to explore, the joy of finding new ideas. BOTH are necessary. Creative personalities often throw the “baby out with the bathwater” and seldom consider the practical limitations of ideas. The need is for dialogue and balance, not assuming stupidity or evil on the part of those who approach life differently. I was once told that a high IQ had a downside because no matter if you are a genius, NO ONE is always right. And the Bible is full of chosen people who were used by God, but had blind spots and weaknesses that got them totally off track, such as David and even Peter in his conflicts with Paul. The call now is to not push each other into ridiculous and dangerous extremes, but to listen through the jargon to the important values of each side of issues . How many innocent people do we justify killing as collateral damage when we become involved in cultural conflicts on the other side of our shrinking planet? The question isn’t really do we kill or not, but whom and why. How many killers do we kill in hope of it being a deterrent to other killers and who decides when someone is beyond redemption? How many killers get out of jail and kill again? How do we choose between an unborn baby and its eleven year old mother’s mental and physical well being after she was raped or the victim of incest? How many unborn babies do we kill because we want to drink and sleep around? We have to recognize that one law or political slogan doesn’t fit all situations and together find the flexibility to attempt to decide different choices in the light of human spiritual values, not just blanket laws or knee jerk reactions to situations that have not affected our own life. And to do that, we ALL have to admit that we see through the glass (and in the mirror) darkly. Pride blinds us. We need each other.
I had a fun blessing this morning.
The other day when exhausted, I attempted to close my husband Julian’s RX account with the Medicare medicine insurance. I didn’t have the correct number in reach and the recorded voice kept saying “I can’t understand your answer and kept asking for the same thing over and over, even after I kept answering, “He died.” Finally, I shouted, “Go to hell!” and hung up. Needless to say, the recording was unimpressed. Today, I started over, with the attitude that I was too tired to do anything else, so sitting down arguing with recordings was as good a way as any to spend this day. I at least had one of the magical thirteen digit numbers, so I finally got to speak to a person. After explaining that I wanted to close my husband’s account because he had died and thanking the woman for her condolences, she asked, “What is his zip code?” Of course, I couldn’t resist that. When I replied, “I don’t think they have zip codes in heaven,” there was a profound silence, followed by a smothered giggle. I rescued her by apologizing and admitting that I just could not resist that.
After that we quickly developed a rapport, so she apologized profusely each of the six times she put me on hold and I cheerfully told her it was fine, their music was lovely and I didn’t want to do anything today anyway. \And actually the music was lovely and soothing and during one protracted wait, I found myself kind of floating around in my head thinking about the oneness of all things and that the Spirit is in each of us and we are all in the spirit, and everything is one whether in this life or elsewhere and I actually felt close to Julian and comforted. Who knew? Attitude is everything.
Anyway, when she came back to tell me she needed to transfer me to someone with Medicare, I was very mellow and thought that was great, because I needed to call them anyway.
The transfer presented challenges however and at one point she and I both thought we had been disconnected. But what once was lost, now was found and we parted friends forever and I got a new person and new music. We played the “on hold” game for a while and then she announced cheerfully that she was going to transfer me to a live person. That made me wonder about her for a moment, but in the spirit of cooperation, I assured her that I definitely had a preference for alive people.
November 6, 2018 A sad morning, but much gratitude that Julian, my husband of almost sixty years, did not have physical pain. I was able to hold his hand and tell him I love him as we listened to the lovely song he wrote at The Meadows. Then he quietly quit breathing as his heart stopped. Tonight children, grandchildren, and a great-grandson gathered to chose photos of joyful times with him to celebrate his life and love. There was much shared laughter at wonderful and funny memories punctuated by moments of tearful awareness of our loss. As hard as this year has been, my worst fears never happened and there were moments of beauty, joy, and love sprinkled generously through it all. I am very blessed.
It’s a monster size time of change and challenge with my husband Julian now in the nursing home on Hospice. Our almost sixty years together have been a normal human mix of happy and sad, easy and hard, comfortable and scary, tender and frustrating, but we have persevered and now it’s like we are both part of one imperfect, but whole person. He panics now, if I leave him alone. But bless our five children and grown granddaughter Carmen, who are so thoughtful and willing to give up their free time so I can have some down time. This weekend, I finally admitted that I need the down time, not just to go home to sort and clean there,. Writing and connecting with friends to sort out my feelings is much needed therapy. I think most extroverts need to express what is going on within to get in touch with it themselves.
Today, I realized that I am reacting emotionally to trying to make The Meadows a home and then coming back to our apartment where much of it is now in the unfinished process of drastic change. The garden outside the window at the Meadows is lovely and is kept up beautifully by a team of people. And yesterday, our family, with Julian making decisions, turned the room into a tiny apartment with everything but a stove. (I have my choice of three microwaves in all directions from our room anyway.) It has a wonderful homelike feeling.
Though it isn’t permanent and isn’t really ours, going there has been the right choice, because most days I am busy helping Julian and couldn’t manage to clean and cook like I would need to at home. Also, as he becomes weaker, I would not be able to take as good care of him alone. In an imperfect world, it is an amazing luxury, one that most people do not have. I am humbled by our good fortune and sad that all cannot share it. Though with our life in such a period of change, I do sometimes feel “homeless.” But at this moment, I am looking out at the pretty flagstones Steve put around our bird feeders, at the now healthy holly tree that I feared was dying, and a familiar bright cardinal in the lush greenery outside our windows. My small comfortable bedroom/office with walls covered with photos of all our family at different ages and stages feels so familiar, safe. and comforting. But even though family offered to take turns to let me stay home several days, after two days, I miss Julian so much, even in his grouchy or fearful moments, that I feel lost. And I realize that home is where he is.
Handling all the maddening business challenges of our situation sometimes gives me an almost overwhelming desire to curl up in a fetal position in my very own bed and suck my thumb and not answer the phone, the door, or open any mail ever again! But like now, a tiny wren sitting outside the window looking at me makes me smile and I rally.
The helpless feeling,when Julian wakes in the night and talks about how lost, confused and frightened he feels, leaves me speechless from feeling unable to console him. But sitting close and holding him until he calms some, I blow lightly in the wispy hair left on the top of his head. It’s something that makes him smile, bringing memories and a tiny moment of joy that heals us for a while.
And after a sleepless night alone in our apartment, when the first colors of the sunrise finally warm the world and my heart, I think of the words of the song, “And then comes the morning, yesterday’s sorrows behind.” And I remember that both the dark and the light come and go. And thanks to grace all around me, I can let go and start again.
“You can’t fill a cup that is already full. That means you can’t approach a new situation, relationship, or job with what you think you know will happen. When you do that, you’re not leaving room for the unexpected, the delightful, and even the miraculous. Try starting from a place of ‘Maybe I don’t know.’ It allows you to be open to something or someone being different from what you experienced in the past. When you approach life in this open way, you also allow the universe to conspire on your behalf. So be empty of expectations. The universe will always dream bigger than you will. Abundance comes when you realize that you can receive what you need-every day.” by Eden-Clark and John Germain Leto
This quote so speaks to my condition right now. One of the hardest things for me is to allow those I care about to hurt. I want to help them find joy even in times of suffering, both for themselves and partly for myself. But suffering is part of the fabric of life and brings opportunities for grace and each of us has our own way and timing for experiencing it and learning from it. And part of loving another person is allowing them to be themselves, even if we are totally convinced we know “better” ways to be. Not being able to help my husband accept the losses that come with his illness or to help him trust that death is only a doorway, not the end, is very painful. And feelings of inadequacy and failure easily become less painful when disguised as frustration and impatience. The quote at the beginning of this showed up as a memory on my face book page today reminding me that my way may not be the best way for someone else and to trust God who loves my husband more than I ever could.
I do relate this experience to Mary’s vigil at the foot of her son’s cross. She had tried to convince him to come home when she realized he was putting himself in danger. She must have struggled with anger when he wouldn’t listen, also with guilt that she had somehow failed him, and with unimaginable heartbreak as she watched him suffer.
In the quote at the beginning of this, I translate “Universe” as God. And however anyone understands salvation, I truly believe that Jesus showed us that this life is not all there is and that suffering has the potential to be redeeming.
And the most counter-intuitive truth he showed us about life was when he prayed from the cross, “Father, forgive them. They know not what they do.” He showed us that forgiveness is the ultimate requirement for love, so that we too can experience forgiveness. Because forgiving others and accepting and experiencing forgiveness are inseparable.
Forgiving others frees us to forgive ourselves, particularly when we have not been able to consciously admit we need forgiveness. We all have the self-righteous belief that our way is the totally right way. And that blinds us to the harm we do. Forgiving others for their blindness both frees and heals us.
Forgiving others is at the core of the command Jesus gave us, “Love one another as I have loved you,” because forgiveness is the very essence of Good Friday.
My prayer for all of us this Holy Week is that we will find the grace to admit the limits of both our own understanding and of everyone’s human blindness, freeing us to both forgive and accept forgiveness. So then, on Easter, we can celebrate the love of God expressed in Jesus and truly rejoice and be glad in it.
One of my favorite stories is about psychologists doing a study of pessimists and optimists. They put a young pessimist in a room with every imaginable toy. At first he happily tried out each toy, but soon he sat down crying. When they asked him, didn’t he like the toys, he sniffled “Yes.” But when asked why he was crying, he said, “They are very nice, but I know they will break. Toys usually do. I don’t want to enjoy them and then lose them.”
In the meantime the young optimist was in a room with just horse manure. To their surprise he was happily digging through the pile of manure. When asked why he was so happy, he answered enthusiastically, “With this much manure, there’s got to be a pony in here somewhere!”
I started 2017 with Lumbar Fusion Surgery followed by months of physical therapy, but still ending up in pain when bending and getting in and out of bed. All the bottom cabinets in our apartment are now pretty much unreachable for me. Since I’m short, the upper cabinets have always been out of reach, but now anything unbreakable is accessible with my new reacher. Though I’ve gotten fairly good at tilting things out with the reacher and catching them with my left hand, sometimes I start a chain reaction and all sorts of containers rain down on my head, the counter and the floor. As long as none break open, I just laugh and start over. However, the grits opening mid-air, provoked a different reaction. I’ll just leave it at that.
Shortly after surgery I awoke in the night unable to move my arms. I panicked thinking my arms were paralyzed, until I realized that the Velcro on my wrist braces for my carpal tunnel problem had locked onto the Velcro on my back brace. For a few minutes I thought I was going to have to wake Julian to help me, but I finally managed to get free. I think I did wake him with my laughter. Major blessings in the first several weeks of limited mobility and pain were Julian’s and all our family’s support and help and friends also brightening those days with tasty gifts of food. I felt very loved. And gained five pounds.
Some good news in April was that our Pulmonologist announced that my husband Julian’s Idiopathic Pulmonary Fibrosis had not progressed. But then, he informed us that the scans had shown a tumor in his right lung. The biopsy showed cancer cells, so surgery was scheduled. It was a very scary time. Thankfully, it only took minimally invasive surgery to get all the cancer. So far, in each three month checkup, he is still cancer free. Another blessing in this was his surgeon, who is one of the most intelligent, funny, honest, humble, caring people we have ever met. I told her once that we admired her greatly, particularly because she didn’t think she was God. She laughed and said that she had figured that out pretty early in her life.
However, at the age of eighty-one Julian was now terribly frustrated by how slow his recovery was. Just fourteen years ago he had bounced back pretty quickly from heart surgery. And just as he was finally getting back to work on several architectural jobs, his heart went out of rhythm. So, back to the hospital we went for a Cardiac Ablation. Unfortunately, though the ablation seemed successful, for unknown reasons he began to hemorrhage profusely. The two nurses with him began to take emergency measures to staunch the bleeding, but he was losing consciousness. So, while one lowered the head of the bed to get oxygen to his brain, the other nurse (a tall good looking blonde named Amy) climbed up on the bed to be able to put enough pressure on the incision in his groin to stop the bleeding until the emergency equipment got there. About that time Julian regained consciousness and asked in surprise, “Amy, are you getting in bed with me?” (Hope springs eternal…)
The pressure equipment slowed the bleeding, but a vascular surgeon was called in to do exploratory surgery to see if an artery had been perforated. None could be found even with extensive exploration. So, though the original ablation incision was small, the exploratory one was quite long. Julian now continued to bleed from both surgical sites in the groin area, with the bleeding only very slowly becoming less profuse. A one day stay in the hospital turned into eleven days and he was still leaking fluid with some blood from both sites when they sent us home. I, an eighty year old klutz, who had just had two cataract surgeries in the ten days before this, and had numb fingers and no grip because of carpal tunnel syndrome, would now be bandaging and cutting off bandages on the two adjoining surgical sites about three times a day. Purely through the grace of God, I managed not to do him any further damage and after about another ten days the two sites no longer needed bandages. Julian never admitted to trepidation, but his sigh of relief was quite audible when we finally got to stop playing doctor.
This was now late October. Once again age took its toll and recovery was even slower. Julian lost all appetite, began sleeping excessively, and being untypically sad and even somewhat surly. So, the doctor gave him “cheer up” meds. Lo and behold, he became amazingly energetic, funny and now smiling with a wonderful sparkle in his eyes. We were both delighted. (I considered asking for a prescription for myself.) Unfortunately, he then didn’t shut his eyes for five days and five nights, so the doctor had to switch the meds. With physical therapy he slowly regained some strength once more and began to work again on his much overdue architecture projects.
Suddenly, his legs and feet began to swell and turn bright red. The diagnosis was cellulitis, so now he was again on antibiotics, steroids and having to try to work on his computer with his feet propped up above his heart. I took a photo of this rather hazardous acrobatic endeavor, but wasn’t quite mean enough to post it on face book or my blog. Well….not yet.
The next day he had a meeting to attend on one of his projects. By now, he couldn’t even get his well worn moccasin house shoes on, so I drove him to Walmart to buy some larger backless black house shoes. Since it was raining, he wore socks with plastic grocery bags over them. He put the new shoes on at the checkout counter, but since one foot was swollen less than the other, to keep that shoe on when he walked, he had to sort of shuffle his way out to the car. Well, at least they matched the color of his suit.
Then just as he was beginning to get back to a somewhat diminished “normal,” he developed a horrendous cough and began to have to fight to breathe. We feared the fibrosis had flared up, but it appeared to be an inflammation, possibly because of drastic weather changes and a cold. Back on steroids and antibiotics again. Exhausted by fighting to breathe, he ended up bedridden for several weeks and once more with swollen feet. An unexpected blessing was a recently bought new sofa that was perfect for sleeping with elevated feet on wedges our Steve ordered. He slept there day and night with the remote to control the TV and a view of a flock of cardinals that hang out at the birdfeeders outside the French doors.
Slowly he began once more getting some strength back. But, suddenly while working quietly in his office in our apartment, he was almost paralyzed by extreme pain in his chest that radiated up into his jaw. I got him to the hospital in four minutes. It would have taken the ambulance that long to get to us. Eventually, as they were running tests, the pain subsided and the tests looked okay, but they kept him over night for an echo cardiogram. While waiting for a room, we did our usual survival by humor routine and one of the nurses asked, “You do realize this is an emergency?” We just laughed and said, “We’ve had so many medical emergencies in the last couple of years, we’ve decided that humor is the best survival medicine.”
His heart didn’t show any damage, so he got to go home the next day, but barely in time to change clothes to attend the Developmental Services Banquet. This is our community organization for those with mental handicaps. Julian designed several of their group homes and was a very active member on their board for seven years. For about twenty years he also gave them the monthly stipend he got for being on the City Zoning Appeals Board. Last year we were invited, but he ended up in the hospital so we didn’t make it. This year they gave me a heads up that he was supposed to be given the award he’d missed last year. I think we got there two minutes before it started. So in his suit and tie, wearing his very dilapidated, but fortuitously stretched from wear, moccasin house shoes, he received an award and a lot of affirmation. Many of the award winners were clients with disabilities who work as helpers in the group homes. I was touched by the wholehearted applause and cheering of the other clients. The award presentations were interspersed with Christmas music like, O Holy Night, and the elderly client sitting behind me knew the words to all of them perfectly, but not the tunes. But the sheer joy in her voice brought tears to my eyes as I realized that this too was an answer to my Advent Prayer, “Come, Lord Jesus.” I think Jesus is more visible in the handicapped than in the rest of us.
Our primary care doctor now scheduled Julian for an endoscopy to check for other possible causes for the pain that took us to the ER.
Meanwhile, our son Steve came from Atlanta to spend the weekend creating a wonderland with our collection of Dickens Village buildings, people in many different vignettes, animals, and trees and landmarks of London.
Julian directed this from the couch and it ended up with five levels of hills and valleys with bridges over chasms, a cave, and even a crime scene complete with crime scene tape that our son Tommy made and sneaked into the village a couple of years ago! Well after all, they had a lot of crime in Dickens day too. All the houses, churches, pubs and businesses have lights inside and the sheets of cotton snow cover the few empty patches outside. I think some zoning issues entered into the city planning also.
It really is both beautiful and interesting. And since it has grown to cover the whole end of the living room and now even continues around one corner, there’s no room inside for a Christmas tree. But outside one of the French doors, we have a small lighted one that looms large over the village. If you have to be sick, this is a lot better view than in the hospital. (Well, other than Amy the blonde nurse anyway.)
The next weekend our son Tommy and delightful Whitney with the awesomely beautiful voice brought our four granddaughters and they helped decorate the rest of the house. Then it was fun watching our talented artist granddaughters draw and getting to enjoy Whitney singing with Tommy accompanying her on the guitar. Another truly lovely Christmas experience.
Finally, Julian got to have his endoscopy which showed a pill had become lodged in his esophagus and caused an ulcer. A biopsy done to check for infection was negative. But now the challenge was to avoid the many delicious foods that irritate an ulcer.
A week before Christmas, nineteen of our family arrived for our annual Christmas gathering in a cabin at near-by Montgomery Bell State Park. Our grown children and grandchildren did most of the preparations and helped us organize and pack up our now downsized contributions. The cabin with its large stone fireplace and its wooded setting on a lake is a perfect place for a holiday gathering. The first day, Julian mostly rested, wrapped warmly in a comfortable recliner with everyone taking turns spending time with him and getting him things.
By the second day he felt well enough to be beaten at poker by both the grandchildren and great-grandchildren! It was a very happy day with even our grandson who teaches in Bolivia making it back in time. And we got to face-time our son Michael and his spouse Patrick in Cambodia, where they teach at an orphanage for children born HIV positive. I love that I have lived long enough to experience talking with and seeing our loved ones all the way across the world. In spite of all our challenges, it was a wonderful family Christmas celebration.
Christmas week, Julian’s blood pressure started vacillating wildly and he began to have severe chest pain from the ulcer in spite of taking nineteen different medicines each day! Unfortunately, all our doctors were out for a week of Christmas vacation. Adding to his misery, one of his new medicines made Julian very dizzy. He was walking to the bedroom and started to fall as he was almost to the king size bed. I was behind him and began to try to help him get to the bed. He started shouting, “Where’s the bed? Where’s the bed?” Because a week before he had had a sudden drastic loss of hearing, I thought he’d now gone blind! I managed to get him safely onto the bed and asked him if he could see it now and he snapped back, “Of course!” When I asked him why he couldn’t see it a moment before, he replied, “Because I had my eyes closed.” I had a sudden strong desire to strangle him, but fortunately my hands aren’t strong enough.
Now the sparkling lights of the village and the twinkling little tree outside and the bright red cardinals flaming around the feeders were still cheerfully visible over the rather large air purifier, the humidifier, and the walker. They could even be seen between the CPAP and Blood Pressure machine and various breathing aids on the rolling cart that we pulled next to the couch with its pyramid of wedges for elevating feet above the heart. The Christmas angels and burgundy candles around the tray with Julian’s nineteen medicines looked festive on the dining room table. I tried to convince Julian that a wreath of holly would keep his head warmer and add to the Christmassy atmosphere, but he wasn’t in the mood. I was tempted to dig out the left over “happy” pills and slip just a half of one in his milk, but it being the Holy Days, for once I resisted evil.
Julian now needed to not lie flat because of the ulcer and he still needed to keep his feet above the level of his heart. I suggested getting a hammock since our middles are our heaviest body area, both head and feet would then be high. But it’s already getting difficult to walk around the apartment, so Julian solved the problem by varying which end he raises with the wedges over the day and night. The other challenge is a diet healthy for his heart, esophagus, and feet. Low salt, low fat, low fiber, no spices, no tomato products, no dairy for two hours before and after a pill he takes twice a day, no caffeine, carbonation, citrus or anything acidic or alcoholic. And the steroids are making his sugar count so high that the frequent tears in his very thin skin won’t heal. So, low sugar also. I spent about three hours grocery shopping during the busiest shopping season of the year reading the contents of everything. But it’s a saving grace to have our son Chris living nearby and willing to come stay while I have to be gone. He and Julian share many interests and it seems to not only be a bright spot in those days for Julian, but to be bringing them much closer to one another. And the many kindnesses of our family and friends have touched Julian’s heart, helping him see how loved he is.
Our newest great-grandson, Raphael, who had a difficult birth on November 15th, didn’t breathe until they resuscitated him. He stayed in the hospital for ten days on a ventilator and needing medicines for seizures. But the neurologist said he could not believe the second brain scans taken at five days old were of the same child as the ones they took the first day. The neurologist actually called it a miracle. Raphael is a beautiful baby and now at two months has a marvelous wide smile. Though we may not know the extent of possible damage for some time, he has many many people praying for him even on the other side of the world. And he is already tenderly loved by all of us. They live in North Carolina, but we get to see photos and videos of him almost daily on face book. And they drove from North Carolina to Tennessee just for four days so his grands and great- grands could get to meet him. So, as 2018 began, I got to hold him and kiss his tiny feet and see him smile and hear his laughter. What a wonderful beginning for a new year.
A beneficial side effect for me of helping Julian through all this has been my regaining stamina and managing a lot of physical activity with very little pain. And in spite of relieving some of the stress by standing at the kitchen counter in the middle of the night eating half a peach pie and another time six jelly doughnuts mysteriously disappearing in two days, I haven’t gained weight.
When someone is in pain, whether physical or emotional, they are focused on the pain, and the small things that keep relationships pleasant are no longer a priority. Through most of our marriage, I have been high maintenance and Julian has been very low maintenance. There have been rough moments for both of us in adjusting to such an extreme change in that now. He doesn’t like to need help and I have always wanted a lot of it. He’s never been comfortable expressing unpleasant feelings. And I don’t really know how to help him, because I worked hard over the years to learn how to deal with my emotions without garbage dumping them on him. So, in spite of being married over half a century, we are still awkward in areas of our relationship. Sometimes, I feel like at eighty years of age, I’m still an amateur person.
Humor has been our glue and in many ways it is still our saving grace. But in this stage of our life, the challenge is to learn how to love across our differences in ways that help us relate heart to heart.
Last week, the doctor explained that a lot of the ongoing illnesses are side effects of some of the medicines that so far are keeping him able to breathe. So Julian is beginning to deal with the reality that his life is not going to get better. In fact, it will be a constant challenge to keep it from getting worse.
It’s a scary and sad time for both of us. Sometimes when he is sleeping, I feel like my heart is breaking and when I let myself cry, I’m afraid I will never be able to stop. Our family and our friends at church have been incredibly loving and supportive. And I find grace by reliving joyful memories of our fifty-nine years together. Julian suddenly lost a lot more of his hearing around Christmas. His expensive hearing aids made his ears itch so he never wore them. But now communication is much more difficult. A friend with similar problems has found something that has helped him and he is bringing it for Julian to try, so I am hopeful that soon we will be able to enjoy reliving those memories together.
Eileen and Julian in the South West of France 2015
One of the blessings of old age is a treasury of wonderful memories.
A warped sense of humor is also a great help.
I call upon the Source of Life,
the Power within and without,
the Power that makes for
Being and Nothingness,
joy and pain,
suffering and delight.
I call upon You to calm my fearful soul,
to open me to the Wonder of Truth,
the transience of all things.
In Wonder was I conceived
and in Wonder I have found my being.
Thus I call upon You, the Source of Wonder,
to open my heart to healing.
In You I discover the mystery of Life
and the necessity of Death.
In You I see all things and their opposites
not as warring parties
but as partners in a dance
whose rhythm is none other
than the beating of my own soul.
Denial may come, but so too will acceptance.
Anger may come, but so too will calm.
I have bargained with my fears
and found them unwilling to compromise.
So now I turn to You,
to the Wonder that is my True Nature.
I abandon the false notions of separateness
and embrace the Unity that is my True Nature.
I surrender not to the inevitable but to Surprise,
for it is the impossible that is Life’s most precious gift.
My tears will pass
and so will my laughter.
But I will not be silenced,
for I will sing the praises of Wonder
through sickness and health;
knowing that in the end,
this too will pass.
Written by Rami M. Shapiro in his book
Accidental Grace Poetry, Prayers, and Psalms