Sunset over the bay, Ocean Beach, NJ Christians believe in the resurrection. I had a friend, Dave, who died after a battle with brain cancer. A few of us were sitting around discussing the biblical story about Jesus coming back from the dead. In this story, he shows up while his friends were having a meal. They don't recognize him until he did something familiar (in this case he broke bread around the table.) Then the scriptures say that their "eyes were opened and they recognized him." (Luke 24) As we were talking about the text, someone asked, "What would we do if Dave walked in the room right now?" I've never forgotten that question. What would I do if someone I loved came back from the dead? I'd freak out. How about you? Christians believe in resurrection. I have a friend who served a very small church with a declining membership. They were a farming community. But instead of corn, those fields are filled with homes. And those homes are filled with families who who commute to work and spent their Sundays at soccer games. In the last 20 years, there had tried programs hoping to resuscitate the life that they had known. There was even a suggestion that they reintroduce the spaghetti dinners to raise enough funds to pay their bills. My friend offered what I believe was a prophetic word when she said, "Christians don't believe in resuscitation; we believe in resurrection. And in order for something to resurrect, something must first die." While I was a chaplain, I watched a group of doctors resuscitate an elderly gentleman. Resuscitation is a gruesome act. It often involves broken bones and blood. While physicians were desperate to monitor blood pressure and breathing, I was monitoring family, vulnerability and impending grief. Everyone in the room wanted to save life. I wanted death. Resuscitation is about holding onto the life we have. We hold onto, we cling to our lives – exposing it sometimes to gruesome acts just to keep what we know. We try all kinds of things to resuscitate the life that we know. “If I do this, we can keep this.” “If I accept this, then we can stay here.” “If we adjust this or that, then this or that will stay safe.” We fight death; we fight loss. We ward off death; we resuscitate. Living with chronic illness is about managing mini-deaths. When Pete and I can no longer do certain things or go certain places, the adjustments that we have made often seem like small acts of resuscitation. Why? I cling. I cling to the life we had. I cling to the dreams we dreamed together. I cling to the life I thought I would have. But when a dream is dying, or MS has taken Pete's ability to walk, I'm wondering what would happen if I had the courage to say, “do not resuscitate?” Do not resuscitate that dream. Let it die. Wait for resurrection. I know what happens if I don't let dreams die. I wake up each day proverbially breaking bones and cleaning up the blood from another round of resuscitation. Exhausted and spent – still living with the half life that I won't let go of. Christians believe in resurrection.
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My chaplaincy was spent at a “trauma 1” center. I watched summer nights yield knife fights and gunfire. I caught a burly, tatoo'ed man in my arms as his wife was wheeled into the ER. She lost control of her motorcycle while trying to avoid a truck. I sat with a widow whose husband fell off a ladder affixing Christmas lights. The definition of trauma is any situation or event that distresses or disrupts. In other words, if we are traveling one way and something stops us in our tracks – that's trauma. I hit someone; I stop them from whatever they were doing – that's trauma. Trauma doesn't necessarily have to be a damaging physical event but usually our physical bodies are involved. But the trauma that continues to inform much of my understanding of our ability to control life happened when two teenagers made a suicide pact. My beeper went off – Code 40, Trauma, 5 minutes by ambulance. One boy, dead on arrival. I never saw him or his family. But his friends were surrounded by dozens of hands, each in control of one portion of this young man's treatment. The chaplain reports to a trauma call. I typically stood right outside the room and the door was often left open. I held the space as sacred – I whispered prayers. I watched; I breathed. In a frenzy of doing everything within our power, I represented what is beyond our power. I wasn't alone outside the room. Other physicians waited their turn, patient advocates looked for contact information while security guards cataloged the patient's belongings. The guard found a note, began reading it and looked up – his eyes searched for me. “Are you the chaplain?” “mh hm,” shaking my head. He handed me the paper. I began to read a scratched out note that laid clear intentions of a suicide pact. I took a deep breath,looked up from the note to find four physicians standing over my shoulders reading the note. I touched them lightly on the shoulder, the arm, “Hey, you ok?” At first they didn't say anything. They didn't want to look at me. As the chaplain, I represent all of the things that are out of their control. Again doctors and nurses are trained to do everything in their power to heal. My presence reminds them that not everything is within our power. And when trauma happens, we find so little within our control. I tried to get their attention again, “Seriously, everyone, how are we doing?” One finally spoke, “It pisses me off.” Another spoke up, “Stupid kid, he writes the damn note and he survives while his friend dies. What's he gonna do now?” “He wanted to die. Look at all that's going on to save him right now.” Our eyes glanced up to see all of those hands working diligently in the trauma room. Before you think “doctor's aren't supposed to talk like that,” I want to make sure I say I learned about courage and diligence from hospital physicians. I learned to do the job in front of me, with all that I've got until my shift is up. Then I learned to trust your colleagues to take over for you. I learned to take small breaks in between crisis. After talking through frustration and making sure they were heard, I folded the note and handed it back to the officer on duty. With a sad smile, I asked the patient advocate to call me when the young man's parents arrive. I found a seat in the hotel lobby where there is a water fountain and a gas fireplace. I caught my breath and tried to imagine this family's next 48 hours. I whispered prayers and cultivated a spirit of peace and acceptance, preparing myself to look into the eyes of his parents. A couple hours later, after the psychologists and social workers had seen the parents, I knocked on the door, both parents stood beside the bed, a physician checking his vitals. I'm Beth, I was the chaplain on call when your son arrived. “Did you see the note? I nodded. “Did you?” I asked. “Yes.” And after a pause, she said, “We don't understand.” “I imagine you wouldn't.” Tears were dripping on her cheek forming a continual streak her right cheek while her left eye was being blotted with a tissue. After a period of silence together, holding the sacredness of this space,I touched her shoulder and said, “Be kind to yourself.” He was to be moved to a facility soon. I told her that she would remain in my prayers – for strength and wisdom and that she would extend kindness to herself. I packed my stuff and prepared to leave my shift, passing on information to the next chaplain on call. I remember the drive home. It was not quite gray. The sun shone through the wispy clouds here and there. There was a slight breeze. I watched as the world began to wake up – a woman walking on the sidewalk, a guy putting out a rack of shirts at a storefront. When I arrived home, I made coffee and found a place on the couch to stare out the window for awhile. What just happened? A person tried to take his own life; a person was unsuccessful in trying to take his own life. Unlike the majority of the people who enter the emergency room by ambulance, this one didn't want to be saved. He had planned for death. He had tried to take control and failed. It would take me another 3 months to realize that my struggle with this specific instance was about “control” and our lack of it. As a chaplain and as a pastor, I have developed a relationship with the fragility of life, the randomness of illness, the frightening reality of the world around us. But those things happen to us and we have no control. This young man had tried to take control – and even that was out of his control. Most people go to the doctor once/year. For those dealing with chronic illnesses, doctors are practically part of our families. Our doctors know our weekly activities; they remember our kid's names. Take for example, our chiropractors... Dr. Mike and Dr. Heidi. I've gone to the chiropractor my whole life, not Pete. In the 2nd year of his diagnosis, he gave it a try. I'll never forget the first adjustment for him – he slept through the night. He couldn't remember the last time that happened. Sleeping for the chronically ill is currency. We assume with MS that his neurons have fired five times in order to make a complete circuit making it possible to do a simple task like move his right leg. Sleep is his friend. Sleep generates more energy. Sleep provides a reboot to his system. A full night of sleep = priceless. He goes to the chiropractor every week. I go every other. As a caregiver, I experience some stress... but still – every other week? Is that necessary? Physically – I'm not sure. Emotionally – without a doubt – completely necessary for me. It's one of the only times during my week where someone else cares for me. They look me in the eye and ask how I'm doing. They touch me, lovingly as a physician and companion on life's journey. They know a portion of my life better than anyone else. And they hold that knowledge in trust. One week, Pete was having a particularly bad week. He stumbled as he entered the waiting room. Dr. Mike took over. He helped Pete up. He got Pete started with treatment and then motioned to me to follow him. We were headed into their back coffee room. Having never been in there, I took in the sights of their personal space – nothing more than a closet really with a coffee maker, some mugs and a place for their stuff. I looked back at Mike and he asked, “How are you?” fully expecting an honest answer from me. I started to say “this kind of thing happens all the time. Pete gets tired. This has been a bad week. And he interrupted me and asked again, “but how are you?” I had been holding back tears probably for three days but here they come – I was determined to at least control the pace they would fall. While I was attempting to control my tears, he told me about his experiences with his dad who has parkinson's. He used words like frustrated, disappointed, exhausted. He asked if I was taking care of myself. While I appreciate this question, I often feel judged by it. If my answer is yes then I suppose that means that whoever asked thinks I look horrible or run down. If my answer is no, it's because I can't find the energy or time and then I feel like a failure. And yet when people ask, I'm am reminded that others think me caring for myself is important. That's nice. Truly. But a better question might be, “How can I offer you care? Not Pete – you?” So Mike asks, “Are you taking care of yourself?” I say, “Yes, I exercise, I do yoga, I read, I write, I cook. I have friends and... I come to the chiropractor.” He smiled and waved me out of the coffee room and into a treatment room saying, “Let's get at that then.” Lying face down on the table, I judiciously allowed my tears to leak out while Mike massaged knots out of my back and straightened me out again. Having cared for me, he grabbed my hands and lifted me back into my life as a caregiver. This is one of the pieces from my sabbatical, an intentional period of time that I took to reflect and write about experiences of providing and receiving care in my personal life and professional life. Caregiving. What does that mean? I mean really – what does it mean? I give care? Like a present on a birthday. Here you go, open it – it's “care.” I care. No need to say what I care about. It may not even be you. I care. In other words, I no longer say I don't care. A friend of mine was told that she doesn't care by her 10 year old son. What? What do you mean I don't care. Well, mom – you always say - “go ahead, I don't care.” What? Of course I care, she said. But his reasoning was sound. She did often say she did not care. Can I go to the neighbor's to play? I don't care. What do you want for dinner? I don't care. Mom, can I bring this to school? I don't care. What should I have for snack? I don't care. Coke or Pepsi? I don't care. And yet here is a gift, wrapped for you in colorful pastels. There is no bow however. - I couldn't find a bow. And no need for a card because I didn't think you would care. Go ahead – open it. And as I smile watching you you rip at the colors to find a box of “care.” Thank you. You care. Yes, I do. No, it is not that. Caregiving. What does that mean? I mean really – what does it mean? I give care? I give care, offering it up like I do with my weekly offering in church. The plate is passed and I reach into my wallet, leafing through to find that there is indeed cash in a cashless society. I count out an appropriate amount and fold it as to hide my amount of giving. When the plate is passed, I overt my eyes to the usher but smile nonetheless when I give my care, grasping the plate and pass it to my left, again averting my eyes yet smiling. I look down at my knees and then come back to reality the piano is playing a haunting tune. Why haunting? Why play something haunting while we are giving our cares? Unless the music is taking them away. I cast all my cares upon you. I lay all of my burdens down at your feet. And anytime I don't know what to do, I will cast all my cares upon you. Caregiving, carecasting... Ah... it means casting care like a fly fisherman. A long line with colorful plastic feathers at one end, attached to a hook. Switch, switch, switch – the line floats over head and with the flick of my wrist, I cast – switch. The feathery hook barely touches the water – luring the fish to the service with one question, “What was that?” Looks like lunch. Casting care. Care giving. A rhythmic flow of the thin, barely noticeable line moving to and fro – arching and falling like a giant bubble, like the ones we hope to create while playing outside with our children. Blowing bubbles, casting lines, casting care, caregiving. Small blue plastic container labeled “bubble magic.” complete with a tiny plastic magnifying glass looking tool. Lift it out to discover it is not made of glass at all. - it is filled with soap. Soap that when blown through will make bubbles. Lots of tiny bubbles. Sometimes streams of them. Sometimes one big large one – if blown with patience and intention. Stream of constant air pressure, the same pressure, the right pressure – don't stop, if you do it will pop. The bubble is growing and growing and growing and then it pops. Dip again, try again. Bubbles, lots of tiny bubbles. All around, go collect them, catch them. Watch them wash your arms and legs, one round spot at a time. Giggles, playing, life is good. When someone cares enough to blow bubbles for us to catch. I care. I give care. Yes, I give to another. But my motivation is still mine. I cast care like a feathery hook, I try to make right with the same patient intention with which I attempt big bubbles. Slowly, slowly, with consistent pressure. Until it pops. It always pops. Dip again, try again. Cast again – lure the fish to the surface with your feathery hook. Caring – for my own want for fixing. If I cast right, If I make the big bubble, then my care will work its way to a better life for me as well as the recipient of the gift of care. It is not a present just for you. This is one of the pieces from my sabbatical, an intentional period of time that I took to reflect and write about experiences of providing and receiving care in my personal life and professional life. My earliest memory of community life is Sunday school at Stelton Baptist Church. I'm not sure how old I was. But what I remember was that I was sitting at a table with a handful of others beside a window that let the fall sunlight in. There was an activity at the table but what I remember was that we were talking to one another. The raw ingredients are: a table, conversation, and "others." I spend my life trying to reproduce that memory. As the pastor of a church, as a mother, as a friend, as a colleague, as a wife - I try to reproduce moments where people gather around a table to talk with "others." It's easy to gather with people "like" me but forced community - intentional community with people that are different or with people that I do not know well changes me for the better. It's why I am a church person. Every week I gather with people who have certain things in common while at the same time span a variety of ages, genders, interests, abilities and needs. As a caregiver, I have longed for a community similar to the one that I find in church. Pete and I have wandered into a few MS support groups with hopes to find people who have the commonality of the same disease while at the same time can offer us a variety of ways to see that same disease. We have not found that group yet. Our first attempt at a support group went horribly. We drove to the East Brunswick public library - nervous, scared, and generally stressed-out - only to find that the group wasn't there. We were lost and so were the folks at the front desk. The amount of anxiety produced by this experience created tears and disappointment - the kind that are only subsided with fried food or cheesecake. We opted for both. I want a support group. Pete probably needs one, but hasn't asked for this himself. I am persistent and so we tried the same group again. This time I called first only to find that it was December and they were having a holiday party and this probably wasn't the best month to start coming. We tried again. This time, for some reason, the group had been assigned a different room that evening. The room was not conducive for folks with wheelchairs and scooters. The "leaders" of the group were visibly flustered by the change of environment. The air was buzzing with that frustration and my own anxiety level was not enjoying this experience. Although the group had said that all are welcome: those with MS and support persons, I was the only caregiver in the room. If you're a caregiver and you're in a room filled with folks who need help. Forget that... if you're human and you're in a room with a bunch of people who clearly need help... you help. And so I helped. I helped folks find a place at the table; I helped folks get around the room. I smiled; I poured soda. I held back tears. This time we did not drown my tears in fried food or cheesecake. We just went home and went to bed. We tried another support group - it was at a Presbyterian church. I thought I'd feel more at home in the environment, which I did. But I still was the only support person present. Pete enjoyed this group more because there was a speaker and a time for Q&A. It's interesting that he has more of a need for information than for connection. I have more of a need for connection than information. Some have suggested that I try a general "caregiver" support group. I haven't done that yet for a couple reasons. When I ask about the demographics of the groups that some have suggested I find that those groups are filled with two types of caregivers: those caring for their parents and those caring for a spouse with dementia. At this point of my search I began to wonder if I'm looking for something that I might already have. The other day, I was sitting in a restaurant with three women from church. We had met in Princeton to support a friend who had moved her husband into a long term facility. He has severe dementia. I have journeyed with her as she made this difficult decision. She and I were joined by a woman who has recently found a 2nd love in her life after having lost her husband to cancer many years ago. She's beaming - all the time. The fourth seat at the table is taken by a woman my age with two teenage sons. We settled into a corner table, surrounded by windows that let in the sunshine. A table of "others" - each with their ages, genders, abilities, interests, and needs. We each bring our perspectives, our hopes, our losses, our sadness, and our longing for "other." These people in my life make me a better person. They make me think. They look at me when I'm talking and their eyes say, "I am happy to share life with you." I don't mean to be legalistic with this suggestion but life in community is better than life without it. I still hope to find some room of caregivers to spouses with MS. But in the meantime, I am deeply grateful for the community of others that I already have. I am grateful for others who sit a table with me beside the window that lets in the fall sunshine |
What is this blog about?These are some of the reflections that I am fashioning into a memoir about coming to peace with my husband's diagnosis of multiple sclerosis.
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