Family

it isn’t about the flowers

vday 2

In my junior year of high school I was assigned a research report on something that was of interest.  I was to write it and submit pamphlets for my AP English class.   My classmates had interesting subjects and the teacher looked at me to inquire what research subject I would choose.  We were in our high school library and I had no idea.  Not very many things interested me.

As I sat looking through reference books I came across a phone number and wrote it down.  That piece of paper sat in my backpack for over two weeks until I finally got the nerve to punch in the numbers to call the 800 number.

It was to the National Cancer Institute (NCI) in Bethesda, MD.

The operator kindly took down my information and promised to send information about colon cancer and the research NCI conducted.  A week later, the thick envelope arrived in the mail and I quietly wrote my research paper.  Years later I realized my English teacher had given it to my counselor and  it had determined the pathway I would take for the next eight  years.

I find myself on the National Institutes of Health (NIH)/ National Institute on Aging (NIA) website.

http://www.nia.nih.gov/alzheimers/publication/alzheimers-disease-genetics-fact-sheet

punnet squares

The middle son continues to plot Punnett squares and is sent upstairs, by the hubs, to me.  The man enjoys advanced mathematics and computer programming languages (he spent this last weekend creating clouds) but is stumped by genetics.  What are the differences between mitosis and meiosis? this son asked the hubs and soon, his footfalls were heard trudging up the stairs.  Perusing his book I found the section about color blindness; the genetic condition this son inherited from one of my X chromosomes.  Reds and greens are not distinct for him and so I chose the above square to illustrate how I passed it down through meiosis.  None of our other sons express or carry this gene.  Only this one.

Early this morning, as I drove this son to his junior high for a field trip, we sat at the traffic light.  He talked of his color vision deficiency and science.   He is attending a math field trip at the professional hockey venue to learn how math and science is utilized in this sport.   We talk of Punnett squares and I wondered if he could distinguish the colors of red and green on the light.

Science seems to be on my mind too.

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Over the weekend we watched, The Theory of Everything; the film about Stephen Hawking’s life.  The hubs and I had quietly sat while our sons remained in the den; plugged into their computers.  We had been surprised when the middle son joined us; watching the entire movie.  Last evening I finally watched Still Alice based on the book by the same name.  Those who’ve watched it said to bring tissues and as I rushed into the theater I realized, I had none.  When the lights came on two hours later I hadn’t needed them.

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While amongst other moms at a birthday party yesterday  the inevitable question asked was Did you have a nice Valentine’s day?  I had gone to the supermarket on Saturday, considering what to cook for our family dinner.  Each Valentine’s day we dare not venture out amongst the long dinner lines and happy couples with our three boys.  Instead, we choose to make a fancy dinner at home.  But the day had arrived and I had neither any Valentine’s gifts for my sons nor food in my fridge to constitute anything special.  And so I had stood in the supermarket’s butcher counter considering my options after my heart healthy jog, that morning.  The steady line of men came into the store purchasing flowers, cards and candy.  When I grinned at them they sheepishly looked contrite; caught doing everything at the very last minute.

I, myself, had purchased the flowers at our local Costco the day before.  The hubs loves carnations and myself, roses.  When the hubs discovered this he looked at me questioningly.  Amidst a busy day of going here and there I had returned home, briefly, and caught my household cleaning to attempt to surprise me.  I had had no expectation for this day and was happy to discover their sentiment.  After the dishes had been put away the hubs and I quietly sat.  We have had years together with countless ways of celebrating our love for one another.   I pointed out the flowers and he smiled.  “Do you think our boys will remember our Valentine’s days?” he asked.  I quickly answered no, they probably would not.  His reply had surprised me.

Yes.  They will. 

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He pointed to the flowers; the real reason I had most likely purchased them.  He and I no longer need the popular notion of sending candy and flowers, though we are most happy for others who do this.  We were already over the moon that my cousin was finally engaged to her long time companion who I always mistakenly introduce as her husband.  She had sent the text with the picture above.

Why am I rambling about seeming unrelated topics, you ask?

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The pieces of my jigsaw puzzle are finally fitting into place.  My various lives are abutting together; disjoint as they sometimes are.  I am becoming whole.

As disjoint as all the topics above are, they are relevant to who I am.  For years I kept them distinctly separate, compartmentalized away into various regions of my subconscious.  But the key to discovering who I am was to open these doors and to dwell within these memories.   I am grateful that my hippocampus is intact and that these memories can still be retrieved.  It is these things that define who we are.  Without them life loses its meaning and you become a vacant vessel.

If you cannot remember the things that you love and did love, why live?

To the question of how my Valentine’s day weekend went? It’s complicated and not at all about the flowers.

It got a kick start with sixteen women watching Fifty Shades of Grey; a book chosen by our bookclub several years back.  We had all guffawed and enjoyed the break from the busy school year since the date of this bookclub had been in June.  We didn’t have high expectations of the film but enjoyed the social outing.  They had to kick us out of the theater after the movie, the next round of women queuing to enter the next showing.

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On Saturday our family dinner came together.   I wonder what our sons will take away from Valentine’s day.  Most years I decorate my home for each season but time, this year, had gotten away from me.   The boys dug into the candy,  lit the candle and hungrily ate their dinner of steak and lobster; a rare treat.  When asked what our favorite things about this day were, the hubs remarked he enjoyed trying to surprise me, with our sons, by cleaning the house (my favored love language of acts of service).  My favorite thing had not occurred on Valentine’s day.  I had been sick and congested and overwhelmed with the messy life I had (my car and home) last Tuesday.  He had commanded that I drive my vehicle to a carwash; something he normally does not do.  He’d rather clean it himself.  It is amazing what a clean car can do for my psyche.  It had spurred me on to complete other tasks; sick as I had been.  I organized my computer area, answered emails and efficiently cleared my desk of stacks of paperwork.   Grateful I had hugged my hubs, knowing this was why we were married.  This was a gift.

The common theme I took away from watching The Theory of Everything and Still Alice was about love.  Jane Hawking’s devotion to Stephen as his muscles deteriorated to motor neuron disease aka Lou Gehrig’s and the fictional Alice Howland’s deteriorating mind to early onset Alzheimer’s.  After watching the Hawking movie, with us, the middle son laughingly joked that half of the movie I gripped the hubs’ arm in tears.  When the hubs inquired about Still Alice, side-by-side in bed, I turned to him matter-of-factly.  I forced my sleepy eyes to open and voiced the question aloud, once again.

I asked if he didn’t want to reconsider purchasing long term care insurance, should he ever need to place me in a locked care facility.  For Alzheimer’s.

Watching Still Alice the question returned, would I want to be genetically tested?  Although my own mother had late onset Alzheimer’s her marked decline was fairly rapid.  There is a stronger genetic component to early onset Alzheimer’s; research suggesting the involvement of chromosomes 21 and 14.  Late onset also has a genetic component but there is discussion that environmental factors may be instrumental in turning these genetic mutations on or off.

Best Friendsbeing mortal

I have always known I would NOT choose to take the genetic test.  I hope that my lifestyle choices and environment can factor against the likelihood of this happening to me.  The Punnett squares visualized in my mind and I ponder if I will ever have a conversation about this with my three boys.   I have a 50/50 chance.

The Best Friends Approach to Alzheimer’s Care book is shown in the Still Alice movie several times and I was reminded of my time with the Alzheimer’s Association, meeting David Troxel who was affiliated with the local chapter’s board.  I will always advocate for increased awareness, my purple pin upon my suit blazer since 1999.  Currently I read Atul Gawande’s Being Mortal; affirming my time when I too, spoke with geriatric parents’ families about end of life issues.  I had been interning under a wonderful physician and walked the halls of County hospital.

This was/is the person I am, the one who delves into the darker places that people don’t care to trod.  Aging.  Mortality.  At age sixteen this was the topic of my paper; a downer amongst my peers.  Only one other person in this class wrote a paper that none could truly understand; an essay about black holes.  She became our valedictorian and, to no one’s surprise, chose astrophysics as her major and matriculated to Cal Tech.  Hawking was her idol.

The hubs turned to face me, his gaze direct.  He knows my wishes to be placed in a locked facility; should my mind deteriorate like my own mother’s.  He chooses NOT to place me and I vow to do the same.  I have walked the halls of these places, both as a gerontologist and as a family member.  My years in the neurolab taking data on hippocampal lesions in rats and histological slides on ApoE and fibrillary tangles were progress but there are still no guarantees for finding a cure.  The hubs negates the need for long term care insurance and jokes that he’ll implant me with a microchip to track my whereabouts.  Most likely he will find me in our local supermarket, chatting with the cashiers as I do now.  He tucked me into bed and turned off the light.

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This is real life; his depth of understanding and binding love the real take away from my weekend. This is what I think of when I see roses and carnations; attaching them as associative clues.   I continue to catalog my memories and hope I will always be able to retrieve them.

 

 

 

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Family

the gaps in my memory

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It is a three day weekend.  There are piles of paperwork on the floor next to my office chair that await: requests for 2014 tax documentation, audit folders for PTA and stacks of paperwork to sign for field trips, science projects and school conferences.   The work folders remain in my book bag.

I continue to fill in the gaps in the 1,000 piece puzzle and, to both my family and I’s surprise, I cannot stay away from it.  The daylight filters through my living room curtains and illuminates my coffee table as countless hours are lost patiently sifting through the pieces.

allegory.  noun.  “a symbolic representation.” Def. 2. Merriam Webster Online, Merriam Webster, n.d. Web. 18 Jan. 2015.

The puzzle is the allegory of my life.

The jigsaw makes me sit in the present moment.  With the five of us within my four walls I can enjoy these hours unencumbered.  I don’t need to rush to bring kids here, there and everywhere.  I do not worry about my to-do lists, schedules and due dates.  I am here.

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There is a gap that continues to bother me and each day I actively search for the colors that will fill it in.  I have been unsuccessful in locating these pieces.  I know eventually, I’ll fill in the gaps.

It’ll work itself out.

Recently I had asked the members in our bookclub to share a book that had special meaning to them; a book that our group of ten had not read.  Some chose classics like The Secret Garden by Frances Hodgson Burnett or Jane Austen’s  Pride and Prejudice.  Others chose contemporary books that renewed their love of reading.   I have read some amazing books over the years.  But the one that remains in my mind, one that I have not shared, is Lisa Genova’s Still Alice.

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I had read this novel some time ago and had forgotten it was going to become a movie.  I was surprised by the text from  a girlfriend, informing me of its limited release date on Friday, January 16th.  I was shocked when I watched my early morning show and discovered one of my favorite actresses, Julianne Moore, won the Golden Globe and received an Oscar nod for this movie. I hadn’t even known she was starring in it.   How can a movie that hasn’t been released have so much hoopla?

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And as all things do, the thoughts from my subconscious circled in my mind.  In my dreams.  It brought me to the place that I rarely go to…the gaping hole in my life that stays hidden away.

Alzheimer’s Disease.

With the release of this movie my past comes rearing back.  It is my biggest fear; one that my hubs shares with me.  Will I lose my memories, my mind like my own mother did?  Am I genetically predisposed?

It is one of the reasons I painstakingly document my family with photos.  I read books for enjoyment but also know that reading stimulates the mind.  Last year I chose to re-subscribe to my Sunday paper; reading it from cover-to-cover.  Each December I self-test myself  when I place my hands on the ivories; attempting to play Irving Berlin’s White Christmas from memory without any practice.   The factors that can reduce the risk of Alzheimer’s include: reading, mind stimulating games (like Sequence or puzzles), music, education level, social interactions and healthy lifestyle choices.

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I delve into all things mental; the neurogerontologist within  stimulating neuronal networks to keep the synapses current.   The years in the lab return; the slides of neurofibrillary tangles and plaques.   Last year my mind was scattered; the multi-tasker pulled in many different directions.  Mediocre at everything; good at nothing.  I literally lost my mind.  When I began to lose my train of thought or began a task and forgot mid-stride; I was on full alert.

Life had its own way of working itself out and I took a break.  I cleared my schedules.  I worked hard to discover the motives for doing the things that I did.  I began to sit quietly and listen to my intuition.  It was hard to hear it amongst the chaos and noise I had lived in.

I bought books on organizing my mind.  I retook the multiple intelligences test to determine my modality of learning. Unknowingly, I bought the jigsaw puzzle.  I searched for my Still Alice book and realized I did not own a hard copy.  It remained buried deep in my electronic Kindle files.  I chose to step outside of my box to volunteer as a bookkeeper; to learn new versions of QuickBooks.  I do not have a financial background but push myself to expand my horizons.  I seek to master basic accounting principles which will also be useful at work.  I must interact within a large organization and I mentally train my mind to learn names and meet new people.

I am grateful the hubs supports these endeavors.  He understands the motivation behind them.

I mentally sort through the pieces, years ago, when I watched my mother live with impaired memory loss.   Ironically I had given seminars on dementia as a gerontologist.  I volunteered at my local Alzheimer’s Association in conjunction with my paid job in a non-profit that advocated for the elderly.   My co-workers gave weekly support groups to caregivers and I listened intently as they shared the ups and downs.  Never would we have guessed that my own mother would be diagnosed with it.  That I, the one educated and knowledgeable in this specific field of study, would revert to the caregiver’s denial and blinding anger.  And the guilt.  Lots of guilt.

The memories flood back.  My husband’s shock when he returned from deployment as I told him I placed my mother in a locked board and care facility.  The phone calls  from the facility of her escape.  She had been found in a 7-Eleven convenience store several miles away.  The identification bracelet had not been noticed by law enforcement.

Memory walk 2002 cropThese gaps lay open like the puzzle before me.  I search for the pieces, finally choosing to remember and acknowledge them.  I had compartmentalized this period in my life as I raised my infant and almost two- year old son.  Although I volunteered at the Alzheimer’s Association and had access to a physician, whose book is still prominent in this field; I had not asked for help.  I walked four miles in our local Memory Walk, with my sons,  and raised over a thousand dollars.  I brought people to tears as I taught law enforcement and social services about the symptoms of dementia and the importance of identity bracelets  But never did I acknowledge these things for myself.

I had been too overwhelmed.

I find the few pictures taken during that time; the purple album (whose proceeds partially went to the national Alzheimer’s chapter) purchased years ago and never started.  I coordinate with girlfriends to watch Still Alice onscreen when it is released to the general public in February.   I allow the memories to flood my mind; feeling the emotions as if it were yesterday.  And I found the picture, playfully taken, as my mother held the gorilla.  It was to be sent to the hubs in a memory book of the things he missed while on his six month deployment.  His aviator call sign was monkey boy and the gorilla was meant to make him laugh on the other side of the world.  It is one of the last memories of my mother when she was cognizant.

And with that I can finally pen the thoughts to the high resolution screen, in black and white, in acknowledgment.  I fill in the memory gaps.

monkey lola