Vlog Day 29 - Wheelchair Life + Multiple Sclerosis + Loss Of Independence



Life With MS Can Have 'Beautiful Limitations'

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Please allow me to begin this post by saying that I find nothing about living with multiple sclerosis to be a “good thing”, a “blessing” in any way or something for which I am “thankful”. MS did not “give” me anything positive, I am not a “better person” because of this disease and I would give back and relearn every lesson I have gained ten times over if I could matriculate in another of life’s hard knocks courses.

I say those things - repeat them really, as I’ve said themover and over again- because what I’m about to write about might sound a little Pollyanna to those who do not know me as an MS Pragmatist (I don’t see the glass as half-empty or half-full; I just try to figure out how I can live on half a glass…)

In aninterviewI heard over the weekend, a young, Spanish jazz musician was talking about her use of the traditional gaita (pronounced "GY-tah"), a version of the bagpipe from her native region of Galicia, in her music.

Cristina Patospoke of trying to record the famous Miles Davis contemplative and (I’ll attest to it as a former trumpet player) difficult composition, “Blue &Green”,usinganinstrumentwhichjustdoesn’thaveallofthenotesDavis’trumpetcouldproduce.

Patospokeofthe“constantchallengeIhavewithmyinstrument…”andBOYcouldn’tIunderstandthat.Notasaformerhornsman,butratherasapersonlivingwithadiseasethatrobsthecontrolofmyinstrument…mybody.

AndthenshesaidsomethingwhichhashadmegoingbacktolistentotheinterviewoverandoveragainsinceSundaymorning.

Shespokeofher“…passionabouttheinstrumentbecauseithassomany(andthiswasthehookforme)beautifullimitationsthatreallymakeyouworkhardertogetthingsdone”

That’sitinanutshellforme;thislivingwithMSthing.

Myinstrument–mybody–haslimitationsnowthatitdidn’thavebefore.Thesearenotthesimplelimitationsthatagewillplaceonaperson;MShasnibbled,bit,strippedandrippedawaymanyofthenotesIoncehadinmyscales(thatthisparticularpieceofmusicisatextbookexampleofModelJazz–musicmadeupofscaleprogressionsratherthanchords–alsomadethisformermusicianwithMSsmilealittlefortheanalogy).MShasnot,however,takenawaymydesiretomakelife’smusic.

Thatitismoredifficulttodothethingsthatwereonceeasy(andstillshouldbe),orthatIcannotdothematallbutstilltrylendsakindofsweetnesstothosethingsstillpossible;especiallytothetasksoflifeonceexecutedwithoutthoughtoreffortbutnowrequiregreatconcentrationandevenstruggle.Succeedorfailatthetasksathand,Irevelinthetryingandthesweetnessofthelimitations.

Maybe,particularlyasitisInaugurationDay,youwillallowmetoquoteTheodoreRoosevelt(surelynoPollyanna)toclosethisblog;

“Itisnotthecriticwhocounts,notthemanwhopointsouthowthestrongmanstumbled,orwherethedoerofdeedscouldhavedonethembetter.Thecreditbelongstothemanwhoisactuallyinthearena;whosefaceismarredbydustandsweatandblood;whostrivesvaliantly,whoerrsandcomesshortagainandagain;whoknowsthegreatenthusiasms,thegreatdevotions,andspendshimselfinaworthycause;who,atthebest,knowsintheendthetriumphofhighachievement; and who at the worst, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who know neither victory nor defeat”

Amen, Mr. President… Amen.

Wishing you and your family the best of health.

Cheers

Trevis

You can also follow me via ourLife With MS Facebook page, onTwitter, and in our group onMS Connection.org. Also, check out our bi-monthlyMS blog for the United Kingdom, look for our very special new monthlyblog for the National MS Society, and don’t forget to check outTrevisLGleason.com.

Last Updated:1/22/2013
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Date: 07.12.2018, 20:42 / Views: 43191