We all know the drill. Young adults get to experience the joys of existential crises. We try to figure out the great mysteries of life: what is my purpose, who should I love, how am I ever going to find a job in this economy etc etc etc. The early twenties are a time for messy experimentations, for trial and error, for successes and failures. They are not, ideally, a period in which you should worry about life and death!
Nonetheless, no matter how much it hurts to think about it, many men and women have an up close and personal experience with their own mortality at a far too early age. Being a young adult with cancer is a particularly difficult battle. Everything is up in the air (including health insurance for many) and it is not an ideal time to be trapped in a hospital bed. Bloggers like Suleika Jaouad and Ethan Zohn have done a fabulous job drawing attention to an age group of cancer patients who can be overlooked both in terms of 1) societal attention and 2) research.
I'd like to add onto that conversation with the benefit of my own point of view: Being a young adult "caregiver" is another unacknowledged challenge that completely and utterly sucks.
It all comes down to the difficulty in categorizing what a young adult should do. When I think of how people should care for parents with cancer I think of two cultural images that have been planted in my head by TV and film narratives.
1) The children of young parents who are too young to participate in caregiving.
These archetypal figures are often the recipients of support in the form of meals, advice, and maybe some mentorship from their coaches or teachers. In an after-school special world, the community reaches out and raises these kids so the parents don't have to worry so much.
2) The wise and mature adults caring for senior parents
These children have dependents of their own. It's a challenge to balance their own concerns with the well-being of their parents, but in the end the two generations reconnect and find some peace in a time of chaos. Adult caregivers are often depicted as enjoying the generosity of their friends and family who offer to babysit the kids and cover for them at work.
... so what about the young adults?
At least in my own case, I was still forming my own discreet life when my mother was diagnosed with cancer, but was a far stretch from having a rock solid support structure or a dependable job with lots of personal leave. I could sense that my friends, facing similarly uncertain positions in the world, were often at a loss when it came to support. It's tough! Life gives us all very little in the form of blueprints for dealing with this sort of situation.
Immediately after the diagnosis, I struggled with questions that were impossible to answer:
What is caregiving anyway? How could I *be* a caregiver when I live 2,854 miles away from home? (I googled it) Should I give up my job? Should I soldier on? Was it "okay" if I traveled out of the country? Who was going to take care of my mother as my father continued his own work?
Even after I made the decision to care for my mother during her bone marrow transplant, I stayed awake at night agonizing over the most trivial, and yet most critical, details.
- My career was just starting to develop. Could I afford to take a few months off without risking my reputation as a hard-working and dedicated employee?
- My culinary victories had so far included making simple dishes like pastas and stir fries. Could I really be trusted to cook an immune-system friendly menu for a few months?
- I was still working on driving a manual transmission and parallel parking. Would I be able to drive my mother to the hospital in under 30 minutes if she had a bad flare of graft vs. host disease? (When I thought we would be doing the procedure at VCU, the images of the narrow and hilly streets gave me quite a few doubts).
The hard truth is that there are no quick fixes for the variety of self doubt that arises when you are placed in a position of such weighty responsibility. My mother's physicians changed their minds about the risks of a transplant and took the pressure off of my shoulders.
Still, there are hundreds upon hundreds of people who face this dilemma on a daily basis. Just thinking of my extended circle of friends and acquaintances, I can think of a number of us who have been placed in a strange limbo state when we have been asked to care for a parent.
I bring this issue up mostly because I'd like to continue stripping cancer of its stigma. It's hard to make oneself open to cancer and all of the heart-breaking stories that accompany intimate knowledge of the disease. Even now that my family is not exactly entrenched in "cancerland" to the same degree, I feel it is important to support everyone I know (and even those I don't) while they go through the experience. Why? Because I know how lonely it can feel when you are dealing with one of life's obstacles that makes other people squirm, look embarrassed, and turn away.
So lets make a resolution to acknowledge those things that make us awkward, uncomfortable, and sometimes even vulnerable. Lets work on seeing those people who might not fit into archetypes and categories. Not only do I believe that this attitude can make our society a more welcoming and tolerant place, I think it makes us more generous and empathetic human beings.
Great post and keep telling your story! I'm sure you make so many other people feel a little bit braver to tell theirs too:)
ReplyDeleteMegan, I can relate in some capacity. Although my "20 something" story doesn't involve cancer it does involve death. I had just begun my 2nd semester of my Senior year of college when I received that horrible call informing me that my 19 year old sister (who was a sophomore in college) had been killed in a car accident. The following days and weeks were surreal.
ReplyDeleteI came to realize that there is a plethora of books regarding the grieving process. In our case I found many books relevant to parents who've lost a child cope with the unnatural order of events and there are picture books written to help young children understand death in their euphemistic ways. What was (is?) lacking were books geared toward siblings who are grieving the lost of their beloved sister or brother or ANY books relevant to grieving the loss of a loved one (regardless of the nature of your relationship) when you are a young adult. We learned that there are even summer camps for teenagers who've lost a family member. Where do the 20 Somethings go for support??
Seems like society has left out or overlooked the "20 Somethings" regarding real life issues as if we are immune to them as we begin to experience life on our own.
Regarding support from our friends and peers, it is hard. Most have not yet faced something so daunting as cancer or finality of death of an immediate family member and have NO idea what to say or how to support you. In their uneasiness, some will glance away not knowing what to say. Some will repeat advice someone gave them. So many begin saying the Exact. Same. Thing. And you hear it from so many so often the cookie cutter responses, such as "We're glad you're back..." begins to feel a bit too generic. But you realize they are the brave ones being able to even acknowledge the gravity, and they are sincere. They have no idea you've heard the same comment 15 times earlier the same day. You are able to realize it's an awkward situation for them.
I kept a journal during my grieving process not only for my own benefit, but with the thought that I would possibly one day write the book for the 20 Somethings suffering from grief and loss. It wouldn't necessarily be grounded in deep psychology and "The 7 Stages of Grief," but rather to let other young adults know they are not alone. There are others who've gone through these devastating trials and come out stronger, more mature, more empathetic, and more capable of helping others they encounter along life's path. That--eventually--good can be found from the bad, and not just found but perhaps even created by those that remain for the benefit of others.
...Just like you are doing by reaching out, sharing your story, and promoting bone marrow registration, etc.! Who knows how many you have inspired and will inspire through what your family has experienced. It is not an easy road you have had to walk this past year, but you should be proud of yourself! You remained strong, stepped up to help every way you could, continue to advocate, all while maintaining your own academic and personal ambitions. That is inspirational, and sharing your story helps others in ways you may never even know!