Dealing With Illness in the Family / by Tynesia Boyea-Robinson

silverliningMy grandmother, Mama Pearl, has a brain tumor.  When I first found out, I immediately thought about how it would affect me.  I started sobbing and exclaimed to my husband, Keith, “I wish we had been closer!”  And then I let myself wallow in despair for the rest of the night, opening myself up to every possible horrible thing that could happen to her and how hard that would be on my family. This pity party is actually a big step for me, as I never used to allow myself this indulgence.  When bad things happened, I would Look, Fix and Move:  Look for the silver lining in the situation, Fix what I could and Move it along.  It was my response to the consistent crisis I saw throughout my childhood.  At an early age I became keenly aware of the not-so-nice aspects of the world around me and the varying ways people dealt with them. I observed that those who threw themselves to the ground asking “Why me?” were often broken by the unfairness of the world.  Those who pushed back in anger usually became hardened and desensitized.  I wanted neither of those outcomes for myself so I skipped over the “feeling” part and got straight to the problem solving.

Only later did I learn of the boomerang effect of not giving myself time to feel.  I learned that feelings don’t pass with time; they ferment.  They wait for the worst possible moment to reappear, infinitely stronger and more intense than if I had just allowed myself to feel them in the first place.  I’m still not very good at it and will sometimes need the cajoling of my closest friends.  I call them and tell them why all the things I’m feeling are petty and small.  They dismiss my protests, give me permission to feel and I move on in more healthy ways.

Of course this gear-shift is new to me and Keith is along for the not-so-smooth ride. I’m like a teenager learning to drive stick, sending him halting and jerking from one emotional response to the next.  The morning after hearing the news of Mama Pearl, I popped up already in problem-solving gear and swiftly created a list of action items:  Parents will take Dylan and his cousins to visit Mama Pearl for spring break; I will plan a separate trip with sisters in April; my parents would see her shortly thereafter.  Next I began digging for more information.  While my family left her healing entirely in God’s hands, I was more comfortable coupling my faith with research and conversations with doctors.

The digging soon revealed that Mama Pearl’s brain tumor was one of the most common and deadliest.  At that moment, and with my list of action-items now all checked-off, I dutifully assumed my well-worn role of eldest daughter.  I talked to my sisters about how they were affected by the news, I whistled in the dark with my mom and I analyzed the data with my dad.  I hope that my efforts helped them but, truly, supporting them allowed me to work through my own emotions, rather than feel paralyzed by them.

But my revised approach- Feel, Look, Fix and Move (emotional outburst followed by fixing and moving on)— was rendered useless when I visited Mama Pearl last week.  She has deteriorated rapidly in just a few short months.  The only possible silver lining I could attach to such a decline was that it was the treatment, not the tumor, wreaking havoc.   It was a sorry excuse for a silver lining and not even I was buying it.   Anyone who has watched a loved one in pain knows that no amount of planning, fixing, or checking of boxes can take away the profound helplessness you feel when you look into their eyes.

In an effort to exact some sort of power, some iota of change, on a situation completely beyond our control, many of us become care-too-much givers.  Our well-intentioned efforts to make our loved ones more comfortable are really our efforts to make ourselves more comfortable.

My family and I hovered, huddled, argued over the best way to tend to her needs.  We were so desperate to give her everything she needed that we gave her everything we thought she needed.  When we neglected to tune in, listen and open ourselves up, it instead became an exercise in fulfilling our own needs instead of hers.  We filled our need to act, to do and, in doing so, stripped her of choice.

We had all moved into problem-solving mode.  I saw reflected back to me what I had been doing for all the years I looped from “Fix” to “Move” and back again.  If we could just wash these dishes, prepare this food, fluff this pillow, maybe just maybe, we could (please, oh please?) do something to change it.

It seems that, as this disease and the treatment wage war on her body, Mama Pearl is waging a parallel war for her identity. She fought her whole life to be the woman she is today and she isn’t going to let a disease be anyone’s excuse to take that away.  She wants to protect, despite illness, what she and so many of us struggle each day to preserve.  The freedom to make her own choices without interference or judgment.  The space to feel what she wants to feel whenever she wants to feel it.

As a granddaughter, I don’t have much influence over Mama Pearl’s health or what to do about it.  But if I could fix anything, it wouldn’t be to schedule trips or analyze data.  It would be to support her in preserving her identity.  Finding ways to reflect the strength she has that the disease hasn’t touched.

If only we could stop fussing long enough to hear what Mama Pearl was really asking for. When she tells us that she will cut her fingernails when she’s “good and ready” she is telling us that she’s still a woman capable of making her own choices.  When she insists on buckling her own seatbelt, she is asserting a self-sufficiency that has served her just fine over the lifetime she’s spent with it.

And perhaps if we are still enough to hear what Mama Pearl is asking for, it would be quiet enough to feel what we were all feeling—sadness.  Because what is happening is sad and there is no need to push that feeling down under a pile of dishes or into the oven with the chicken.  There’s no fixing to be done.  Nowhere at the moment to move on to.

And in this quiet, not having to fight those little battles over her independence, maybe Mama Pearl can let go a little too and have the space to feel whatever she wants, even if—especially if— it is sadness, anger or despair.

So this time I won’t worry so much about finding the silver lining.  This time, I’m hoping my family and I can create our own silver lining.  While the cloud is dark, I’m hopeful that together we can create a space where Mama Pearl can just be-- no matter what rains may come.