The words "young adult survivor" might make some think this is another
variation of a reality TV show, but you know it's not. For someone coming out
of the childhood cancer world, you know it's much more than that. In a reality
TV show, it's a game. You volunteer to play, you can quit if you want to with
little consequence and despite the melodrama, no one dies. This is definitely
not true for the childhood cancer survivor experience - no one chooses to play,
you can't just walk away, and people do die. You didn't die, but you know others
who did. You also know that you didn't survive without paying a price.
The price that you paid to survive involves losses. Losses come in many different
shapes and sizes - You might have missed out on playing sports, going to the
prom, being in clubs, being the top student in your class, graduating on time,
graduating at all, working a part-time job for your own spending money, driving,
or combing (or not combing) your hair. You might have lost your boyfriend or
girlfriend, your senior (or junior or sophomore) year, the chance at a scholarship,
your plans for the future, and the freedom to go and be somewhere without your
parents worrying (as much). You lost your old self and felt different than your
peers. You may no longer have had the same concerns, values or priorities as
your peers. In other words, you lost a part of your childhood. As a result,
you made and lost some new friends. Some of these friends didn't just move away
- they died from a disease a lot like the one you had (or have). You may have
lost the confidence that you will live long enough to grow up. There's other
losses for some - a leg, an arm, an eye, the ability to have children in the
future, the ability to make the kind of grades you made in the past, physical
strength, speed, and endurance, your old image of yourself.
With all these losses there are questions. Why did this happen to me? Why did
I survive (so far)? Why did the other person die? How can I look at the world
the same? Can I hold on to my old beliefs about life - at least some of them?
What will the future be like for me now? How do I live in the shadow of what
I've seen and been through? Many of these questions lack good answers and may
force you to reevaluate your faith, your relationships, your goals and your
outlook on the future.
Growing up - becoming an adult - can be a hard and heavy job even without childhood
cancer. Having childhood cancer changes your path, but how it changes your path
will be different for each person. The gains and losses will be different for
each person. But the fact that there are losses is constant.
With these losses, grief comes. Grief is what happens to you on the inside when
you lose anything of importance, and childhood cancer brings losses. That you
will have grief of some sort is certain - you don't get a choice (like with
having cancer). What you do with the grief is a choice (also like having cancer).
When someone gets cancer, one could just say, "I can handle it, it's no
big deal," and then do nothing about it. Ignoring cancer would be a bad
idea, and ignoring real grief or real loss would also be a bad idea.
So what do you do? You call it what it is (grief) and you find ways to keep
it from causing you any more losses - only let it take what it must and what
you don't want anyway (still a lot like cancer). There's no chemotherapy or
radiation for grief, but there are things people do to keep it from spreading
and making them worse - talking, being with people, writing, reaching out to
others, praying, realizing what has been lost and what has not been lost, working,
playing, thinking, crying, exercising, being alone, being with others, finding
a project, feeling the pain, setting new goals. The prescription would be different
for each person, and like treating cancer, sometimes you have to find a variety
of strategies to fight it - no one way will do it all.
In the most recent Harry Potter book, Harry Potter and the Order of the Phoenix,
Harry is angry and upset. He's tired of all the trauma and losses, and his most
recent loss experience (at the end of the previous book, Harry Potter and the
Goblet of Fire) was the death of a friend with whom he had gone through very
difficult times. In the Order of the Phoenix, for the first time Harry sees
thestrals - fierce, meat-eating horses. These special horses have pulled the
carriages of students to the school each year, but Harry has never seen them
before - he had thought the carriages were just pulled by magic. His closest
friends still can't and don't see them, but he finds a few friends who, like
him, see them very clearly. From one of these friends, Harry learns that only
those who have seen death can see a thestral. Harry friend's death has allowed
him to see the strange and scary reality of the thestrals. By the end of the
book, Harry is able to put some thestrals to good use in a heroic quest, but
he is able to use them only because he can now see them, and he can see them
only because he has experienced the loss by seeing death.
In the midst of all the losses of childhood cancer, there can be some hard won
gains. Some find maturity, wisdom, and perspective that can be beyond their
chronological years. Not all, but some. Is it an even trade - deepened perspective
and wisdom for a whole host of losses? Not for most, yet the gains can still
be real and present. The impact of cancer may affect the choices you make for
your future and the impact that you will have on other childhood cancer survivors.
One teenager with cancer said he didn't want to just survive cancer, he wanted
to "kick its butt." He did. He later wrote of a fellow young adult
with cancer who eventually died after a long, up- and-down struggle. Because
of how she lived before her dying, he wrote that she "gave cancer a sissy
name." Both saw what was lost but didn't let the losing be the last word.
They both made the choice to survive for as long as they lived, or maybe it
was to really live for as long as they survived.
The content of this article was contributed by Greg Adams, LCSW, ACSW, CT-
Director, Center for Good Mourning, Arkansas Children's Hospital. The article
was first published in the Summer 2004 on www.beyondthecure.org,
a web site for survivors of childhood cancer.
