I’ve been rather quiet lately as deadlines have loomed and obligations have multiplied. It’s always busy, the life of a writer. But it seems that the choice often comes down to living or writing.
I can have time to think, reflect, observe, and formulate the words expressing my deepest soul.
Or I can live a life.
Is it odd, as my life has become richer lately, that I miss my quiet days? I’ve made choices to expand my duties in recent months, and I’ve decided to learn some science and language.
I’m not a science kind of girl, and yet I’m learning how to say “kidney” and “itch” in Spanish.
A few years ago, I became involved in a residential children’s home. Yes, technically an orphanage. As I entered those walls, I prayed to learn everything. I wanted the heartbreak, I said, in order to know the true reality of living and working with those who need love the most.
My prayers were answered. I’m not sure I could ever go back to that work, but those few years shaped and deepened my life in a way I never could have imagined.
The heartbreak was real.
In the past year, the death of my friend has re-focused my priorities and lent an urgency to the age-old “meaning of life” angst.
I’ve been searching, and it’s difficult to understand why or what for.
I’ve become involved in hospice, and I’ve gotten extremely close (perhaps too close) to a woman dying of ALS. I can’t say too much, in order to respect her privacy, but these few months have broken my heart in a way I can’t describe.
Years ago, I asked for heartbreak so I could learn and understand.
This time around, I hoped for love and tenderness. I didn’t discredit the ugliness of dying, and I didn’t hold out unrealistic hope for cure or shiny happily ever afters. But I thought, perhaps foolishly, that I might find a piece of my heart that died with my friend almost exactly a year ago.
Anyone involved in hospice or intense medical care can understand the overwhelming, life-sucking struggle of advocacy. The system we set up to protect patients and providers can seem cold, heartless, and downright cruel. But when newbies come in and care too much, old-timers worry. They warn, rightly, of burn out.
I had one mantra as I began this new journey:
Someone on hospice should get whatever she wants.
At least within reason.
But that hasn’t been the case. Sometimes wants are unreasonable or unrealistic. When a relatively young person develops a terminal illness, how could any want be reasonable? Give me back my life, we would say. It’s too much and far too little at the same time.
It takes a village to care for a dying woman, and yet some days it feels as if the walls are closing in. I do one tiny part compared to all of the vast, various needs in her life. And yet…and yet…I find myself closing off. Dissolving into tears. Over-sensitive to the rage and frustration my friend can’t help but dish out.
Hospice, for all I’ve championed its merits and importance, means not getting what you want. It means acknowledging that life will never be the same again.
Life in hospice means rage and fear and desolation all at the same time, never knowing from one day to the next what might happen.
It’s a journey of faith.
But sometimes it’s sobbing into the steering wheel on the way home, wondering whether life or death would be kinder.
When I first began this journey, I was horrified at someone who said, “I wish God would take her.” And while my friend is likely at least a few months away from death (but who really knows?), some days I understand that sentiment.
If I had to live as a quadriplegic, unable to wipe my own eye or push my own glasses up my nose, wouldn’t I do a lot more than lash out in anger a few times a day?
If I had to give up my career, social life, and everything that I loved, could I be satisfied with waking up in the morning and never feeling the sun on my face?
As my life narrowed to a hospital bed and I had to choose between conscious pain or medicated stupor, how would I cope?
I’ve learned a great deal in the past few months, but this kind of learning continues for a lifetime. The hardest lesson, yet again, is the reality:
Life means not getting what we want. Not even in hospice when it only seems fair.
It’s a hard thing, accepting the imperfections of this world. But what is our alternative?
How are you managing with the imperfections of our world today?