Michelle Eckland: In Her Own Words

“Ohana means family. Family means nobody gets left behind – or forgotten.”

– from the animated movie Lilo & Stitch.

A few years ago, “ohana” – for me – basically meant my mom, my dad and my brother. Since losing my mother to a rare form of cancer, “ohana” has come to mean much more.

As a child, I was constantly afraid that one day I would wake up and my mom would be dead. I remember in seventh grade waking up to my brother telling me that my mom was in the hospital yet again. She had multiple diseases that led to hospital visits, surgeries and numerous visits to the doctors.

In my junior year of high school, my fear of losing my mom was intensified. In April 2006, mom was diagnosed with stage 4 cholangiocarcinoma – a rare cancer of the bile ducts. The doctors told her that her cancer had a very poor prognosis and that she would probably live for about a year. They told her that she could try chemotherapy but that it probably wouldn’t shrink the size of her tumors. My mom started chemotherapy on September 11, 2006 – just two weeks into my senior year of high school.

Throughout the next six months, as my mom received chemotherapy, I watched her independence slowly diminish. First, she could no longer drive. After that, the cancer took away her balance, her memory, and everything that made my mom who she was. With each new development, my fear would increase.

Every morning, I would wake up and make sure that she was still here in my life, alive. Before school, I would go into her bedroom and give her a kiss on the cheek. She would wake up for a second, smile, say “I love you,” and then fall right back to sleep. I wanted to make sure that if my mom died while I was gone that she would know that I loved her – and that I would know that I kissed her right before I left.

Throughout all of this, I was trying to live my life as a high school senior. I applied to colleges, held numerous leadership positions at my high school, and worked part-time. Looking back, I now recognize how alone I felt. I didn’t have any friends who had a parent with cancer; I felt like no one understood what I was going through.

In March 2007, the doctors stopped my mom’s chemotherapy as it was no longer proving to be beneficial. But my mom held on long enough to see me graduate from high school, hear my graduation speech, and celebrate my 18th birthday with me.

My mom’s health really began to decline that summer. She slowly became more swollen and forgot how to perform daily functions. Worst of all, she had trouble remembering who I was.

On Aug. 2, 2007 – the day after her 50th birthday – I rode in the ambulance with my mom as we moved her to a nursing home. As tears streamed down her face, it suddenly hit me: my mom was never going to see my house again. Instead she was going to die in this nursing home where all of the patients appeared twice her age.

At 6:48 a.m. on August 8, I awoke to my father shaking me. He had just returned from my mom’s nursing home – and told me that mom had passed away 10 minutes before he arrived there.

At first, I did not believe him. I was hurt and angry because the hospice nurses were supposed to let us know when she was supposed to pass. They said that she had at least a few more weeks to live. I did not understand. I could not believe that I would never be able to hug my mom again or kiss her and tell her that I love her.

My mom’s funeral was my first funeral. I didn’t know what to expect. I didn’t know that the family went to the funeral home in the morning before the funeral mass. After we said our goodbyes at the funeral home, we sat in the limo and waited for them to roll my mom’s casket to where it would be placed in the hearse. I watched as these men slowly transported the casket from the church to the hearse, and I thought, “my mom can’t possibly be in there.”

I didn’t know that, after we arrived at the church, my dad, my brother, and I would have to walk behind the casket. As we walked down the aisle with my dad in the middle – one arm around me, the other around my brother – I remember realizing that “this is it, this is my family now.” My mom was in the casket that was slowly moving in front of me. She really was never coming back.

After my mom’s death, I did not know what to do with myself. I did not want to sit around and cry all day – mom would not want me to do that. However, everything I saw reminded me of her and how she was no longer here. I wanted just to curl up in a ball and hope that if I prayed hard enough that maybe she could come back.

I was told that I was supposed to grieve. I was not expected back at work, and I was leaving for college at Vanderbilt University in less than two weeks. I had not started my dorm shopping, and I wasn’t even sure if I wanted to go to school for the fall semester.

But one conversation kept playing back in my head.

Earlier that summer, my mom sat me down on the couch next to her. She told me that regardless of how she was doing, she wanted me to go to school on time, and that knowing that I was at school getting closer to my dream would put a smile on her face. My dad always tells me that my mom passed when she did because she wanted me to go to college more than anything.

So I knew what I had to do, but I did not know how I would be able to survive.

Move-in day at college amplified my loneliness and pain. Here I was, an 18-year-old girl who had just lost my mother, and while I was unpacking my things and trying to organize my room, some of the other girls (in the dorm) were complaining about how annoying their moms were and how they couldn’t wait for their moms to leave so that they could decorate their rooms the way they wanted to.

I felt so alone and had absolutely no idea how I was going to survive in this new environment 1,100 miles away from my family back home in Massachusetts.

A few days into the semester, I became an emotional wreck; it was right around the one-year anniversary of when my mom started chemo. I visited the counseling center at Vanderbilt and met with a therapist, who gave me a pamphlet on this place called Gilda’s Club – which is a support community for people with cancer and their families and friends.

I had never heard of the organization, and, honestly, I thought my therapist was a little crazy and trying to pawn me off on someone else. I thought, “if this was such a great organization why had I never heard of it” and “why was there not one in Massachusetts where there are some of the best hospitals in the country?”

I followed my therapist’s advice and one day went to a new member meeting at Gilda’s Club. At the time, there were no support groups that dealt with the loss of a parent, and I found it challenging to even get to the clubhouse. But, towards the end of my first semester, as I really started to struggle with my mom’s death, I learned about Gilda’s Gang – a program started by a Gilda’s Club member (Gail Addlestone, M.D.) who died of breast cancer in 2007. The “gang” combines volunteer fundraising with a 16-week course of fitness training, which culminates in the group participating in the Country Music Half Marathon, held each spring in Nashville.

I thought that it would be a great way to challenge myself and to meet other people who had been affected by cancer.

So in January 2008 I joined Gilda’s Gang and started training for the Country Music Half Marathon – having never run a mile in my life.

For the next 16 weeks, I would wake up at 6:15 a.m. every Saturday and walk over to Gilda’s Club to be ready for our 7 a.m. long runs. I remember during some of our runs how much I would struggle, and I would question why in the world I was running 10 miles at 7 a.m. on a Saturday morning. But then I would remember my mom, how strong she was and how she fought for so long.

When I crossed the finish line, I was nearly in tears. My mom would’ve never believed I ran one mile not to mention 13.1 miles. I had done it all for her and to raise money for Gilda’s Club, which had helped me so much throughout that stressful year.

I decided to participate in Gilda’s Gang again in 2009 to give back to this organization that was becoming a huge part of my life – and an extension of my family. I had another incredible experience with the team – even though my friends still think I’m crazy for waking up at 6:15 a.m., and my roommate doesn’t really appreciate it.

A couple of weeks after the 2009 half-marathon, I was in the glass-painting group (one of the best groups at Gilda’s that has some of the sweetest members in it) and there were several Gilda’s Gang participants in the room. As we talked about how much fun we had with the Saturday morning runs, how we loved getting to know other members of the Gang, and how much fun the actual half-marathon was, an older man – whom I had never met – came in. His name was Mo Mantus. I learned he had been training for a half-marathon prior to his cancer diagnosis. He talked about how much he loved running, how he had previously done half-marathons, and how it was his dream to do another one. He talked about how now he wouldn’t be able to do a half-marathon on his own since he can only walk short distances.

Immediately I volunteered myself to push him in a wheelchair for the half-marathon, and one of the staff members agreed that it could happen. Why I, a college student, agreed to push a man twice my size in a wheelchair 13.1 miles is beyond me, but I guess that it is kind of representative of my personality. I’ve spent the past few months working on finding a wheelchair and organizing a team to help me push Mo. We have been training with the “gang” on Saturday mornings, and I now have a greater awareness of all of the hills in Nashville.

Gilda’s Club Nashville has provided me with more love and support than I ever thought possible. The members and staff have truly become my family. I know that anytime I need a hug, I can walk through the club’s signature red doors, and there will be at least 10 members with open arms ready to hug me.

Many of the women here remind me of my mom through their personalities, laughter and gentleness. There is now a “young adults grieving the loss of a parent group,” and over the past year-and-a-half I have grown close to the girls in my group. Twice a month I am able to talk about what it’s like to lose a parent to a group of people who completely understand.

So that quote from Lilo & Stitch really resonates for me, now more than ever. Gilda’s has become my family; therefore, Mo has become part of my family.

So many things in life are out of my control. But helping Mo complete this race is one thing that I can do so that a new member of my “family” doesn’t get left behind…and so that my mom will never be forgotten.

Portraits by Susan Urmy

Race photo by Joe Howell