By Kimberley Balkus, TCF volunteer and advocate
2,403 days.
The number of days that my mom, Geri Keegan, lived with cholangiocarcinoma. She was given one year to live and every additional day we had with her was an absolute blessing.
To most, including many at the Massachusetts General Hospital (MGH), she was the lady with green hair. She proudly wore a green streak in her hair to raise awareness of cholangiocarcinoma. She considered herself a “green warrior” because green was the color of the ribbon for her cancer. To my nieces, she was famous because she was in a book, on the internet, and “everyone” at MGH knew her. To me, she was just my mom. She was my best friend.
On March 27, 2020, my mom wasn’t ok. On March 27, 2020, my mom died. As I write this I struggle to understand, believe, or process that statement. My mom died. She’s gone; she’s really gone. Forever. When you lose a loved one, especially one you cared for like I did, one you call your best friend, certainly you get to mourn them with the support of the ones you love. They’ll visit you, hug you, and feed you. They’ll be there to sit by you and hold your hand while you cry. Right? That’s what happens. I know that’s what happens. I’ve been there. I’ve done that myself for friends and family who have lost loved ones. That’s what happens, isn’t it? Not when your mom dies during a global pandemic. Never could I have imagined my mom would pass away during a global pandemic. Ever.
She had been in the hospital for nearly two months. It was her eleventh hospitalization in the last year and a half. As a result of this long hospitalization, she grew sadder by the day that she was spending more time with strangers in the hospital than with those she loved. On March 14, 2020, when she had recovered enough to be discharged, she painstakingly chose to go home under hospice care.
We were so excited to spend time together with those we love. But that didn’t happen. That was the start of this pandemic in Massachusetts. No one could come over and visit. My mom was home for only one week before things went awry. She achieved her goal of going home and then her body started to fail. We called the hospice nurse who helped our family keep my mom comfortable until she passed away in the home that she loved so much being cared for by her family.
“This wasn’t how it was supposed to be.”
When we met with the funeral director, we sat far away from each other on folding chairs around a card table afraid to touch anyone or anything. We thought it would be so easy to plan her funeral. You see, even though I could never think about my mom dying she did. She spoke about dying often. So much so that I think it calmed her. It calmed her to talk about it with us to lighten the mood, to help us laugh and come to terms with it before it happened. I couldn’t do it. How could I live without her? She wanted to meet with the funeral director and asked us all to join her. So we did, almost exactly one year to the day before she passed away. When she met with him, she told him her wishes for her wake and her funeral.
So here we were, meeting with the same funeral director one year later, now that she had passed away. This should be easy, right? She already made the hard decisions. She had even picked out the music to be played at her funeral. However, we had no idea we would be meeting with him during a global pandemic. During this meeting, we learned the church she wanted to have her funeral in was closed. We learned state guidelines had just been issued stating that no more than ten people at a time were allowed in the funeral home or at the burial. Just like that, there would be no funeral. There would be no eulogy, music or flowers. The services now had to be private. This wasn’t how it was supposed to be. My mom wanted a wake and a funeral at her church. I wanted my mom to have the wake and funeral she so deserved. Full of family and friends who loved her, who willingly gathered, and stood in a long line that wrapped outside and around the corner. Family and friends standing in that long line just to hug us, say they were sorry and tell us how much they would miss our most amazing mother. That just wasn’t meant to be.
On April Fool’s Day, the day of my mom’s services, I put on a mask and gloves and left for the funeral home. Side note, my mom had an amazing sense of humor. I know she loved being buried on April Fool’s Day. I supplied those few special loved ones that were allowed to attend the services with personal protective equipment. Wait, what? First, I lost my mom, my best friend. Now, I’m wearing a mask and gloves at my mom’s services? Afraid to touch her, kiss her, and say my final goodbye for fear I’ll pick up someone else’s germs? What is happening? Shouldn’t I be allowed to just grieve? I must be dreaming! Right?! But no, no I wasn’t dreaming. This was real. We had just been through the most traumatic time our of lives. Yet, as traumatic as it was, as much as we were grieving there were no hugs. There were no kisses, no handshakes, no arms around our shoulders, no touching in any way. There were no pictures or story boards or projectors on with pictures scrolling of all our amazing loving memories of our mom. There was no receiving line. There were no guests to greet us to share their wonderful stories of their time spent with our mom and telling us how much they cherished her. We merely got to say goodbye.
When the day was done, we had one hour to love on our mom and say goodbye. Then our little five car procession followed the hearse past her childhood home, past the church we should have been stopping at but weren’t and onto the cemetery. Once at the cemetery, three prayers were read then we laid white roses on her casket. The roses one of us bought at a grocery store because florists were closed. The funeral director turned to my sister and said, “Should I tell everyone where to go afterwards, are you having a meal together?” She had to say, “No.” No, we will just thank the few guests for coming and tell them when the world recovers, we will have a mass to celebrate her life. We will someday have that mass she wanted. The mass we wanted, the mass we so desperately needed. The mass that will allow us to grieve with family and friends and allow those grieving her loss with us from afar to say their proper goodbyes and honor this incredible lady and the legacy she left behind.
“How do I grieve? How do I heal or move on?”
In the days following her death, the doorbell would ring but by the time I got to the door all I found were packages. There were packages left on my steps and I saw the delivery trucks driving away. Friends would leave food and flowers on the steps and texted me when they were back in their car telling me to open the door. I was lucky if I made it to the door in time to catch a wave as they drove away. Some friends, I never even saw. There was no human contact at all. No words spoken. Just texts, waves, or items left as if they had magically appeared. All kind gestures I appreciated so much. However, when you envision losing someone, you envision being surrounded by those you love, offering words of comfort and helping you care for yourself. I know these meals, plants, flowers and treats were to show me how much I was loved. I could feel the love but I needed to feel the human touch and to have face-to-face contact. You learn in a time of such great sadness how much you crave human contact. How much you took a hug, a gentle touch on your hand or shoulder, someone to laugh and cry with for granted. I would give anything for someone to knock on my door, come INSIDE my home and just sit with me.
Then, there were the cards. The sympathy cards. I couldn’t bring myself to open them so I piled them on my mom’s chair in the kitchen. Why not, right? She’s not sitting in her chair. My sister teased me about the placement of the cards. Did I put them on my mom’s chair because I thought if I piled them high enough they would turn into my mom? Maybe. My sister kept telling me to open the cards. She was sure they’d bring me comfort. I couldn’t imagine how that could be true. They were just cards. I needed to see people. I needed to talk to people. I needed a hug or a simple arm around my shoulders. I needed someone to sit with me and just be with me. But cards, nope I didn’t need those. Finally, about three weeks after my mom passed away, I opened the cards. I did enjoy reading them. I found it comforting to write down all the adjectives loved ones used to describe my mom. It helped me heal, a little.
If we didn’t get to have a wake or a funeral did she really die? Are we sure she’s gone? No one came to keep me company and take care of me while I grieved. So, she couldn’t have died, right? These are all the things people do for you or you do to heal and be comforted when you lose a loved one. How do I grieve? How do I heal or move on? Her bedroom remains untouched. Her bed is exactly as she left it. I walk by her room expecting to see her every single time. And now, my mind is playing tricks on me since I spend so much time alone. I forget she’s gone. I try to talk to her and then I remember, I can’t – she’s not here.
What I’ve learned is to be kind to yourself. Grief is hard when surrounded by loved ones. Grief is harder when you are all alone. In the absence of human contact, I have found much comfort in doing Facetime calls with friends, Zoom meetings with coworkers, joining bereavement groups through hospice, and talking to the therapist that I have known since adolescence.
I always told my mom that when she couldn’t share her story anymore that I would continue to tell her story. That’s exactly what I intend to do. She taught me and my sisters how to be strong, kind, loving, and compassionate human beings as she led by example. She also taught us how to live and give life your all every single day. Today though, I’m telling my story. I’m telling my story of grieving during the Coronavirus. I hope those that are grieving during this time find comfort knowing that they aren’t alone and maybe others will be more empathetic to those of us grieving at a time like no other. I will heal, one day at a time.