Mark Myers

@mark-myers | contributor
Mark Myers is writer, public speaker, and the Director of Communications at CURE Childhood Cancer. He lost of his youngest daughter, Kylie to Ewing’s Sarcoma in February of 2015. His book, Missing Kylie is available on Amazon.com (Missing Kylie) and he blogs at www.markmyers.net
Mark Myers

Thoughts and Feelings of Dads of Children With Cancer

Men can be a different sort. We can think differently, share differently and act a different way. We can also deal with stress and grief differently. As fathers of children with cancer or other life-threatening illness, we must lead through a heartbreaking struggle with no discernible direction while somehow trying to cope with raw emotions that can be completely foreign to us. After all, we’re “supposed to” have it all together — at least that’s what we’ve been told. There are mothers in our community who might feel this way, too. The author with his daughter I can’t speak for all dads, but under a condition of anonymity, I collected some things we dads of children with cancer are feeling behind our stoic faces. Some are the fathers of survivors, some are in treatment now, and others have lost their child. While we might try not to show it, we do feel… we ache…and we hurt — often in private so no one else will see. These are things I think you should know… I think you should know I have no idea what I’m doing. I think you should know I’ve steered clear of counseling because I’ve always thought I was above that, but there is so much I need to get this off my chest. I think you should know that a few drinks in the evening is the only way my mind shuts off enough to sleep. I think you should know I can’t sleep in long bursts. I am basically tired all the time. Yeah, I tried Ambien but felt so drugged that I decided sleep deprivation was better. I think you should know I’ve spent my life being told I shouldn’t cry and now I cry all the time which leaves me feeling unmanly and weak. I think you should know this lack of direction is killing me. I would follow anyone who had a plan because I don’t have any idea how to lead this nightmare. I think you should know I see everyone differently now. It’s hard to be around people who haven’t been through what I’ve been through and I don’t love hanging out with other guys going through this because it only brings it all to the surface. I think you should know my wife is basically a stranger now. We look solid, but we don’t talk or communicate. I think you should know I’m having problems relating to my other kids. They seem distant and I’m afraid to be close to another child. I think you should know I have trouble concentrating and my work suffers. In fact, I don’t want to do this anymore but we need insurance so I’m stuck. I think you should know that on some level I feel like this is my fault. I think you should know that I would have died for my baby but wasn’t given the option. I think you should know that not only did I wonder “Why my child?” but I have actually wondered “Why not somebody else’s?” which made me hate myself for my own cruelty. I think you should also know that losing a child or having a child diagnosed with cancer or some other life-threatening disease provides you with significant perspective so that trivial things in life are just that. I think you should know I feel I did everything humanly possible from a research standpoint before my son died, but now I wish I had spent more time with him. I think you should know I replay every stupid investment or financial decision I ever made in my life that prevented us from taking part in additional treatment opportunities. I think you should know I feel inadequate all the time. I think you should know that every time I see on the news that some criminal that was shot several times only to survive and commit more crimes, I think, “WTF, God, really?” I think you should know there is a measurable amount of guilt when you realize that you think more frequently about your deceased child than you did while they were alive and well. I think you should know I am scared of not remembering the sound of my son’s voice. I think you should know that up until my son passed away I never thought he would die. I think you should know that my surviving son has to live with his parents’ continuous and irrational fear that something will happen to him — even in the most innocuous everyday activities. I think you should know that I haven’t yet decided if I want to live. I think you should know I feel guilty that my son is alive while so many other men’s sons are dead. And I am afraid that my son will die too. I think you should know it is OK to talk about my son even though he passed away! I think you should know that even though I look like I am doing fine, internally I am a mess. Every day is a struggle. I think you should know that the words “I love you” are sincere and I use them more often than I did before diagnosis — and I mean it more. I think you should know I have a hard time feeling sad for adults that pass compared to the loss of a child. I hate that I have a hard time feeling compassion for my friends who have lost parents recently. I think you should know I’m lonely. I think you should know I am always second-guessing whether our treatment plan was the right thing to do. I think you should know I am afraid that the cure for my daughter’s cancer was so close to being available that it could have been used to save her. But I also really hope it is so that other children can be saved. Such thoughts leave me a twisted mess. I think you should know my family looks well, but I live in fear of relapse. I think you should know I still get very anxious when clinic is coming up, and at every bruise, weakness, tired feeling, or any other thing that might be a sign of a problem. I think you should know that I hide my feelings and fears so my boy doesn’t think he has anything to worry about. I think you should know that while I look confident, I’m scared as hell. I think you should know I don’t get to show my fear and concern. So even when there are things that do warrant concern, I have to bottle it up, put on my confident face, and be the voice of reason when all the while, I’m scared to death. I think you should know that sometimes I feel guilty for wanting to be numb or distracted because memories can be too painful at times. I think you should know I’m not as strong as you say I am. I am weak and vulnerable. I cry behind closed doors and live in fear most days. I have learned to wear masks so that people don’t have to see what I don’t want them to. I crave normalcy but I’m not sure I will ever have it again. I think you should know the simple tasks like yard clean-up and mowing can be extremely difficult. Not because of the work aspect of it but because it’s something my son loved to help do. I think you should know, after 16 years, I still miss my boy! I think you should know I lost myself somewhere in this journey and I can’t seem to find my way back. The author with his daughter If you or someone you know needs help, visit our suicide prevention resources page. If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 o r text “START” to 741-741 . Head here for a list of crisis centers around the world. We want to hear your story. Become a Mighty contributor here .

Mark Myers

The Challenge of a Holiday Season After the Loss of Our Child

“Can we play in the leaves, Daddy?” she asks whimsically. “Sure we can, baby. I’ll get the blower.” Eyes full of wonder, her mind races as she builds on her request. “Can you make a pile big enough that I can jump out of the window onto them?” I laugh. As a manchild, I give due consideration. As a father, I respond, “No, I don’t think that would be safe.” Undaunted, she pokes out her lip as last children often do in an overt attempt to tug at my heart. “Please…” Why didn’t I do it? Why did I say no? We live in the woods. Acres of trees. Why would I ever have turned her down? I didn’t know what was just on the horizon, just past that season. I didn’t know it was her last healthy fall. I was concerned about her safety. I was worried about what her mother would do to me if her baby broke her leg during a dad-sanctioned event. I said no. Soon her leg would hurt on its own, and poison much more dangerous than a jump into a pile of autumn leaves would course through her veins. I should have let her jump before cancer pushed aside those carefree joys of childhood. I should have raked up every leaf in the city and made a soft blanket to cushion her fall. Instead I said no. We are heading into our second holiday season without Kylie. We won’t get a turkey drawn with crayons, and we won’t be recognized as something for which she is thankful. She won’t rush to the fireplace to see the note from Santa or tear through wrapping paper to see what he left. The “won’ts” pile up like leaves in the fall, but without their vibrant brown, orange, and yellow hues… without the familiar smell of the season that turns our thoughts toward home. Our “won’ts” are black and gray. The holidays are tough and begin with the changing of the trees. For me, there is symbolism in the process. The leaf springs forth, grows to its proper size and shape before withering and falling to the ground. While the tree remains and grows, that individual leaf is gone. The tree may whisper to future leaves about their predecessors. Maybe a tree keeps a record of its life deep within its bark so it can boast of mighty branches and remember leaves that fell to earth prematurely. We will have to do that. Our family tree will grow to include branches that never knew Kylie – never saw her smile, never heard her sing. They will know her only through our stories and memories. That saddens me. It’s the leaves. You ask me what challenge comes with the season, and I answer that it is the leaves. They bring this season. They usher in Halloween with its costumes and candy and they warn us of what is coming: Thanksgiving and Christmas. I blame the leaves and I blame myself sometimes for not building a pile of them and saying, “Anything you want, baby.” Anything you want. How will I respond? I intend on building a massive pile of leaves and throwing caution to the wind. I will jump. I will invite others to join me. And I will live fully until it is my time to wither. Then the tree can tell its stories, but I will be gone with her — slaves to the wind and rain no more.

Mark Myers

Child Loss, Cancer and Forgetting My Daughter's Best Friends

“Hello, Mr. Myers,” she said with a beautiful smile. Startled, I replied in kind. She stood before me in anticipation while I watched the sun peak through her golden hair. Searching for something to say, I told her that I liked her dress. “Thank you. When we went to the store, I made sure it had some yellow in it,” she beamed as she twirled slightly to let the flow of the dress boast its color. “Kylie would love that,” I answered. “I thought so, too. Well, I’ll see you later,” she said as she bounded off toward her friends. I watched her rush off until she was engulfed in a sea of young women all flaunting perfectly-styled hair, manicured nails and the prettiest dresses their closets could produce. The boys – awkward in their ties – stood off to the side bucking horns, pretending not to be fascinated with their more delicate classmates. At 14, I could see the beginnings of the magnetic pull they would deny as long as possible, then succumb to as if they ever had a choice. I watched the group laugh and tussle beside the still pond until called inside by someone in charge. As they moved, I stood transfixed on the scene of this place and these children. It was so natural and right, yet a weight deep inside of me told me something was missing. My golden-haired friend waved at me and beckoned me to follow. “You comin’?” she called (In the South we tend to be forgiving of the lack of a closing “G” – especially when it rolls through the lips of a pretty girl). I raised my arm. “Yes, I’m coming.” I needed to go in. After all, I was soon to be called to the podium to speak. I was there during this graduation week to thank her friends for how well they loved Kylie during her sickness. I should be in my seat waiting for my cue. But I couldn’t bring myself to budge. My mind reeled, and my feet were frozen to the promenade beneath me because I had no idea who she was. Photo by Cindi Fortmann Photography I should have known her instantly. She was one of Kylie’s classmates and a friend since the first grade. There was a glint of recognition. I’m sure she had been in my car on field trips and in the classroom when I taught enrichment days. I knew she had been to my house for birthday parties. Still, her name escaped me — a fact that rocked me to my core. It means I’m forgetting. It is amazing what a couple of years does at that age. While Kylie is frozen at 12, the rest of her friends have blossomed to 14 and are all a head taller since I last saw them. Photo by Cindi Fortmann Photography I will never know what Kylie would have looked like at this age. Cancer stole those years from us. It stole height, growth, maturity. It mercilessly took graduation, blessing dinner, a celebratory leap into the murky pond and a rising high-schooler with an unlimited future. Cancer is a ravenous thief. And now I wonder, what else will it steal? She is relegated to pictures, videos and memories. Will it steal those? I am now 48, and she lived only a quarter of my life. Swaths of my past are but faint glimpses buried in the deep recesses of my feeble mind. Please! I beg! Let me remember her. Don’t let me forget the sparkle of her eye or the titter of her giggle. Let me hear her voice clearly until I hear nothing at all. I feel like a victim held at gunpoint, only I’m not begging for my life – you can have that. Just please don’t take her out of my head. I want to savor each morsel. I want to remember her — every bit of her. I don’t want to forget a thing. Aging is a tragic cruelty, and memory loss is part and parcel to it. But I fear this isn’t loss. No, I feel like my insatiable enemy isn’t done with me and is taking more piece by piece. Hasn’t this thief stolen enough? Please, leave me the little I have. Don’t wipe her from my mind. Yet I have forgotten the delicate face of her friend and I am utterly terrified of what cancer will steal next… The Mighty, in partnership with Fuck Cancer, is asking the following: What do you wish you had found on Google when you were first diagnosed? Find out how to email us a story submission here .

Mark Myers

Advice for Parents Coping With Grief After Losing a Child

The sad man trudged alone in the dark of a miserable, gray night when a sudden shock of yellow caught his eye. “Taxi!” he yelled with his hand raised. The right tire of the cab sloshed into a puddle just before reaching the curb, splashing murky water all over its fare, adding insult to his already dank prospects. “Where ya headed?” the cabbie asked pleasantly after the man settled in his seat and shook off some of the dampness of the road. “There,” he said resolutely. “Just away from here.” “Well, I can drive anywhere or nowhere,” the cabbie reasoned. “But it would help to have a destination.” The man looked into the small mirror, locking eyes with his driver. “I don’t care, really. I just have to leave this place.” “OK then. I’ll shut up and drive.” He lowered the gearshift and edged into the empty lane. They drove unhindered for several minutes under green traffic lights and beside dark buildings on streets as quiet as the cab’s interior. The man in the backseat reconsidered. “I didn’t mean it that way. It’s just that here…” He paused. Then, noting a profound sympathy in the cabbie’s eyes, continued. “Here hurts too much.” “I’m sorry. Let’s just get somewhere and maybe we can figure out where you want to go.” They drove on in silence until the unspoken words mashing around in his head poured out. “All this time I thought I knew. I thought I had it together. I’ve never been without a plan before. I run a company — a company I started from the ground up — and I have a great big, happy family. I don’t just flop around helplessly without a plan. I always thought life would be the same way… that everyone would be happy and things would work out in the end.” “That’s not how endings work. Life has a way of interrupting plans,” returned the cabbie knowingly. “So does death.” “I know that now,” replied the man sadly. “But how do I get back? How do I get back there? Back before the pain… where it was good.” “Oh, you can’t go back. Back is to the pain. Back is where life broke things. What you knew before the pain is gone and ‘back there’ is no place you want to be. You want to go ‘there,’ not ‘back there.’” “Have you been there?” “Yeah, I’ve been there.” “Can you take me? Right now? I’ll pay anything!” “No, I can’t take you there. I’m sorry. I wish I could.” “But you know the way?” “I know the way I got there. My way. But everyone has to get there on their own — by their own path.” “Some cabbie you are…” Because of the somberness of the conversation, they both tried to stifle their smiles. But neither could. They laughed — a momentary respite from the gravity of the ride. “Let’s pull over here and see if we can find your ‘there’ on a map,” suggested the cabbie as he wheeled under the protection of an overpass. He reached into the crowded glove box and fished for the map he wanted before slamming it three times until it held fast. Sheltered from the elements by concrete and rebar, the two exited the cab and met at the front of the car. “This is the map someone gave me,” the driver said as he unfolded it and spread it over the hood. After looking it up and down, the man said in extreme disappointment, “It’s blank.” “Not really,” replied the cabbie. “You see it’s got this ‘H’ for here and way on the other side it has a ‘T’ for there.” “That’s it? Not really helpful. What about all of the white space in between? Are there roads? Water? Mountains?” “I’m sure there are all of those things, along with valleys, swamps and quicksand. But nobody can predict what difficulties lie ahead of you, so they couldn’t very well put them on the map. The key isn’t the obstacles you face. The key is the legend,” he said as he pointed to an inscription on the bottom right. “All it says is ‘F’ with an arrow pointing upward.” “That’s right. Forward. You have to move forward. That’s the only way to get to ‘there!’” “And no one can help me?” “I didn’t say that. I’m here, aren’t I? Unfortunately, there are a lot of us who have made this journey before you and many making it alongside you right now. We’re a close-knit group — the friendliest lot of losers you’ll ever meet. If you get tired, one of us will carry you for a while. That’s how it works. You’ll never be alone in this. And when you’ve made your journey, you can have my hat and drive the next guy. I wish it were different, but they just keep coming.” “When I get there, will I be whole again? Will the pain be gone?” The cabbie looked down at the pavement wishing he didn’t have to answer this hardest of questions. “I’m sorry, but you’ll never be whole again and there will always be pain. Things can never be the same. The ‘there’ you thought you were headed to doesn’t exist anymore. That ‘there’ is gone forever and the new ‘there’ will always contain some measure of pain from the past. You are forever changed.” They stood together in sadness, each mourning the loss of their former good. “I want my wife to come,” said the man resolutely. “I want her to be in this cab with me and we will get there together.” “No, she can’t get there with you. She has to go in her own time and in her own way. Although you are experiencing the same pain, you can’t travel side by side. You can’t pull her along. Likewise, she can’t push you. You will be together through the whole journey, but you will go at a separate pace, hit different impediments and take different routes. Does that make sense?” “Not a bit.” Another shared smile. “I’m just saying that you will endure this pain together, but handle it differently. You have to lead by taking the first step forward. You know that, don’t you?” “But I’m scared.” “You should be.” “I don’t know where to go.” “How could you?” “What if I take a wrong turn with them behind me? My wife and my kids, they will see every mistake.” “You will veer off course and indecision will become a fast friend. But you’ll right yourself and your wife and children will see you and respect you for moving. They have no clue where to go, either. They’ll follow you, I promise. Making mistakes is part of this journey. Just remember that you’re not alone.” “I feel so alone.” “Feelings can betray.” They stood in silence as the pounding rain slowed then finally ceased altogether. “I’ve got one more thing for you,” the cabbie said sincerely. “I hope it’s more help than the map,” replied the man with a hopeful smile. “It is. It is all you need.” With that the cabbie wrapped the man up in a strong embrace and held him while he wept. “It’s love. Love is the only thing that can get you there,” he whispered. The two stood together until the man was ready and finally took out on his own into the cold night with no foreseeable direction for the first time in his life. Written for my friend, Michael, upon the death of his beloved son, Grant. I love you and will do anything to help you find the way to “there.” Follow this journey on Life in Porting by Mark Myers. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.  

Mark Myers

To the Other Dad in the Pediatric Ward

I know we didn’t talk much because we were both wrapped up in our own nightmares, but I wanted to tell you about a vague memory I have — probably one of the earliest burned in my brain. It must have been around 1973 because I was at prime lesson-learning age for a boy. My friend Tommy was over, and we decided to play marbles. You looked a lot younger than me. So in case you don’t know, those are spherical objects you must manipulate with your hands for entertainment because they have no electronics embedded inside. I know, sounds primitive. The problem was that I’d been given a taw by my grandfather and Tommy wanted to use it. Back off, pal! My little self had no intention of sharing that new marble — it was way too special for me to be touched by someone else’s grubby mitts. This didn’t set well with Tommy, and a fight ensued that spilled over into the hall and eventually into the kitchen where my mother was cooking. My mother did not appreciate my selfishness. Knowing I was in trouble, I closed my hand over the marble and shoved my fist in my pocket. An inquisition began during which Tommy truthfully laid out everything. For my part, wrong or not, I was stubborn enough to keep my clenched fist in my pocket and the two of them weren’t strong enough to wrangle it out. Frustrated, Tommy left and my mother gave me one more chance to give her the marble. I refused. My course was set. I had not yet been convinced of the propriety of sharing. When my father came home, I was enlightened — not only about sharing, but about respecting my mother. I am fairly certain I ate my dinner standing up that evening. I have been married long enough that I share pretty well now. I do grimace if anyone wants to use one of my tools or even set foot in my shop. But most of the time I get over it. I also have an issue with the console of my truck. I really don’t want to share that space even with my wife’s little lipstick tube. I don’t know why. This may sound rude, but I have something I don’t want to share with you. I will hold this tightly in my closed palm and do everything I can to keep you from seeing or touching it. I don’t want to share it with you. In fact, I would lock it in a vault, hire security and do nearly anything to keep you from it — because it is simply unbearable. I don’t want to share this with you. I don’t want you to know what it is to yearn for the return of something you can’t have. I don’t want you to live in the past because the present only brings pain and regret. I don’t want you to lie hour after hour staring at a dark ceiling because you can’t turn off your mind long enough to sleep. I don’t want you to look into the tear-stained eyes of your wife wondering if she will ever smile again. I would do anything to keep this from you. I don’t want you to have to tell your precious child that they are going to die and watch as they process the information. I don’t want you to say goodbye, that you will see them again someday in another place. Likewise, I don’t want you to yearn for the hastening of that day because this life without them is too hard. I don’t want you to smell the dirt of your child’s freshly dug grave. I don’t want to share this burden of guilt as a father and husband — guilt like a thick winter coat buttoned and zipped so tightly you cannot remove it whether it is justified or not. I don’t want to share this with you. I will buy you a thousand marbles and even give you the special taw I withheld. I don’t even know you, and I would do anything in my power to keep this away from you — not to share this thing… But if we must share it, we will shoulder it together and do everything within our power to keep our fists in our pockets so that no one else gets to see… Deal? “Game of Marbles” by Karl Witkowski

Mark Myers

The Fear of Grieving Parents That People Will Forget Their Child

What is your greatest fear? What is it for you — that thing that gives you shudders just to think of it? Thunderstorms? Dogs, snakes, spiders? Heights or maybe confined places? Perhaps it is something psychological like public speaking, failure or being alone. Most of us are afraid of death. Everyone has something they fear in varying degrees — even Chuck Norris. Your list of fears might be long or it might be short. While I don’t love snakes, I know my greatest fear is being eaten by a shark. What are the odds, right? I go to the beach one week out of the year and stay in the surf. Oh, I wade out and play. But I always I keep a wary eye on the horizon and make sure there is at least one person bobbing between me and the deep blue. I call him “chum” and he is my harbinger. When the shark pack pulls him under, I figure I’ll have enough warning to swim to safety. As a child of the 1970s, I blame “Jaws.” Sharks didn’t exist for me before then. I am not sure if I had yet visited a beach when I saw the movie. In my young mind, the Florida coast became full of 25-foot man-eaters that could beach themselves for the right meal. A boy doesn’t just get over that. Yes, sharks are my biggest fear. At least, they used to be my greatest fear. As grieving parents, my wife and I are now living out the greatest fear of many: the fear of losing a child. Except when at the beach, I am an eternal optimist. I never in my wildest dreams thought this would happen to us. This sort of thing happens to other people and we are the type who rally to support them. Even when my daughter Kylie was diagnosed with cancer and the prognosis hovered at 30 percent, I didn’t waiver in my belief that we would win. I wish I could take my chances with a shark instead, because I can avoid saltwater and remove any possibility of attack. Unfortunately, we fell on the wrong side of the percentage, and the resulting grief is much like a shark. It is cold, unpredictable and unrelenting at times. It uses triggers but doesn’t require them. It sets traps, lies in wait and springs at inopportune and random times. Losing a child is something to be feared. At one point, we sat down and listed the things we lost when Kylie died. We lost joy, sweetness, hugs, our peacemaker. We lost patience, enthusiasm and energy. Our artist is gone. A lovely soprano and incredible actress has left the stage. We no longer have an affiliation with our beloved school — it was stripped from us early. We lost potential… seemingly unlimited potential. We lost a great deal — yet I find I don’t fear most types of loss much anymore. In fact, I don’t think I fear much of anything. I still have a healthy respect for the killers of the deep, but even death has a strange allure because my baby will be waiting there. You know what I do fear? I fear you’ll forget her. I fear her image will get fuzzy and fade away. Mark’s daughter Kylie And that is what I believe is the greatest fear of anyone who has lost a child: that he or she will be forgotten. We fear that because their lives were cut short, they won’t matter enough for anyone to remember. Our children didn’t live to accomplish what they were supposed to accomplish — the things that would make them memorable. So how will the world ever mark their short time here on Earth? That is why so many foundations and charities are created in children’s names. It is why songs, poems and books are written in their honor. In the great search for the meaning of a life cut short, we parents yearn for another soul to share our mission to remember. Do you remember Kylie? Do you have another friend who has lost a child? I can’t speak for them, but I love hearing stories about her — things I didn’t know before. Not only does it tell me she was special to that person, it lets me know that someone else is helping to keep her flame from being extinguished… that I’m not alone in this awful vacuum. I just want to know that even though she left her potential unfulfilled, her life mattered. So here is my point and my charge. If you know a bereaved parent, tell them you remember. It doesn’t have to be much. Just something that will let them know they aren’t the lone bearer of the candle. Someone saw a play recently and went out of their way to tell me, “Kylie would have loved that!” I later saw a friend of hers who told me how Kylie had made up a pretend brother in second grade. Both were small gestures, yet meant the world to me. They know… they remember… she’s with them, too. Her life had meaning to more than just me because here memory remains clear to someone else. Our fears may not be the same, but we all fear something. You can quite possibly allay another’s greatest fear today by assuring them their child will not be forgotten. It may not seem like much, but it may keep them above water for one more day. And we all should stay above the tide, because I know what is lurking down below… Mark’s daughter Kylie Follow this journey on Life in Porting by Mark Myers. The Mighty is asking its readers the following: Describe a memory with a loved one you didn’t realize you’d held so dear until after they’d passed away. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.