This is one of those Christmas seasons destined to be discussed in therapy. Maybe by me and my life partner Lori, but undoubtedly by our four year old son Ben.
Tonight I’m scheduled to leave town on an overnight flight without knowing a return date. My shuttle doesn’t leave for another two hours and we consider picking up a tree so we can do at least one thing as a family this year. While I lean towards cynicism during the holidays, Lori has a lifetime of good Christmas memories so she always insists on creating a special season. It’s no different this year, even while we’re dealing with the reality that my sister Beth will probably die within days or weeks.
We finally decide to get a tree tonight. We can easily put it up with time to spare to get me to the shuttle.
The tree lot is empty—who buys a Christmas tree on the third of December? In Arizona, where under the best of desert circumstances the poor thing can hold onto its needles for a matter of days, three weeks out is ridiculous. Still, we have our pick: Douglas, Fraser, Noble; whose idea was it to create so many kinds? After narrowing it down to the two best picks we let Ben have the final say. Noble Fir it is.
Lori stresses out over the stand. As Ben and I watch a guy weave a wreath out of branches she is arguing with the other guy to leave the stand on the tree, we’ll just pay for it and take it as is.
“Don’t you know how hard it is to get that on straight?” she says. “People end up in divorce court over those stupid stands. Just leave it on and let it stick out the back of the car.” But no, this is some kind of liability problem. The guy assures her it will be no trouble.
“Look, see?” he says, “There’s already a hole drilled. You’ll just have to tap it with a hammer when you get it home. Just tap it, see? Like this. Just tap.” Now he’s talking to her like she’s mentally challenged and she’s getting more steamed so I bundle Ben into his car seat and try to stay cheerful about it all.
We get home and drag the tree out of the back of the SUV. I hold onto the trunk while Lori begins to tap on the bottom of the stand with a hammer. She taps. She taps some more. Then she is pounding away for all she’s worth, muttering under her breath as she goes, “Just tap it, he says! Who is he kidding? Why do I listen to those guys? Tap!” Finally it’s in and we carry our beautiful tree into the living room and place it, just so, in front of the window next to the fireplace. Standing back I pick up Ben so we can all enjoy it together before we leave for my shuttle. And the thing is leaning like the tower of Pisa.
Lori is going to pop a gasket and I’m not much better off. I put Ben down on the couch and grab the top of the tree, trying to pull it into position. “I can’t believe it. What is wrong with that guy? We paid for that stupid stand!”
“I don’t know why I don’t listen to myself with these things. I told him… just tap, he says, just tap. And I fall for it! This is ridiculous. We’re taking it back. Michelle, pick it up and bring it back to the car. I’m getting my keys and we’re leaving. Come on.”
Grabbing the hapless tree trunk by both hands I drag it back outside and begin to stuff it up the rear end of the Explorer. It isn’t an easy fit and Lori comes out to help. As we struggle, her pulling from the front and me pushing from the back, I hear something. We stop to listen and there it is again. It’s the distinct sound of our son, crying in the living room where we left him. We both drop the tree and dash back inside where we find Ben in the corner of the couch, sobbing his little heart out. Lori gets to him first and folds him into a bear hug which I join awkwardly.
“Ben, it’s OK. We’re not taking it, we’re just getting it fixed.” I listen to the both of us try to console him and know that our son thinks we’re Grinching his Christmas tree. “Oh Cindy Lou Who, Santa isn’t taking your Christmas tree…” Ben is ruined for life. He sobs until the tree is back where we put it in the first place. His cries turn to snuffles and eventually he smiles.
Many hours later I call home from the Phoenix airport. In the end the tree was straightened out with the help of strategically placed magazines, and Ben went to sleep with a smile on his face. Lori and I aren’t doing quite as well as we realize the enormity of a holiday season with a small happy child who can’t even begin to understand the concept of terminal cancer.
In the airport store there are racks of magazines with great advice for surviving the holidays without gaining weight or fighting with your in-laws or ruining the turkey. How to buy the perfect gift, decorate a storybook house, throw the best party on the block. But none of them describe how to get through the season while dealing with the loss of someone you love. No one shows us how to celebrate Christmas, with its promise of gifts and joy and happiness, while facing the fact that your sister will never see her kids finish college and get married and give her grandchildren. Nobody tells us how to explain your grief to a little boy, or to reconcile this loss in the middle of so many other people who are shopping and caroling and decorating and cheering for their football team.
Three years ago, my oldest sister Beth was diagnosed with Stage Four metastatic breast cancer. By the time they found the cancer it was in her liver, her bones, practically everywhere. At that point her system was failing on her and we didn’t expect her to survive that holiday season—she was diagnosed at Thanksgiving. Flying in the face of all her doctor’s predictions, for three years she has survived more chemotherapy and its side effects, more hospital stays, and more health crises than any one person should ever have to face. She has managed to have many good times in the midst of it all, and has shown more courage, faith and hope than I would have believed possible.
My family has rallied in the face of this event, the first time we’ve had to deal with such a serious health issue in one of our own. Until now, all seven siblings—seven sisters and one brother—have been a healthy bunch. Of course we’ve had crises and health problems but nothing like a terminal cancer diagnosis. The whole thing is made only more ironic by the fact that both my father and my brother are oncologists, and there are three more doctors among us as well. Doctors are supposed to treat sickness, not live with it.
Since Beth’s diagnosis we have gotten together as a family each Christmas season, with all spouses and kids in tow for the first time in many years. At some point during each gathering we looked at each other and thought it would be our last. All of us have come together a little early this year because the most recent news is not good. On the day after Thanksgiving Beth got chemotherapy for the first time in awhile, since her system hadn’t been able to tolerate it. A few days later she took a fall down the stairs in her basement. In addition to a battered forehead and mouth, she is still disoriented and now it looks like her liver is beginning to fail.
That fall down the steps turns out to be a final straw for Beth, and she and her husband have reluctantly agreed that it is time to stop treatment. They have two kids, a son and a daughter, both in their late teens. During the whole time Beth has been going through treatment she has protected her kids from the worst of it. When others advised her that maybe she should tell them more, she refused. Now I know she was right. Those two kids have been able to have somewhat of a normal high school experience, even while their mom struggled with getting out of bed some days.
But now everything needs to be discussed. On Friday our entire family meets with Beth’s Hospice team. We learn about services available, how to access them, what we can expect from Beth’s team. Beth’s seventeen year old daughter Marie brings a friend for support and her friend cries while Marie can’t. Nineteen year old Ed seems stunned, which is pretty much how we all look. Still, we make plans for the immediate future. We talk about routines, cooking, cleaning, dog care. We talk about cars, transportation, home medical supplies. We talk about the phone.
Beth has been a nurse for twenty-five years. She has never moved away from Madison and has friends here that date back to grade school. She is well loved by many, and all of them want to help, to tell Beth how much they care and to ask how they can show it. You’d think that would be a nice thing and in a way it is.
Still, the phone calls are now out of control and we set up a system to lessen the intrusion. Beth herself leaves the outgoing message, thanking people and asking them to please leave a name and number. We each agree to check messages, screen them, and return those we can so Beth doesn’t have to do it all.
One day Beth and I are alone together and she tells me her thoughts about the phone, about her life, about dying. “You know, I’ve spent my whole life trying to help others. That’s not unique, a lot of people do. But in my case I’ve been able to find out that I have made a difference. Since I got sick, people have found out. And they’ve called me, to tell me how sorry they are. Patients, students, parents of my kids’ friends, all sad and all wanting to help.
“But they’ve also called to let me know how I helped them, how I made a difference in their lives. Do you know what a gift that is? So many people go through life worried that all their work was for nothing. How lucky am I to have the chance to find out that my life was not wasted, that my work did make a difference.” I struggle to hide my tears as I give her bony shoulders a careful hug. Afraid she’ll break from my touch, I let go reluctantly.
Eventually, this trip to Madison lasts two weeks—far longer than I have ever been away from my child. Beth rallies, and it looks like she may stick around for awhile so I have to leave. But when my plane takes off, bound for Arizona and my own family I have no return ticket. I cry the whole flight home, knowing I may never see Beth again.
Lori and I have plans to go to California for Christmas. Her mom died five years ago. Of cancer. Of course. Lori herself is a breast cancer survivor of over twelve years, and while we rejoice in her survival we’ve come to hate the C-word and everything associated with it. Still, this year we have agreed to spend the holidays with her family. Her dad is remarried and Lori hasn’t spent the holidays with him since she lost her mom. She’s worried that she may not have many chances left with him and as much as I hate the thought of being even further away from Beth than I am in Tucson, this trip to Lori’s family it is the right thing.
Ben is excited to have both his moms around again, and we talk about how we’re going to the ocean for Christmas. He asks how Santa will find us if we’re not home, and doesn’t seem quite convinced when I tell him Santa’s magic is much more powerful than a simple little plane ride. He looks at me skeptically. “We still need to put cookies out before we leave. What if he comes here and there are no cookies for him?” I agree, and he’s satisfied for now.
When I’ve been in Tucson only three days another phone call comes in from Madison. Beth is being taken by ambulance to the residential Hospice center and has only days to live. This news knocks us into a tailspin. During the two weeks I was gone Lori and Ben decorated the whole house in holiday colors and Santas, and she’s really been playing up our California plans to stay on the coast, visit the beach and hang out in the sun. He’s been excited about it, and flying out to the frigid Midwest to spend our days in a Hospice center is not a good substitute. We briefly consider splitting up but in the end our desire to be together along with the immediacy of Beth’s situation wins out. The next day all three of us board a plane for Madison.
When we get there, hours later than we expected, they’ve lost my luggage and Ben’s car seat. I’m frantic, thinking of minutes wasted while my sister might be gone. The car rental agent is kind and gives us a booster seat while I have a fit about the dozens of people in the line to report lost luggage. We leave without waiting, Ben wrapped in an extra coat of Lori’s. I drop Lori and Ben off at my sister Cathy’s house to sleep, then drive out to Hospice.
I spend the night in an overstuffed chair in the lobby of Hospice. My family is camped out all over the place, parents on sofas in the waiting room, one sister in a spare bed for families, another in the chair next to me, brother sitting on the floor. We don’t really have any reason to be there since Beth is asleep, husband beside her. Still we stay, hoping against hope that she’ll wake up and we can talk to her one last time. All night I doze off and wake up when someone walks by. At 2:30 a nurse brings blankets still warm from the dryer.
In the morning a frantic call comes in from Lori. Ben has a raging ear infection, hasn’t stopped crying for an hour, and no one else is there so she needs me to bring Tylenol. Beth still isn’t awake and I hate to leave but Ben needs something so I head out into the cold to bring it to him.
It’s like this for the entire next week. I juggle my duties as a mom with the time available to sit by the side of my sister while she wavers in and out of awareness of her surroundings.
Through it all there is no escaping the fact that it is Christmas. The Hospice center is decorated and every day there’s another visitor dressed as Santa Claus or a Teddy Bear, there to hand out cookies or candy or toys. They are well set up for kids and Ben comes with us every day to hang out and watch far too much TV. Between hospice visits we try to keep up the excitement of the holiday for him, taking him out at night to see the lights, enjoying the snow when it comes, watching Rudolph and Frosty and the Grinch (against my better judgment, with our own tree fiasco still fresh in my mind). Our families exchange gifts and on Christmas day we have dinner together. We say grace and add some words for Beth and for her family and for all of us and I hold back tears while trying to smile at my boy in the chair next to me with his little hand in mine.
It’s the morning of December 29th. My younger sister Lisa and I are at the gym, where we’ve spent many hours in the last ten days. All of us have been pursuing various activities to survive or escape our feelings. Working out, knitting, eating, drinking, watching TV, whatever it takes. This morning is no different, and we are doing a Bosu workout, some new exercise fad that’s really just a glorified step class. While trying to listen to the instructor, keep time with loud obnoxious music and avoid twisting my ankle on a wobbly Bosu ball, I vaguely hear something over the loudspeaker. “Will Patrice and Michelle Pitot please come to the main desk. Patrice and Michelle Pitot.”
This announcement clearly does not apply to me. I’m not here with Patrice, I’m here with Lisa. Apparently, at crucial moments in life our intellect does nothing to help us out. How many Michelle Pitots do you think there are in this particular gym at this particular moment in Madison, Wisconsin?
I step off the Bosu ball and ask Lisa, did you hear that? Her brain has left the building along with mine and she agrees that the announcement was not for us. I go to the front desk anyway, focused on my relief that I can walk easily on the solid floor. Sure enough, the woman at the desk asks me if I’m Beth’s sister and tells me we should go to Hospice, it’s bad. Starting to cry immediately, running blindly across the floor to grab Lisa as she emerges from the Bosu room, racing around treadmills and stairclimbers, we look for our other sister Patrice who has to be here somewhere or why would they have announced her name? A staffperson sees us and figures it out, calling to me from somewhere upstairs, “Patrice already left.”
We were the last in the family to hear the news and when Lisa and I finally get to Hospice everyone is in Beth’s room. She is struggling to breathe. That horrible sound the medical people call the “death rattle.” I sit by the bed near Beth’s foot. Next to me is my sister Jeanne, tears streaming down her cheeks. She turns to me and says, “I’ve never heard this before, I didn’t know it would be like this, it’s terrible.” My tears have started again and I don’t say it but I think, I have heard this before and I hate it. Lori’s mom died of cancer a few years ago and she made this sound for hours before she died, while we sat and held her hands.
Although she is making such a heart-wrenching sound, Beth is hardly more than a small mound under the sheet on the bed. In the last few days she’s been comatose, her tiny body has shrunk even more, and curled into itself. It’s almost like Beth has returned to the fetal position and as I struggle to watch her through my tears I hope this position brings her some comfort that even the morphine drip can’t provide. We all stand and sit as close to her bed as possible, my siblings and some their spouses and my parents. My devastated parents, who have to watch their first-born daughter leave them far too soon. Each of us has a hand on the bed, holding some part of Beth, wanting to keep a connection as long as possible. Our silence as we join together is broken only by Beth’s tortured breathing and our own muted sounds of grief.
Beth dies a few minutes later, surrounded by the family who loves her. She takes one last wracking breath and lets it out. My mom utters a little moan and she says “Oh, Beth,” and we all know what she means. Beth held on until she knew she had brought us all together. And even though I can’t see anything through my tears and my hand on the shape of Beth’s foot feels frozen and it’s hard to comprehend what has just happened, I’m so damn grateful that she waited, because I know everyone is here for Beth and for each other.
By the time I come back to Arizona with Ben, Lori has been home a few days already. All signs of Christmas are gone. I’m sad, sad that the holiday season is over, sad we never really got to have a holiday, sad it’s over and sad it ever happened this year at all. No surprise—surely I’ll feel sad for a long time, and sometimes it will make sense to me and sometimes it will seem to have nothing to do with anything. Still, another awareness is beginning to surface as well.
Beth didn’t want to die on Christmas day. A devout Catholic and a great wife and mother, she did not want that day marred forever in the minds of her husband and kids. And while she may not have been ready to face the new year, at least she got that wish. But without a doubt Christmas in the future will always bring back memories of this one.
Back in Madison, before they came to take Beth away I had the chance to sit with her for a few more minutes. For the first time in days no one else was in her room but I didn’t want to leave her alone, even though she was already gone. With my hand stroking her tiny forearm, I looked out the window and saw a bunch of dead trees. No leaves, no green, no sign of life at all. How appropriate for her to leave us now, I thought bitterly. The slate gray sky was a perfect reflection of my feelings.
Part of a poem by Auden came to me then: The stars are not wanted now, put out every one. Pack up the moon and dismantle the sun. Pour away the ocean and sweep up the wood. For nothing now can ever come to any good.
Just then a tiny bird fluttered up to the feeder outside the window and she looked right at me. “See?” she seemed to say, “I’m here. I’m alive. And there are lots more where I come from.” I smiled even as I cried because the little bird reminded me that the seemingly endless winter in Wisconsin is just temporary.
So the gift that Beth gave us by dying so close to Christmas is that I will never again be able to celebrate it just on the surface. I will never again be able to think that what is really important is getting the perfect Christmas tree and standing it up straight and making sure the lights are placed in perfect rings all around. I will never again be able to see only the presents and the cooking and the shopping madness and the bills. Instead I’ll always remember, as I think of my sister Beth, that the season offers us the chance to reflect on all we have been given and even all we have lost. And to feel hope for springtime, that we’ll go on to a new year with everything we learned from the year before. And most importantly, that our real job is to make a difference in the world. Whether or not we are lucky enough to be told what that difference is, we should still work always to make it so.