As an advocate for adolescent and young adult cancer awareness, I have a lot of friends and colleagues who post daily comments on Facebook about what it is like to live with cancer and how its short- and long-term effects impact their lives Rarely a day passes without someone sharing the loss of an AYA to cancer. And I wonder... how are the friends and parents coping?
The other day, I read a post by a woman who was angry at the fact that people kept saying she had "lost" her husband. She said, "I didn't lose him. He died." It was my experience as well, when my daughter passed away from cancer, that we often use euphemisms to avoid the word "died." I empathize with this woman's lament. Yet, is it not better to say something than avoid the subject altogether? The death of a loved one can be as isolating for those left behind as the cancer journey itself... if we don't at least try to reach out. Even if we don't know what the "right" thing is to say or do.
I am currently following the anguished Facebook postings of two mothers who have both recently lost their teenaged daughters to cancer. They both hate it when people tell them "time heals." They aren't ready to hear that yet. After spending the last five to 10 years totally focused on caring for their young daughters, the void that is left is not just in their hearts -- it's in their whole lives. Their very identity and purpose for living is gone. How does one deal with that? What does one do with the sheer amount of time that has now opened up? Where have all those people gone, who rushed in to be supportive during those first few weeks after the death of the loved one? Is life even worth living after the loss of a child?
It has been 13 years since my daughter died, and I am still exploring the complexities of grief. I have no all-encompassing answer to these questions. What I did to keep breathing is different from what someone else will choose to do. I think that is the key word: choose. We can either choose to follow our child into the grave or learn to live without them. Live or die? Cancer stole their young lives... will it steal yours, too?
There are as many ways to cope as there are people trying to cope. One of the mothers I mentioned earlier helped her dying daughter check off as many items from her "bucket list" as possible before she died. Afterwards, some of her Facebook friends made a cardboard cutout of their pal and photographed themselves with it at various bucket list events... as if she was there with them. I did a similar thing for my daughter Sara, an aspiring actress who had always dreamed of "making it" in Hollywood. After she died, her documentary film "Sara's Story" was screened at the West Hollywood International Film Festival, in the famous Hollywood Roosevelt Hotel where the first ever Academy Awards were held. I took a headshot of Sara with me to the festival and took photos of her with celebrities who were also in attendance, as well as many other famous Hollywood icons. I know Sara would have loved all of it. It made me feel good to help her fulfill her dream of making it to Hollywood, one way or another!
Note that a "bucket list" project doesn't have to mean big trips to Disneyland or Europe... it could include smaller goals closer to home, like watching the playoffs on a big screen TV, getting to see the Hollywood sign, attending special concerts, watching a sunset on a beach, buying the latest nail polish color and painting your toes, getting matching tattoos. Post the list on Facebook and see how many friends and family members can help make one of the bucket list wishes come true.
Here are some additional suggestions that I have seen posted, by others who have been through the loss of their AYA child, relative or friend:
- create a memory photo album/scrapbook that celebrates the loved one's life
- join an organization that your loved one cared about (animals, dance, art, cancer awareness/advocacy)
- talk ahead of time with family and friends on how you want to get through difficult anniversaries like birthdays, cancer diagnosis date, holiday celebrations, weddings, etc.
- grieve, rage, wail, your pain out; hit pillows, run it off, walk it off... keep breathing
- join a grief support group
- pour your aching heart out in a journal
- give yourself permission to LIVE
Personally, I love to stay connected with all the people who knew Sara, especially her young friends. For me, this helps keep Sara alive in my heart and soul. It helps me to keep breathing. I can only hope that all you caregivers out there in the same position can also find a reason to keep breathing. It is worth it!
This piece was originally published in the Caregiver Section at Cancer Knowledge Network.