Bridging the Gap

Our Mom was paralyzed in a car accident 29 years ago today.  She didn’t realize that today was the day because she was playing Bingo.  But, her kids did.  

My younger brother and I remember the knock on the door in the wee hours of the morning.  We were the only ones still living at home.  I was 16, he was 14.  My sister was newly married and my older brother was in boot camp at the Naval Training Center in Illinois. 

It was our Uncle and Mom’s best friend at the door.  Mom had been in an accident.  She hurt her back, so she was flown to the nearest city with better doctors, is what I remember.  But, I also remember thinking she just wouldn’t be able to lift anything heavy for awhile.  

That turned out to be true.  But, how true, I had no way of knowing.  

My brother remembers a yellow envelope with her belongings, cut rings, and money covered in blood. I remember seeing her in the ICU, how bad the room smelled, metal coming out of her head and arm, asking her how she got some random abrasion, and hearing her robot voice say she would walk again. 

I left the next day for Disney World for my planned Spring Break trip with my high school choir.  I didn’t want to go, but staying wasn’t helpful to anyone.  She came home from the rehabilitation hospital three months later.  My brother and I became caregivers, and adults who looked like children.

Today, 29 years later, I’ve been very unlike me.  Fighting tears most of the day, actually.

I heard River of Dreams on Saturday while I was making dinner.  I heard it because I put it on my Spotify playlist awhile ago, because it reminds me of my Mom.  She used to play it on the piano and the piano itself would come to life.  But, Saturday, while standing in my kitchen, it brought my walking, piano-playing Mom and my little girl self into Room 167 at the nursing home, and I wept for all of us.  

So many losses over such a long period of time.  If you’re 29 years of age, you’re still young.  But, if you’ve been in a wheelchair for 29 years, or caring for and loving someone who has, it seems like a different kind of 29.  Maybe like dog years, where 1 year is really 7 years.  Or something like that. 

But, I need to write today, because I’m still surprised by my emotions, which tells me I’m not as smart as I think I am.  Especially after sooo long, and after Saturday.  I thought I got “it” out of my system.  Whatever “it” is, exactly.  

After talking to Mom today, and realizing that today is just another day for her, I think I am figuring it out.  

Today, I am sad for me and my brother, and for losing the last few years of our childhood.  I am sad for my older siblings, too, but in a different way.  We all bear and have borne different kinds, levels, and layers of suffering because of our Mom’s accident and the upside-downness that follows.  Where we went to college, or not.  Where we lived, or not.  How far we dared to dream, or not…

Even now, she is often at the center of our thoughts.  Our emotions vary widely, depending on what is happening with her, what she needs, or what we wish were different.  

But, because her suffering is and has been so great, her children’s suffering, as it relates to her own, remains unseen.  She is like a ship making her way through the ocean.  We are tied off in little inner tubes bumping along behind her, riding the waves as they come.  

It’s not that she doesn’t care, she just can’t see us back there. 

I was recently trying to convey some uneasiness I had about some changes in her health.  She said, “Well, how do you think I feel?”  

She’s right, of course.  

But, that didn’t keep me from feeling my feelings, just like it hasn’t for 29 years.  But, there’s often no place for them because her suffering is so giant and unending, it hogs all the room.  So, I stuff them, and cry for her instead because there’s plenty to cry about.  

And now I know something else.  I am familiar with pain created by a gap in understanding.  

I am writing a story about what life is like after losing a spouse.  I am an interesting author for such a story, because I have not lived that life.  I hope I never will, but am not naive enough to think I won’t.  But, I meet weekly with people who are.  I hear their stories and recognize their great suffering because their spouse died, but also that their suffering is unnecessarily greater because it is not seen nor understood.  

After today, I understand my motivation and my ability to write about someone else’s suffering a little better.  I see them and I see a gap.  

I don’t like gaps.  They’re unnecessary.  Love and compassion and listening and trying to understand can close them, or at least come close.

Dear Mom, Josh, Mike, and Michelle, spouses missing their spouses and all who live with a gap in understanding,

I see you.  I hear you.  I love you. And I want to understand…

P.S. Heidi, same goes for you…

Love, 

Me

 

A Gentle Disintegration

Yesterday, we took our first daytrip to the beach without all of the boys.  The oldest was working. Today, the middle one drove solo for the first time.  He got his driver’s license on Friday.  He’s the really busy one and his busyness always necessitated a ride in the middle of my free time.  So, we celebrate this new freedom right along with him, rather than validate the pit in our stomach provoked by the thought that “this is really happening.”    

As a wise friend’s wise mother used to say, “Only sick birds don’t leave the nest.”

So, I don’t ask for time to stop or slow down because it is all well, and happening as it should.  I’ve mentioned it before, but my friend calls the years your children are home, before anyone can drive, the “sweet spot”.  Everybody is home, safe and secure under a loving and watchful eye.  My sweet spot is disintegrating, but I am grateful that it has been slow and gentle.  Measured in days and years, not seconds and minutes.  

These past two weeks, many young people have lost their lives to murdering madmen.  I get lost in trying to accompany their parents in their grief.  I don’t know any of them, but I obsess, pray, and force myself into the present.  And repeat.  I see social media posts of people continuing to smile and live their lives like nothing has happened.  I am amazed at this, at first.  And then I join them, because I need the distraction.  It is refreshing to see and share the good, as well as the bad, I reason.  Like some weird balance in this land of unrelated-but-loosely-connected people.

Though social media wasn’t born, yet, Dr. Haim Ginott in “Between Parent and Teenager” describes the benefit of these loose connections, well. “Many teenagers are tormented by terrors they think private and personal.  They do not know that their anxieties and doubts are universal.  This insight is hard to convey.  Each teenager must attain it on their own.  It takes time and wisdom to realize that the personal parallels the universal, and what pains one man pains mankind.”

We have so much to learn from one another.

I sat with her again on Friday.  She was asleep at the dining room table and came to with a touch on the shoulder and mention of her name.  We flipped through her book, looking at the pictures.  She didn’t remember writing it, seem to recognize her name on the cover, nor think it odd that if someone else wrote it, they sure included a lot of pictures of her family.  

I was grateful again that she has given us so much to talk about in these pages of hers.  Laugh-out-loud moments with her children, layers of loss, years of sacrifice, and joys beyond all telling.  If we didn’t have them, I fear the shallowness of what would remain in their absence.

It is my ability to share her story with her (because she had written it down for herself), that I do the same.

One day, I may be dependent upon a stranger who visits frequently to tell me again who she is and what is this, again?  Hopefully, hearing the stories will pluck the strings in my soul, releasing all of the chords to my favorite song.  I will remember how we all “survived being alive”, and marvel at how whole and integrated I feel after a long life of unhurried and gentle disintegration, and a visit from a stranger.

Life's Pages

I've been thinking about writing a book for as long as people have been telling me I should, which has been awhile now.

My husband insists I have "a book in me" and breakfast with one of my dearest friends always starts with the same question.  "Have you found a publisher, yet?"

Honestly, I laugh at the thought of having anything left to write (and the irony of this post in light of that).  Ecclesiastes and nothing-new-under-the-sun are forerunners in reasons why not.  There is no storehouse of ideas, or anything within me that feels like it is waiting to be written.   

Perhaps, it is what I've already written, they suggest.  

While this is very nice and affirming, it hasn’t proven a springboard for anything other than good feelings about what has already been done. 

But, occasionally things happen which feel like a nudge toward something. Things that make me think that maybe I shouldn’t rule it out.  Not just, yet.

Little things like little questions in little blue books that say, “Take something that feels big and make it smaller.  What is the first step?”

And big things, like meeting a new hospice patient and her family. Carol.  Her greatness unfolded right there at the kitchen table, in part, but not exclusively borne of her length of years.  I admired her bright eyes, painted fingernails, and her paintings on the walls.  

I inquired about whether she'd ever consider writing a book.  Her daughter-in-law replied that she already had.  Her son disappeared from the table and placed it into my very hands.

I had to fight back tears, and said as much.  Not just because she'd done the work of it, but because an aggressive dementia has closed the window of time when doing any such thing again would be out of the question.  She simply stated that she started with a table of contents, went as far back as she could remember, and went from there.  

I’ve only just begun to read it, but I am in awe of it.  Its cover, contents, and weight.  I think about all that has happened within her life and its pages, and wonder how much of it she remembers or would have been lost without her rendition.

She reminds me that there is more than one reason to write a book. For yourself, now.  For your family.  For hospice chaplains and interested strangers.  For profit, if you have the means.  And for yourself, later.

Only the last reason might be the one for me.  The one that pushes me over the edge from dreaming to doing.  What if by writing these things now, I can revisit my life again as me with intimate knowledge or as an outsider who has forgotten?  As one who admires the main character in the story, but has forgotten I was her?  Or as one who gains some warmth of soul by hearing a “new” story written in a really, really, really familiar way?  

Carol’s first chapter begins with a quote by James Barrie. “God gave us memories that we might have June roses in the December of our lives.”  

Thank God for difficult ideas and realities put simply and beautifully. 

And thank God for Carol and the Prestenbach family, The Bends In My Road, and the ability to inspire at every age and in every circumstance.  For June roses in December, thoughtful planting, safe-keeping, and books waiting to be written…

Stained Notebooks

I’m sitting at my desk in my bedroom.  Feeling contemplative after talking with children who can’t be with their mother who is dying in a facility, and looking at graduation pictures of other children I used to watch play on the floor.

The notebooks I use for work sit quietly by.  Some are used up and some are brand new.  Side by side, I notice the difference between them.  The used ones seem to have thicker pages, wrinkles, rips, and coffee stains.  The new ones are crisp.  Simply blank and available for use, having no more of an idea what will fill their pages than I do.

I imagine what each of our books looks like.  Not a bunch of little books with lots of names.  But, a big book with only one name.  Yours.  Mine.

I purchased the printed version of this blog last November.  It is printed on 8.5 x 11 paper, weighs about seven pounds, and is over an inch thick.  When it arrived, I marveled at its substance.  Did writing periodically over seven years really amount to something that I could hold?  Something that would feel heavy in my hands?  

Can you imagine if the story of each one of our lives were actually written down on paper?  The number and weight of the pages?  

In the physical life, they are written in our bodies, our hearts, and on our faces.  Grandma Bert is the perfect example, and my favorite, as well.

Her birthday was May 16th.  She would have been a spicy 93.  Her story was written on her face.  Her beautiful face.  Her lack of education and finances, her abusive husband, a murdered sister, losing three of her five sons to traumatic deaths, including the Vietnam War, and all of the long years in between.  And she smiled in spite of it all.  Man, I love (and miss) her.  

I imagine the weight of her book, containing all of the stuff of her 86 years.  I would love to read it in its entirety.  

Actually, I would rather she read it to me.  

I believe she is in Heaven and I hope to see her again there one day.  Should that happen, I may ask her.  But, maybe it isn’t as important there as it is here.  Or maybe it is.

Your eyes beheld my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them...     Psalm 139:16