“Life is filled with unanswered questions, but it is the courage to seek those answers that continues to give meaning to life. You can spend your life wallowing in despair, wondering why you were the one who was led towards the road strewn with pain, or you can be grateful that you are strong enough to survive it.” ~ JD Stroube
Death and Taxes. Those are the truths of life. And while we celebrate life, and adjust to taxes, a real interesting part of my life as of late, has been trying to understand death in a positive light. So death…what happens? We have ceremonies and burials. We mourn. We wear black. We cry. We console. We have a hard time communicating. We lean on others. We lean on no one. We drown our sorrows in various vices. But one thing we don’t do is really talk about it – the D word. But why? I’ve come to understand that we fear it. We’re so afraid to die, or have our family and friends die, that we chose never to talk about the end until we are forced to. Well, I refuse to do that. It’s one of the only truths of life, dammit! And I believe it’s time to understand death better…and perhaps figure out a better way to watch our parents die and then figure out how to live on more meaningfully.
But alas, I can only speak about my own journey in trying to live through my mothers death.
“I am the captain of my own ship,” my mother used to tell me while we were in Room 204. Too bad we weren’t on a Hinckley. Instead we were in the hospital.
It was February 2014. And for ten days and ten nights I slept next to her hospital bed on a cot that left my back constantly aching. But see, we weren’t supposed to be there. We were supposed to be at her happy place, on the island of Eleuthera. We were supposed to be sipping rum runners at Tippy’s and taking dips in the turquoise water and catching our own fish to cook for dinner. We were supposed to be celebrating the end of her radiation treatment. Cheers-ing to her good health and happiness over buzzed up lunches, getting bronzed at the beach and letting the sun reenergize us after this brutal winter. But now the only thing getting dark is the bags under our eyes. The only sunshine we see comes from a window that overlooks another building, and we only see sunlight from 1pm until 2pm. We’re not in bathing suits; hell, she’s in a johnny…and there sure ain’t no bartender in sight.
This Eleuthera trip was the one the doctor told us, the month before, that we MUST take. “I don’t like the sound of that,” my boyfriend had said. And neither did I. Sounded like this was going to be the last trip. Like this was our grand finale. And it was…and we didn’t even get to take it. And now we’re in the hospital, where I often felt everyone else was making all the decisions for us. Time for your shots, Ruth. No solid food for the next three hours, Ruth. You have an MRI at 3pm, Ruth. And Ruth, we’re going to put a camera on a tube up your nose that will eventually land in your stomach so we can see what’s going on down there. She would try to smile at the nurses and do as she was told. But there were never any options. This left me feeling helpless on so many levels.
See, my mother had something called Leiomyosarcoma. This rare cancer is found on smooth muscle. Know when your body is covered in goosebumps? Well, goosebumps occur wherever we have smooth muscle. And since smooth muscle can be found almost everywhere where there are blood vessels, my mother’s cancer could quite literally be found anywhere and everywhere. Basically, she could never escape it. No matter how hard she and her doctors had tried. “The exact cause of Leiomyosarcoma is unknown,” says Wikipedia. “Improve the quality of life for patients until a cure is found.” Life quality? Please. We’re stuck in a damn hospital. If I eat Au Bon Pain one more time, I’m going to scream. I was running out of patience. I didn’t even know what life quality was anymore.
Yet my mother – oh, that angel of a woman – did what every mindful patient did.
She took control of what she could, came to peace with what she couldn’t, and then…she waited.
“I feel like I’m not doing anything right,” my stepfather said in between heavy breaths and heart wrenching sobs.
But that was the thing…there was no right. No step-by-step guide that gives us instructions on how to help someone die gracefully or, even more challenging, how to make dying easy. It was all grey. And it will be for a while. There’s no “Death for Dummies” book – trust me, I looked. There’s no black and white way to help someone head to the other side. She passed. You lost her. She departed. She died. Whatever you want to call it, there’s the BC (Before Cancer) and the AD (After Death)…but there’s a really interesting grey time that I’ll call the CD (Currently Dying). And yes, this is the hardest part because it’s purgatory…the in-between life and death space that drives you mad and sad and makes you look back with regret and look forward with resentment at everyone and everything.
This grey time/space is often the hardest part of someone’s death, and also the biggest gift. A time when you’re able to treasure every day together, yet every day you may cherish small glimpses of punching your family members in the face. There is little control. Every day is a roller coaster, heading straight off the tracks. Some of the best minutes are followed by some of the darkest hours. But our parents die…at some point they all will. This ain’t the end, and the good news is that no one stays in purgatory forever — it’s just a pitstop…not a final destination. So I say embrace the grey. It is when you recognize the importance of treating your mother with absolutely nothing but pure love, all while figuring out how to cherish every uncomfortable moment together.
THE COURAGE & THE STRENGTH
“What you don’t realize is this is a gift,” my childhood best friend said to me over steamed milk and smoothies. “You will have no idea how much stronger you will be after all this is done.”
And I knew she was right. She had to be. Her mom had died from cancer just three years before. From what she had told me, my mother was now going through the exact same thing as hers did. We were becoming death sisters.
But my mom, she was one hellova fighter. One brave, brave soul. She spent more time in hospitals than most people could ever begin to comprehend. Her advice on cancer? “Surgery is the way to go. Whatever you can take out, take out. Radiation has worse side effects than chemo. Chemo definitely extended my life. Hair loss is no fun but you get used to it.” She never lost her sunny spirit. She was honest and realistic and optimistic and a ray of sunshine to all she met. But after four surgeries, nine months of chemotherapy, and two rounds of radiation, she had had enough. All her bravery couldn’t make up for the fact that that the dreadful cancer had reached her abdomen. She kept talking about courage and strength throughout her time in the hospital, even when we met with a priest. “I’m counting my blessings and I’ll continue to do that,” she told him. “I have a ton to be grateful for. I’m 54 and that’s a pretty nice life.” When it comes to end of life she said, “I don’t want to be in a lot of pain…but that’s on everyone’s list.” And then she looked away from him and back at us and said, “I would like you to help me with a good prayer – a big one – about courage. Courage and strength.” So he said some words and we prayed for her. For her continued courage. For her to have more strength.
But hindsight is always 20/20.
At the time, I thought we were praying for her. Funny, years later, I found this quote in my mom’s journal: “Courage is fear that has said its prayers and decided to go forward anyway.” What I now realize is that all those prayers, all the courage, and the strength she asked for…? Those, my friends, were for us.
“I want to go as gently as possible.”
Cancer gives the feeling of having absolutely no control. Mom decided in the end that she’d control her own exit. But she is sad. She cries and I don’t. I can’t. I am trying so hard to be strong that my tear ducts have crapped out on me. Everything feels like it’s flashing before my eyes. It becomes easy to lose sight. Mom’s losing her battle to cancer, and we’re continuing to battle with each other. We engage in a constant struggle of strong personalities – I can do that and she can’t do that – daughters and mothers and death and sadness. It’s heavy.
I reflect on my ten days in the hospital and what I’ve watched. Needle after needle in her arm, a tube in the nose to her stomach, more vomit out of one person’s mouth than I ever knew could exist, an edema in her rear, a port in her chest, and now a peg in her stomach. ENOUGH. Mom’s coloring and sense of feistiness are there. “I’m not going to beat around the bush, I want out.” And of course she did. It was a bad dream, as we continued to wake up right back where we started. At the time, I didn’t know what she meant. Out of the hospital? Out of this life? Out of this body? This is no way to live. It’s time to go home. She hasn’t given up. She hasn’t given in. We just have very little left to give.
And then there was the trouble with Dr. Ryder. “I feel like she was telling me there was no hope,” Mom said. But she wasn’t. Dr. Ryder was saying that simply being in the hospital creates fear and anxiety, and that mom needed to leave this hospital behind. “The fact of the matter is your mother does not have much more time to live,” Dr. Ryder told my sister and me in the hallway one day. “And she’s already spent enough time in this hospital. It’s time to get her home.” Her honesty was beyond brutal, but for the first time since I’d met her, I agreed with her. Life was moving at a snail’s pace and yet time was running out.
The day my mother told me she wanted to enter hospice, I developed Coxsackie Virus thanks to my niece Ava. It’s something that babies and toddlers get but rare in adults. This truly strange coincidence led me away from my ailing mother and awkwardly into the home of my father. That rash and that “day off” was the best thing that happened to me. See, when someone you love is dying, it becomes physically, mentally, and especially emotionally draining. Weeks go by in what feels like both an hour and a year, and you truly begin to lose sight of your life and livelihood. It’s important to take care of oneself…so we can better take care of others. Even if it’s just one day off. We often feel like our body’s presence is enough, when a clear mind is by far the most important thing to have with you. So after ten straight nights in the hospital, the hardest thing to do, during turmoil and family angst and awkward sibling spats and fears of the inevitable unknown, was to leave. To clear my head. To let my dad and stepmom take care of me for a night. A good 24 hours of sleep and some time to reflect on what’s really important. And I realized, that the greatest gift to give a dying parent is one’s whole self.
Make sure you tell her it’s ok to let go,” our hospice nurse Linda told me that Monday. “These are the most important words for her to hear.”
April 7th. My mother was what Linda called “actively dying,” and I loathed Linda that day. Why would she say that? I will not tell my mom that, I thought, but thank you for the shitty advice, Linda. It’s not okay to go, mom, ‘cause I can’t live without you. You are the most important person in my life, Ruth Page Morgan, and I can’t release you. I am sorry, I know you are in pain, but you truly may not go. Oh mom, I am so angry that you stopped talking yesterday, and I’m so sorry your body has been put through this hell. I hate that you have a diaper on right now, yet I cringe at the thought that the cancer has blocked your bowels and you have not been able to go to the bathroom in weeks. I’m so sorry that you can’t eat anymore and that you’ve lost the ability to close your jaw. Mom, I’m so sad that it’s all ending. Momma, I’m mostly afraid that when you die, much of me will too. This really is the worst. Okay. This too shall pass. Okay. Deep breath. “You can let go,” I whispered into her ear, my tears soaking the side of her yellowed cheek. “It’s okay to let go mom, promise.” And as I walked out of her room, with those words said, I felt like a bull had just charged out of my chest.
April 8th. Something’s different, but everything seems the same. We have a very civilized morning. Just how she liked to start her days. It’s completely grey outside and reminds me of Nantucket. We make the coffee. Steve goes to the dump. She had told us that when life’s not normal, try to do normal things. I try to choke down some cereal. Mom gets a changing from the nurse Cait. Mom’s wearing a yellow oversized tee shirt and black yoga pants. Cait even cut the diaper off, and made it into a lining. This is good, I think. Mom would not have wanted to die with a diaper on. We set up photos on her hospice bed table, including everyone in the family. But now it’s just the three of us here. Small, Medium, and Large. The day she entered hospice, she had told us the best thing she ever did was have us three girls. We play Name that Tune. Higher Love by Steve Winwood. Over the Hills and Far Away by Led Zeppelin. Everyday People by Sly and the Family Stone. We find something to laugh about. I read her amazing Larry’s poem and put on her prayer beads. Christina quietly sings “You Are My Sunshine,” as Sanna curls up in the bed with mom. Her breathing gets more sporadic, like she’s gasping for air after being stuck under water. We look at each other. Alarmed. Linda told us about this. It means we’re coming to the end. We call Steve and anxiously wait for him to come back. “Most patients make up their mind on when they want to go,” Linda had said. We hear his truck coming up the driveway. He rushes in. We three sit on the bed. Steve on the chair next to her hospice bed, hand in hand, ring to ring. I start to believe that every breath is her last. When another one comes, I am both pleased and panicked. And then…out of nowhere, the sun pops out. A bright stream of light enters the room. Mom opens her eyes, breathes in once more…and she exits.… Just as she had wanted, as gently as possible. The best and worst moment of my life. When the ray of sunshine came into the room right before she departed, I mean how could I not believe in something higher? And then, like everything else for the next year, the sky went back to grey.
“Don’t worry…it’s not anger, it’s grief,” a man we referred to as WonderPhil told me. “And it takes a little while to learn the difference.”
Everyone mourns differently. Everyone grieves in their own weird way. There is no real right or wrong way to do it. Which is why it is often so unbearable. This will be the hardest part…the “after” — mostly because it will never stop hurting. As Linda told us, “death is difficult at best.” My mother’s death does not surprise me…sure I’m sad, but I felt like she had weaned us off her for months. And I had prepared myself for the inevitable. So now…I’m just empty. Just feeling shitty. Can’t sleep. Can’t cry. Don’t really want to be with friends and don’t really want to be alone. I’m numb and finding ways to get numb-er. I can’t shake the anger from my bones. The weeks that follow are a blur. Emotions came and went, and tears flowed during some of the least likely and most uncomfortable moments. I read her obituary aloud to my friends with a sense of pride, but by the end, I awkwardly broke down in a horrible “did that really happen?” moment. I miss her. I wish I could call her and just be soothed by her gentle words during this crossroads. But she’s not able to do that anymore. I have to find a new way to talk to her. I just can’t figure out what it is.
And out of nowhere, her death continually comes back and slaps me in the face…like when JetBlue asked for my emergency contact and I couldn’t put down her name. Like when a childhood friend asked how my mom was and I had to tell him that she’d died. Like when I find a letter of hers that says how she’s so proud of me and wants me to know that she’s always here for me. But you’re not anymore, I think angrily. It’s moments like that when I realize that this is going to continue to sting for a long time. When everyone wants to be there for you but starts with “I have no idea what you’re going through,” or “I can’t imagine how you’re feeling right now,” these are the conversations that make me not want to talk to anyone. Everyone tries, but if you don’t have any idea what I’m going through, I’m not ready to talk to you either. How long am I going to feel like this? I question everything and mostly do it after a bottle of red wine at night. I’ve lost myself. And to be honest, I don’t want to find myself either. Grief can do that to you.
But remember…for better or for worse, everything in life is temporary. Even grief.
THE MERRY GO ROUND
“It’s like a merry-go-round. You’ve stepped off, it keeps going round, and you gotta figure out how to hop back on.”
My friend Don told me that over a glass of Cabernet one night while I was bartending. His parents had passed away and he understood what I was going through. It was really only with people like him that I could be candid about my grief. See, a year later, I had no idea how hard getting back on that merry-go-round would be. After a parent dies, it’s such a bizarre blend of emotions. Everyone is so focused on you and your well-being for the first few weeks. But after the service is over and the headstone is up, and the sympathy cards change back to bills in your PO box, and everyone seems to just get back to their lives, it is at this point when your grief begins to either help or hinder you. It’s a perspective game. You can pretend you’re okay. But you’re not. We all know it.
After that year of firsts, it is in the second year when it becomes more important than ever to surround yourself with people who are going to lift you up. That merry-go-round is always spinning. And you can’t just jump up and get on. You need some hands. You need someone to reach down and give you a boost. You need to be able to open yourself up to the fact that life goes on. And you need to notice that after a while, it’s no fun just staring at everyone on those horses, bobbing up and down, while you’re on those lonely sidelines, just watching the world spin by.
Find your person who loves you more than anything. Who wants to see you survive and thrive. Hold on to that person. Trust in the person. And when you’re ready, and she puts her arm out…grab it and jump back up.
I promise, one day you’ll know exactly what I’m talking about. Until then…enjoy the ride.
Something changed within me three years after my mom’s death. Yes, it took a thousand days, and yes, it took some serious soul searching and some real low lows. But I’ve come to terms with the journey of my mom’s death in a new peaceful light. I now like to believe that my mother was like a caterpillar on this earth. She was beautiful to many, but could be perceived as ordinary to the regular eye. (And if we’re going by a Google search, she almost didn’t exist.) Like many normal folk, she lived through each day and did what she could to get by. She had a nice, quiet life filled with calm moments and good laughs, and her favorite hour was sipping a G&T in an Adirondack chair on the dock of her pond. But slowly, over the course of twelve years, cancers developed inside her. They began in her uterus…and she cheated death with radiation and got another eight years. But like a bad dream, the dreaded disease came back and attached itself to her again. For three more years, she was endlessly poked and prodded. With constant medical attention, she was able to live…but alas, was it even a life? Eventually cancer encompassed her and paralyzed her. Cancer transformed itself into a cocoon that eventually just wrapped her all up, ’til my mother was nowhere to be seen. Then one April day, I looked down and she wasn’t even there anymore. She was completely grey and a mere shell of herself. Then she was gone and I thought the only thing I was left with was grief.
But the fascinating part was I didn’t realize that the cancer cocoon wasn’t the end.
No…she was magically evolving right in front of our eyes. And one day, she came back…as a yellow butterfly. I see her now, in the strangest of places and I know it’s her – a symbol of hope and soul. She hadn’t left us. She had just morphed into something so much more free. Something that wasn’t bogged down by a tumor-ridden body. Something that didn’t live from doctor appointment to doctor appointment. Something that didn’t need to get “checked” every three months…
When I had asked her, right before she died, what her favorite journey had been, she had said “the one on which I am about to embark.” Oh, how silly for me to think of her death as the end! She knew it all along…this Madame Butterfly was just beginning to transform…en route to the great unknown, the most magnificent journey of all.
So when it comes down to a parent’s death… what can I tell you? That it’s going to be easy? No, but it will get easier. That you’re going to get over it? Nope, I’m sorry, but you never will. Will you have days where you can smile thinking about her again? Oh, yes, those will come. Will you ever feel normal? Well, honestly, what the hell did that mean before anyway? And what was this gift? It was not a present to open after her death.
But I’ll tell you, as I was told:
You may not realize it now. And you definitely won’t recognize it while it’s happening. But someday, I promise you, you will look at the journey of death as a gift. You experienced this, so you would never look at the world with the same eyes again. You endured this hell because you need to grow strong enough to get to the other side.
So keep going…because that merry-go-round is filled with great people. Because you are your mother’s legacy. You will carry her voice in your heart, you will watch her spirit live on in your children, and you will never ever lose her again… for now she lives within you.
That is the gift.