My Sixth Sense

Telling someone you have chronic pain is a bit like saying you see dead people. He or she will look at you in disbelief because while the statement may or may not be true, there is simply no way to prove it. I have had chronic neck pain and unrelenting headaches for ten years. Yes, you read that correctly. A decade of my life has been spent tethered to my heating pad while I search for the elusive cure. Early on, when I was going through diagnostic tests as well as an entire CVS worth of medications, everyone who knew me was aware of my pain and inquiring frequently, mostly because I looked sick. After several months, when even I got sick of hearing myself talk about it, I decided that everyone else was probably fed up but just too polite to tell me to shut up. I decided then that unless someone specifically asked, I would not talk about my neck or head pain. I have one coworker, though, who would ask on a regular basis how my neck was and when I would honestly answer about how much pain I was in, her response was always something along the lines of, “I would never think you’re in any pain. You never act like it at all.” I could never tell if she was complimenting my ability to cover it up or if she simply didn’t believe me.

I guess in a way having this pain for all these years is exactly like walking around accompanied by a ghost. No one knows it’s there but me, and some folks don’t believe it’s there when I tell them. It’s with me wherever I go, haunting my dreams, waking me up in the morning reminding me of its presence. And like a ghost, even science cannot prove its existence. MRI? All clear. X-ray? No evidence. Blood work? Perfect. Take these drugs and you’ll be fine. No, I won’t be fine, thank you very much. I fill my body with pharmaceuticals and I’m still in pain. I have been on 24 different oral medications just for my neck and head pain. I have been injected with three others. I went through four rounds of useless physical therapy. I have collected diagnoses like my husband used to collect stamps. My first was migraine stamp from the early ‘80s. Here’s my favorite, though. I have a fibromyalgia stamp that was issued around 1999, but was then purchased by another doctor several years later. He wanted that particular stamp out of my collection. I bought it back in 2008. Facet joint restriction and cervical radiculopathy were also added to the mix. Just the other day, I received a newly minted diagnosis for my ever-growing collection: cervical myofascial pain syndrome. I would go on here, but the HIPPA police have just knocked my door down.

Yes, we were joking around with this selfie,
but this is what I normally feel like. 

And so I taught myself how to act. No drama school for me, however; I learned out of sheer necessity. I get up. In pain. I go to work. In pain. But when I walk through the door of my school, the performance begins. I go through my day in a ridiculous amount of pain but I smile. I work. I am a functional human. My coworkers sometimes see me popping Exedrin and at times ask if I am okay; most of the time, though, I can mask the misery with smiles and jokes. This is truly Oscar-worthy stuff.

It’s when I return home that the illusion falls to the floor. As my beloved husband watches, the mask of the day melts onto the carpet as I land on the couch, depleted and done with pretending. No need to pretend with him, poor man, he has seen and heard it all. He lets me take my daily naps and only when pressed does he tell me how worried he is about me.

No matter where I am, who I am with, what I am experiencing, or how hard I am trying to just frigging relax, the ghost is still with me. More than one amazing vacation has reached a point during which I broke into frustrated tears, telling Bill how sorry I was that I couldn’t enjoy myself because I was in such pain. Then I feel horrible for having said something because now he is aware that we’ve paid good money for a nice vacation enjoyed by no one. Worse yet, stress makes the pain worse, so the more I tell myself to relax and enjoy something, the more intense the pain is.

I have grown tired of keeping these spirits with me. I would like to be rid of them, but they don’t seem to realize that it is time to go. They hover around me like a morning fog that never lifts, an insidious veil of misery that no amount of sunshine can burn through. Yet I sit, painfully yet hopefully awaiting a brighter day.

Be Grateful Anyway 2017

Gratefulness is not coming easily for me this year. After the most painful, sad, and difficult two years of my life, I do not find much to give thanks for on this Thanksgiving Day. I hate to admit this, but I would like to skip over the holidays completely — just hide safely under the covers until the last stale Christmas cookie has been eaten and the final errant pine needle has been sucked up into the Hoover. 

But because I am an adult with responsibilities, this is hardly the mature thing to do. I have to get through the next six weeks with some semblance of normalcy, which in my case will involve not bursting into tears whenever I hear a sad Christmas song before running away to Key West, where I will watch the sunset every night while sipping Key lime iced tea. I must actively search for ways to be grateful, even if I have to resort to simple things like the fact that I can still breathe and dress myself. Maybe if I just start there: that even though life has thrown some tough things at me this year, I can strive to be grateful anyway. So here goes. The question is, just what am I grateful for? 

I am grateful for my family. Yes, I am missing my dad. Desperately. The rawness of his death has not diminished during the past two years. I am told that in time it will, but for now I feel the shock of it anew every time I realize that he is no longer here. I am also missing my mom, who passed away just seven months ago. But there are family members who were so present, warm, and loving towards me immediately after both my dad’s and mom's deaths that gratitude is simply too weak to describe what I feel for them. They provided the voice of calm reassurance. They hugged. They cried with me. They listened. They simply cared. Relatives from far away were there as well. One cousin and her husband, who just happened to be visiting New Hampshire from her home in Florida, drove five hours each way to honor her uncle (my dad) and comfort us. Another caring relative got out of an essential duty to be at my dad's funeral. He did it out of pure love. Other relatives emailed and called and provided love and comfort across the miles. I am grateful. 

I am grateful for my friends. I don’t have many friends that I consider close, but the ones I have are more precious than anything. Experiences such as a death definitely show you who your friends truly are. Friends texted and emailed and called daily to check on me. A friend I have adopted as a ”brother” drove three hours round trip to attend both of my parents' funerals — people he never met — to be there for me and for Bill. Friends that were unable to be there physically were always in touch to let me know their thoughts and love were with me. These are my true friends. These are the friends I know I can count on. Always. I am grateful.

I am grateful for my husband Bill. He came home from a fishing trip in Alaska and didn’t even get his foot in the door before hearing that his father-in-law was gone. He dropped everything — literally — and we got on with the business of planning what to do next. But even before that, he was the one who took care of everything for my dad financially. He was a wonderful son-in-law to my dad and they had a wonderful bond. Bill was with me every step of the way with my mom as well. We visited her every single weekend at her assisted living facility and then, when she became ill very quickly, drove with me every evening after school — 45 minutes each way — to visit my mom. He is my rock, my best friend, the love of my life, and the one whose shoulder may never be dry again from the tears I have shed upon it. But still he remains. Biscuit-loving, cat daddy, best husband ever. I am grateful.

As I am writing this I am suddenly struck by what I am most grateful for on this difficult Thanksgiving. Most of all, I am grateful for the 52 years I had with my dad ant the 54 years I had with my mom. Not everyone receives this precious gift of time. Some parents are gone much too soon. I know how blessed I was to have them so long. But it isn’t just time to which I am referring. I had the gift of 52 years with my dad. Fifty-two years of his kindness, his gentle spirit, his patience, his steadfast presence in my life. He taught my brother and me so many things, both practical and personal. We learned to hammer nails and shoot a gun. We learned to keep your word no matter what and we learned to mix cement. We learned that the simple things are the best things: raisin cake, rice pudding, a NASCAR race, time with your children, and doing your best. Always, always doing your best. I am grateful. And from my mom I saw creativity in every corner of our house — her afghans, her dried flower arrangement, her stenciling — and I can't help but believe that her creativity was a model for me to follow my creative pursuits. 

So that’s it then. Right now, my life isn’t what I want it to be. It’s difficult, it’s painful, it’s frustrating, it’s downright depressing. But I still have breath, I still have hair to comb (unruly hair, but hair nonetheless), I still have a husband and a cat and lots of love surrounding me. No, it’s not the best of Thanksgivings. But I will just have to do the best I can. And be grateful anyway. 

Strawberries

This was originally published on Authentic Writing Stories, an online collection of personal essays hand-selected by the moderators of a writing workshop I attended at the Omega Institute. 

I wanted strawberries. Frozen strawberries. Not the kind I buy today, individually quick frozen to maintain their perfect shapes and packaged in a convenient resealable bag. The strawberries I was longing for, whining for, were sugar-laden clumps of red, broken fruit, packed tightly into a rectangular cardboard container capped at both ends with metal that you had to pry off with a can opener.

My mother stood in her sewing room, which doubled as our laundry room, carefully transferring my dad’s undershirts and my summer tee shirts from our white Kenmore washer into the dryer. She was annoyed at me, irritated at my whiny behavior, wanted to be left alone with her work and her thoughts. I had never done this before. I was the model German child, always doing what I was told to do when I was told to do it and never acting outside of the accepted, stifled confines of our family. But somehow today was different.

The strawberries in question were always kept on hand in our freezer. They were an essential ingredient in what became my mother’s signature dessert. The strawberries were placed in the bottom of a large glass bowl, the frozen red brick remaining intact for several hours on our yellow Formica counter until finally morphing into what could have easily passed for strawberry soup. Next my mother cooked a box of Jell-O tapioca pudding mix, using slightly less milk than the side of the box recommended, resulting in a thick, sweet, gooey pudding. This steaming hot mixture was poured over the thawed strawberries but not mixed. The berries would caress the pudding in their own time, gradually seeping into the white, hot goodness, forming what looked like little red fiords. Eventually, the strawberries created a liquid cushion on which the pudding would ultimately float. This dessert was made and served every time we had company and I never saw anyone not take a second helping. And although I liked this dessert as well as anyone, I don’t know why, on this day, I was so intent on getting my mom to take out one of those frozen boxes of sweet berries just so I could have some.

Her annoyance, as always, was palpable. She ignored me, told me to stop, threatened to tell my father when he got home, but I persisted. When my whining finally turned into tears, she stopped moving the laundry and did something extraordinary. Without saying a word, she walked to the freezer and took out a box of strawberries. For me. To eat.

I realize this was probably an act of sheer exasperation or perhaps the only way to stop my emotional upheaval. But to me, in that moment, it was the most loving gesture I had ever received from my mother. It was no longer about the fruit, it was about her willingness to provide some nurturing to a little girl who felt lonely, sad, unloved.

The fact that this rare display of love was provided by food was probably the first sign of trouble I would not fully realize until I was well into my thirties. The nurturing I so desperately longed for, arriving as it did in the form of food, became inextricably linked to eating. Food began to equal nurturing. The love I could find nowhere else I could easily attain from a gooey, frosted brownie. A hug would emerge as an embrace from a log of chocolate-covered marzipan. And an “I love you?” Well, that required pizza after pizza after pizza.

I didn’t know where else to get these things. I couldn’t ask, wouldn’t ask, because even if I had, the answer would have been no. And food said yes.

Grief Grows Up

My father died 22 months ago and in that time, I have noticed that I am logging my grief much the same as new parents note how old their children are, using small developmental milestones.

I was not prepared for this birth. I was like one of those teenage girls one sees in the news who, at nine months along, claims to have no idea she is pregnant. Denial can be a wonderful form of escapism, until the truth comes forward to claim its rightful place. Giving birth to grief was the most painful experience of my life. Excruciating pain and raw emotion gripped my insides; contractions of my psyche that grew closer and closer together until the final push--the realization that this was real. My dad was never coming back. Then the screams, raw and loud and so foreign to my ears, even as I knew somehow that I was the source of these decibel-bursting sounds. 

As it reached two weeks old I was getting used to this new being in my life, but as my dad's birthday appeared before me, I began to experience post-griefshock syndrome, a sort of PTSD that occurs when a special date follows too closely to a birth. I took special care of my grief that day. I drew it close as if by holding it tightly I could will away the pain. I could not. My grief soon made room for post-partum depression. I knew it would. 

At seven months, Dadgrief had learned how to comfort itself, not with a thumb or a pacifier, but with food. As this was the age it could now feed itself, it did so with frightening frequency. This was so incredibly comforting. After every bite, the depression faded slightly as the food slid down. When the tears emerged anew, another bite would numb the feelings once more.

Twelve months came quickly and my grief learned to walk and run without help and how to greet other people. As these milestones were reached, I could more easily ask my grief to communicate with me. But all it could do was remind me of what was gone, what was missing, how this loss was a permanent fixture in my life, an unwanted chandelier illuminating nothing but pain.

At eighteen months, I gave birth again, this time to grief for my mother. The morning sickness was far worse this time, but the birth was less painful. All of the pain for this griefchild, it seemed, came before the birth as I cried heaving sobs that this grief was coming. My body was more prepared for the actual arrival of this being and though the screams may have been less intense, the raw emotion was in full control of my body. 

So now I have two beings to raise. Two distinct entities who will have to coexist in my house, in my body, and in my head. 

Momgrief will have to go through the same stages as Dadgrief but, when Momgrief is around three years old, they will be able to play together. They can run and jump and hide from me, but surely they will only play hide and seek, and I will have no alternative but to find them. They are, after all, beings that cannot exist on their own. 

At some point they will want the car keys and drive off, giving me time away from them. Eventually they will both get their own homes or apartments, returning only for birthdays and holidays. But because they are mine, born of love and nurtured by memories, they will remain mine until I die. These beings I have borne will not cease to exist until I do, because this love inside me will never die. 

The Fabric of a Life

Piles of clothing tumble through my fingers as if they are in a tremendous dryer set on slow motion. Work-worn flannel, silky polyester, toasty warm fleece, rough canvas. I touch each one gently and feel the fabric between my fingers, holding tight to both the living and the dead. In each bit of cloth memory is embedded; tiny moments in time I attempt to relive.

In the buttons on a plaid flannel shirt, I see my dad walking toward his garden to tend to the rows of potatoes that my mom will boil for dinner every night. I feel my mom's anxiety as I touch the neckline of the dark pink dress she wore to our wedding, her tense energy palpable as she entered into a frightening world of New Jersey, a place as foreign to her as America once was. My dad's denim overalls are stained with sweat and still covered in sawdust from the last time he wore them. There are an abundance of mostly blue polyester blouses because my mother hated to iron but loathed wrinkles even more. A camouflage jacket holds tight to gunshot residue from the last time my dad fired a gun while wearing it. Maybe it was the last time he ever fired a gun. I’ll never know. I find my dad's burgundy knit hat that he always wore when plowing snow. I hold it to my face and breathe in the pain of his loss. 

These are the clothes of two lives. My parents’ lives. They have left this earth; their clothes are being washed and carefully folded to be donated to charity. My brother and I have both chosen to keep items so that we may continue to feel them near us. My dad's closet was that of a working man: work clothes, plaid shirts for going out, one barely worn suit. My mother had so many clothes, yet giving any of them away seems so wrong to me. I do it anyway. These are only clothes, worn by the hard-working parents who raised me, yet every seam and each sleeve carries with it part of them. 

Only memories remain now. Between each tiny thread, no matter how ripped or well-preserved, there remains a part of their lives and a part of my life as well. I sort through those memories as the clothes continue their sad tumble; I file each memory away carefully as the clothes are folded, then hide the thoughts in a corner of my heart. The clothes will be gone, but my memories are packed away like the clothes, neat piles of my past woven together like thread, entangling me with the sadness of lives become dust. 

The Day I Became an Adult

The day I truly became an adult I was 51 years old, walking with crutches as a bulky, heavily Velcoed boot covered my left foot. I was sitting with my father in Room 206 of a nursing facility in Liberty, New York on an icy-cold January day. One generally thinks of adulthood as arriving with something tangible, perhaps the conferring of a degree, the purchase of a first home, or receiving a job in one’s chosen career. And while these life events have all happened to me and were, indeed, opportunities for growth, they did not force me into adulthood. No, the one who held those cards was sitting in front of me on that January day, tethered to a wheelchair, desperately trying to get up and walk out of that place — both in mind and in body — and go home.

As was our usual routine in the three months my dad had been at the facility, my husband Bill had dropped me off so I could have some alone time with my dad while Bill went to pick up my mom. I never knew what to expect during this precious private time before my dad’s lunch was served. My dad was always very awake, but his lucidity ranged from totally, 100% my dad, to a person I had never met before, to somewhere in between. Many times, especially during those first, terrifying weeks in the facility, he was filled with paranoia. He was certain my mom had left him and found someone new, he was sure his identity had been stolen, and he thought that Bill had taken all of his money and was raising chickens in a cabin somewhere in the Adirondacks.

​But that cold day in January was a good day. A really good day. My dad was extremely lucid, asking relevant questions about my mom and the bills, the upkeep of the house, and if the driveway was getting plowed. Completely normal stuff. He kept trying to get up, because he just could not comprehend that getting up most likely equaled falling. Over and over again, when he attempted to get up, I would gently put my hand on his arm and say, “Don’t try to get up. I don’t want you to fall.” He would sit back down. Try to get up, hand on arm, sit back down. Repeat. Over and over again.

At one point, he tried to get up but before I could reach out and touch his arm, he realized it was pointless and sat back down. That’s when it happened. He looked me squarely in the eye and said, “Are you disappointed in me?” I barely squeaked out the word “no” before my eyes were flooded with tears and I could no longer talk, or think, or breathe. This was my dad. This was the man whose praise was worth more to me than currency. I had spent my entire life trying to make him proud of me. And now he was asking if I was disappointed in him?

In that moment, with that one innocent question, the solar system of my life completely rearranged itself. As a child, I was always revolving around my parents, desperately searching for their sunlight to shine on me, trying anything I could for their pride to warm me. This was not always an easy task. My mother and father were not quick with praise and, since my brother was someone to whom academic and athletic success came more easily, I was always trying to accomplish anything that would equal his achievements. Then I would rotate my little planetary self faster and faster, trying in vain to grab any bit of sunlight I could to earn my parents’ approval. In my eyes, at least, I could never measure up. But I had tried, hard, from the time I was young and eager for praise until that cold January day.

Then my dad, so intently wanting to know if I was disappointed in him, shifted my personal cosmos. I suddenly felt that I was his sun. I wanted to warm him, to shine light on his fading memory, to let him know that it doesn’t matter if he can’t stand up, it’s okay that he can’t remember important dates, and things will be fine if he has a hard time buttoning his shirt. There will be good days when our conversations will be something I can hold onto and file away in my heart beside the lifetime of memories he has already given me.

My dad passed away on August 4, 2015. There were days when he was unaware of my presence, when all I could do was sit with him, be with him, and try not to let the sadness overwhelm me. As his dementia continued to take more things from him, things I could not even imagine, he was  always the dad I respected completely, looked up to with wide-eyed awe, and loved without limit. Because I knew that of all the things he lost, the gentle soul of the man who raised me with the finest of values — honesty, loyalty, and patience — remained whole and undiminished.

And that could never disappoint me.

Welcome to Lewyville

Travel is one of life’s greatest pleasures. Getting into a car or boarding a plane and being whisked away to another city, state, or country to explore its wonders always creates a sense of adventure, great memories, and the ability to understand how others live their lives. But the most important trip of my life did not involve a plane ticket or a car packed with luggage, yet it completely changed the way I saw my life and, more importantly, my father’s life with Lewy.

When my dad began his journey with Lewy Body Dementia, most of my emotions were, not surprisingly, sad ones. His mind was growing further and further away from me, and I desperately wanted to stop its inevitable departure. I was like a child whose balloon had escaped her tiny grip, reaching out to get it back but having to watch helplessly as the distance between us grew ever wider. I was powerless over Lewy.

One day I put my sadness into a little box and set it aside for a few hours. Then I did something radical. Because he was no longer able to travel to where I was, I took a trip to Lewyville with my dad. I put my hand in his, closed my eyes, and suddenly I was transported to a land that only existed in my father's mind. It wasn't a long trip, but it was one I will never forget. 

As I began to let go and shake off the last remnants of life as I knew it, my father's reality slowly came into focus. In it were vivid sights and sounds and smells and tastes I had seen my dad reacting to for months. But here in Lewyville, they were real.

My dad was a carpenter, so the first thing I noticed about this land was that there were tools everywhere. There were hammers and screwdrivers and nails and screws. Some were on tables and workbenches but most were floating around freely, available whenever my dad needed them. When my dad reached out for what appeared to be air outside of Lewyville, I could now clearly see the hammer he was grasping and the nail he was reaching out to grab. Then he wheeled himself closer to the wall. Before we were in Lewyville, the wall appeared normal; now I could see the repair my dad had been called on the make. The wall was in serious need of a carpenter; clearly, my dad was the man for the job.

My dad turned his head to respond to someone asking him a question about a measurement. Before this journey, he appeared to be speaking to no one. Now I could see the other carpenters working with him. 

When it was time for lunch, I saw a man seated at a table. As I walked closer, I saw that it was my grandfather. Soon my dad joined him and they sat together eating lunch, father and son laughing and chatting in German, my dad's face so luminously happy I began to cry.

I looked out of the window and saw the 40 rabbits my dad had told my mom he saw out on the grass. It had seemed like an impossibility but there they were, a cluster of 40 rabbits that seemed, well, normal. One of the 20 men who were shoveling snow in the hallway outside my father’s nursing home room tipped his hat to me. I waved shyly, embarrassed that I had ever believed they weren’t truly out there, clearing the snow. I could hear the shovels as they scraped the surface of the floor.

And then there was this: everywhere I looked there were images. I saw scenes of my dad as a child, my parents when they were a young married couple, my brother and me as kids, my dad working. These vivid images would appear for a moment. My dad would acknowledge each with a comment, then the image  would fade away. As I watched these images come and go, I realized these were my dad's memories coming into and out of his awareness. It was distressing to me when an image faded away; I wanted to hold tight to these images and the memories attached to them. But to my dad, they were just that: images that come and go like cottony white clouds, his attachment to them as elusive as to those clouds. 

Everything in this land seemed normal because I was in Lewyville. I was in my dad's new home and nothing that I saw or heard or tasted or smelled was unusual because this was as things were in Lewyville. This was my dad’s reality. This was home to him now. Soon it was time for me to leave and reenter my own reality. Before I left I told my dad how much I love him and he looked up at me, smiled, then reached for a wrench. 

I opened my eyes and I was still in his room, in the nursing home, surrounded by the sounds of caring aides carrying on their loving tasks. I had never left his room except in my mind. But traveling to Lewyville, even briefly in my imagination, enabled me to understand my dad with so much more depth and empathy.

Travel is typically fueled by a desire for adventure or relaxation. My journey to Lewyville, however, was taken for one reason: love. Understanding what he was experiencing in Lewyville gave me more compassion, more patience, and more love for the man who gave me so much all my life. I continued this journey with my dad and we walked this road together, step by step, until he passed over into another realm as death took him away from this earth. But the next time he reached into the air, I handed him the tool he needed because I knew just where to find it.