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Ldp07 News

Ldp07 News

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Published by Dew Nada

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Published by: Dew Nada on Oct 13, 2009
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10/12/2009

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hen I met Denlow andMelissa, all I knew aboutamyotrophic lateral sclerosis (ALS),the progressive neurodegenerativedisease that aects nerve cells in thebrain and spinal cord, I’d learned romthe deeply moving book
Tuesdays withMorrie.
Written by Mitch Albom, aDetroit sportswriter, the book relatesweekly meetings he had with hisormer proessor, who was aictedwith this disease, best known as“Lou Gehrig’s disease.”Melissa contacted the Living/DyingProject requesting spiritual supportor her husband. I initially visited
winter 2007
A Graceful Journey
them in my role as Intake Coordina-tor or the Project, but it was clearrom this meeting that I would workwith them mysel rather than reerthem to another volunteer. Throughweekly meetings and intimate con-versations over subsequent months,I was gradually drawn into the circleo amily and riends who are parto their journey, a act or which I’mmost grateul. With their permission,I’d like to share what I’ve discoveredthus ar.I learned rom the generosity o Melissa and Denlow toward one an-other that, despite the unrelenting
W
nature o this disease with its right-ening reputation, it is possible to keepone’s heart open, and to maintain notonly dignity, but also humor. Melissa,the gatekeeper or this unoldingadventure, balances raising a youngdaughter, maintaining a ull-time jobat home and managing the never-ending challenges o insuring careor her beloved husband. Whetherinding a suitable care provider,arranging a van to take the amily toan event or a doctor’s appointment,or securing one o the many pieceso high-tech equipment necessary tomake Denlow’s lie easier, Melissais on top o it. She is the executiveassistant everyone wishes they hadin their lie!Denlow, the warmhearted ellow inthe photo above, revels in his quirkyview o reality that eatures a lielongaection or clowns and Halloween.(I haven’t actually seen the oppyshoes and red nose, but I’ve beenassured he owns them both!) He andMelissa have an unerring capacity orfnding humor even in the most chal-lenging o circumstances.I recall the day Melissa told thestory o a dramatic accident the pre-ceding week. A recently hired aideorgot to lock the mechanism usedto ease Denlow over the bathtub orhis shower. The device toppled over,wedging Denlow between the bath-tub and an adjacent cabinet. It was atraumatic moment as Melissa and theaide tried to extricate Denlow.
 
 2
Later, Denlow spoke o eeling panic at being completely out o control, yet,as Melissa told the story, a smile lited his lips. I knew instantly that despitethe trauma o the moment, he was seeing the humor in the whole episode,something out o a Marx Brothers movie or a Christopher Moore novel perhaps.He confrmed my suspicion and we had a brie chuckle.When I observed the importance o humor in their relationship, Melissa re-called her mother and her telling Denlow that i he didn’t behave, they intendedto drop him o in his wheelchair beneath a reeway overpass. I couldn’t helpbut smile at the image and suggested a sign that read, “Will Work or Food.”My time with Denlow consists o both light and serious moments. We sharehumor, but at heart we’re exploring Denlow’s relationship with his illnessthat is gradually diminishing his capacity to engage with lie and amily. Canhe stay open as his body ails him? The question remains beore us as the journey continues.Denlow turned 42 years old in October, celebrating the occasion with hisdaughter Hannah whose birthday is eleven days beore his. Hannah was aew months old when he and Melissa received the defnitive diagnosis o ALS.Denlow observed to me during one o our meetings that it has not been lost onhim that as his daughter learned to walk, he has been bound increasingly to hiswheelchair. And as she learned to talk, speech became ever more challengingor him. At one point, he reerred to this disease as a “cruel joke,” observingthat he retains all his senses, as well as his mental acuity, yet his body makesit impossible or him to act. From the Sideline, one o the poems he sharedwith me early in our time together poignantly tells the reality o this diseaseas he experiences it. It brought tears to my eyes.
From the Sideline
From the sidelineFrom the benchFrom my chairFrom the other roomI watch and listenYour delight is mineAnd my sadness tooYour laughter raises me upAnd drags me downI’m happy for the pleasure andthe comfort you’re givenAnd I’m envious because it’s notme giving themI sit wishing it could be mewho ticklesWishing it could be me whorough-housesLifting you up, twirling youaroundMe, who kisses you, huggingyou tightMe, who you snuggle whilereading a bookWhen you fall, I wish I couldpick you upTo kiss your scrapes and bruisesI dream of carrying you piggybackOr over my shoulder like a sackof potatoesHow I wish I could show you thewonder of crayonsThe miracle of paint, the imaginationof arts and craftsShow you the worlds of magicthat await youYet I must sit disabled, I watchfrom my chairI listen from where I lie in theother roomI watch you play from the benchI wish I could do more thancheer from the sideline
(It was only when I reviewed this photo later on the day it was taken thatI noticed Denlow’s hand, immobile on the arm o his wheelchair, as Hannahreached up to give him a tender kiss. I knew immediately the photo belongswith this poem.)
 
 3 
Denlow initially requested that Melissa do everything in her power to extendhis lie, even i only an eyelash utters. Ater a three-year journey, aced withrepeated losses o capacity and related reedom, he is now more ocused onquality o lie than quantity. He also defnes healing as something more thanphysical. During our many conversations, Denlow has spoken o what he islearning along the way. Impatience has fnally yielded to gratitude. Despite ahistory o procrastination, he understands that it is better not to put o whatcan be done today, including loving those around him.His busy daily regimen o rising, bathing, dressing, eating, working withmassage therapists, a psychotherapist, and an acupuncturist, as well as visi-tors such as me, demands considerable energy as well as the help o his aide.Even talking is a whole-body exercise requiring coordinated management o limited breathing, a exing diaphragm, and a tongue and lips that don’t alwaysrespond aithully. I commented one day on the vast amount o energy heexpends in speaking and he told me that
everything
he does takes eort.Yet despite the challenges that deepen as time goes on, Denlow continuesto express himsel through poetry he shares with amily and riends. Healso shares a visit each week with a close riend to a local movie theatre, thecontinuation o a lielong passion or movies. O course, the journey is madepossible only because o his wheelchair and the services o a local transporta-tion company.At his birthday celebration, I met the circle o riends who love Denlow andhis amily. They’ve long appreciated his sense o humor and idiosyncraticview o the world. Last year, when he was unable to decorate their home orHalloween, a avorite pastime o his, riends came and did it with/or him.The occasion was documented by a collection o still photos o each personmaking unny aces that became a large print, now hanging in their home.Melissa told me one day that although Denlow worked in an ofce, dressed ina shirt and tie, he painted his toenails as a statement o his inherent reedom.He chuckled at the realization that he alone knew he was wearing brightlycolored toenails as he sat through business meetings. Even the name thatso conused me beore I met him announces his rebellious streak. His givenname is Dennis Enlow, but when he was sent to the principal’s ofce duringseventh grade the note was always headed with his name, “D. Enlow.” A riendpicked up the nickname and he’s held onto it his whole lie.So is it irreverence that makes possible such a graceul journey throughgrowing incapacity and an end understood by all? A bit o gallows humorhelps, perhaps? No doubt, though it is love and good will, proound respectand trust that inorm everything. You can laugh in the ace o challenge whenthe people with whom you laugh care deeply or your well-being. And beingwell has nothing to do with a long lie. Melissa told me one aternoon that hercommitment throughout this journey has been to live it with integrity. Thatdoesn’t mean perectly. It does mean doing it with an open heart that extendsto the whole community that surrounds their amily and oers support.Perhaps it is not possible to know how they will reach the end o this journey,but it is clear these lovely people have been touched by grace, which they sharewith everyone around them, including me. Thank you, Denlow, or inviting meto share your journey. Thank you, Melissa, or being the remarkable womanyou are. However this unolds, I plan on being there with you both.—Curtis Grindahl
The body passes away. Everything is impermanent except the love o God.
—Maharaji
Thus shall ye think o this eeting world: A star at dawn, a bubble in a stream, A ash o lightning in a summer cloud, A ickering lamp, a phantom, and a dream.
—Buddha, in the Diamond Sutra

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