Finding My Purpose in Speaking About Scleroderma to MSU Medical Students


On Friday, July 28th, 2017,​ ​I​ ​was​ ​asked​ ​to​ ​speak​ ​on​ ​a​ ​panel​ ​alongside​ ​four​ ​others​ ​to​ ​over​ ​100​ ​Michigan​ ​State University​ ​second​ ​year​ ​medical​ ​students​ ​regarding​ ​scleroderma​ ​and​ ​how​ ​it​ ​affects​ ​our​ ​lives​ ​as​ ​a person,​ ​as​ ​well​ ​as​ ​emotionally,​ ​physically,​ ​socially ​ ​as​ ​a​ ​patient​ ​who​ ​sees​ ​doctors​ ​for​ ​a chronic​ ​illness.

To​ ​be​ ​honest​, ​I​ ​didn’t​ ​really​ ​know​ ​if​ ​I​ ​was​ ​going​ ​to​ ​do​ ​the​ ​disease​ ​justice.​ ​These were​ ​second​ ​year​ ​med ​students.​ ​Of​ ​course​ ​they​ ​are​ ​super​ ​smart​ ​and​ ​would​ ​most​ ​likely​ ​ask​ ​me​ ​all kinds​ ​of​ ​questions​ that​ ​I​ ​would​ ​have​ ​no​ ​idea​ ​whatsoever​ about ​the​ ​correct​ ​answer​​ ​and​ ​would, in​ ​turn,​ ​make myself​ ​look​ ​like​ ​an​ ​ill-informed​ ​advocate​ ​for​ ​this​ ​disease.​​ ​OK,​ ​worst​ ​case​ ​scenario!​ ​But​ ​still​, ​it was​ ​a​ ​very​ ​real​ ​possibility!

 

​I​ ​had​ ​known​ ​I​ ​was​ ​going​ ​to​ ​be​ ​speaking​ ​on​ ​this​ ​special​ ​panel​ ​since March.​ ​Mind​ ​you,​ ​I​ ​of​ ​course​ ​waited​ ​until​ ​the​ ​week​ ​of​ ​to​ ​actually​ ​start​ ​researching​ ​and​ ​studying my own disease!​ ​Here​ ​I​ ​was,​ ​a​ ​week​ ​before​ ​the​ ​panel,​ ​giving​ ​myself​ ​a​ ​refresher​ ​course​ ​on my​ ​disease.​ ​Reminding​ ​myself​ ​about​ ​the​ ​specific​ ​blood​ ​tests​ ​one​ ​gets​ ​when​ ​first​ ​diagnosed​ ​with scleroderma,​ ​and​ ​familiarizing​ ​myself​ ​with​ ​the​ ​new​ ​kinds​ ​of​ ​medical​ ​treatments​ ​that​ ​are​ ​being given​ ​to​ ​scleroderma​ ​patients.​ ​Trust​ ​me,​ ​the​ ​irony​ ​of​ ​it​ ​all​ ​was​ ​not​ ​lost​ ​on​ ​me! When​ ​Friday​ ​actually​ ​came​ ​I​ ​thought​ ​to​ ​myself​, ​”Amy,​ ​you​ ​are​ ​as​ ​ready​ ​as​ ​you​ ​are​ ​going​ ​to​ ​get!”

We​ ​arrived​ ​on​ ​campus​ ​at​ ​East​ ​Fee​ ​Hall​ ​at​ ​9:30​ ​a.m.​ ​Because​ ​of​ ​the​ ​size​ ​of​ ​the​ ​campus​ ​and​ ​all of​ ​the​ ​different​ ​halls,​ ​my​ ​dad​ ​brought​ ​my​ ​light​weight​ ​chair​ ​to​ ​wheel​ ​me​ ​around.​ ​So​ ​into​ ​the wheelchair​ ​I​ ​went​ ​and​ ​away​ ​we​ ​went​ ​to​ ​the​ ​side​ ​door​ ​of​ ​the​ ​building.​ ​

Just​ ​a​ ​little​ ​side​ ​note​ ​for you: ​As​ ​we​ ​were​ ​going​ ​into​ ​the​ ​building​, ​my​ ​dad​ ​let​ ​go​ ​of​ ​my​ ​wheelchair​ ​to​ ​grab​ ​the​ ​doors​ ​to​ ​open them​ ​and​ ​neglected​ ​to​ ​put​ ​the​ ​brakes​ ​on​ ​my​ ​wheelchair.​ ​The​ ​next​ ​thing​ ​I​ ​knew​ ​I​ ​was​ ​rolling down​ ​the​ ​driveway​ ​of​ ​the​ ​East​ ​Fee​ ​Hall​ ​towards​ ​the​ ​street.​ ​In​ ​my​ ​most​ ​calm​ ​voice​ ​I​ ​called​ ​for my​ ​dad,​ ​who​ ​in turn​ ​let​ ​out​ ​a​ ​couple​ ​choice​ ​swear​ ​words​ ​and​ ​grabbed​ ​my​ ​wheelchair​ ​handles before​ ​I​ ​went​ ​to​ ​play​ ​in​ ​traffic!​

Finally​​ ​​we​​ ​​make​​ ​​into​​ ​​the​​ ​​building​​ ​​and​​ ​​meet​​ ​​up with​​ ​​the​​ ​​other​​ ​​panel​​ ​​members​​ ​​and​ ​a​​ ​​lovely​​ ​​woman​​ ​​who​​ ​​was​​ ​​the​​ ​​coordinator​​ ​​for​​ ​​the​​ ​​day.​​ ​​We​ ​were​ ​given​​ ​​about​​ ​​10​​ ​​seconds​​ ​​to​​ ​​introduce​​ ​​ourselves,​​ ​​say​​ ​​hello​​ ​​and​​ ​​then​​ ​​we​​ ​​were​​ ​​split​​ ​​up​​ ​​and​ shown​ ​to​​ ​​our​​ ​​classrooms​​ ​​where​​ ​​we​​ ​​would​​ ​​be​​ ​​speaking​​ ​​for​​ ​​the​​ ​​first​​ ​​hour.​​ ​​Each​​ ​​of​​ ​​the​​ ​​other​ ​patients​ ​were​​ ​​paired​​ ​​up​​ ​​and​​ ​​put​​ ​​in​​ ​​classrooms.​​ ​​I,​​ ​​being​​ ​​the​​ ​​lucky​​ ​​duck​​ ​​​I​​ ​​am,​​ ​​was​​ ​​put​​ ​​in​ ​class​​​​room​ ​E105​​ ​​by​​ ​​myself.​​ ​​Thank​​ ​​goodness​​ ​​I​​ ​​had​​ ​​my​​ ​​dad​​ ​​with​​ ​​me​​ ​​for​​ ​​support.​​ ​​Being​​ ​​nervous​ ​is​​ ​​so​​ ​​foreign​ ​to​​ ​​me.​​ ​​I​​ ​​can​​not​​ ​​remember​​ ​​a​​ ​​time​​ ​​when​​ ​​I​​ ​​have​​ ​​ever​​ ​​been​​ ​​nervous.​​ ​​Especially​​ ​​about​ ​public​ ​speaking!​​ ​​I​​ ​​took​​ ​​it​​ ​​in​​ ​​college​​ ​​and​​ ​​aced​​ ​​the​​ ​​class,​​ ​​for​​ ​​cripes​​’ ​​sake!

As​ ​​I​​ ​​entered​​ ​​my​​ ​​classroom​​ ​​a​​ ​​few​​ ​​students​​ ​​were​​ ​​there​​ ​​and​​ ​​more​​ ​​and​​ ​​more​​ ​​were​​ ​​walking​​ ​​in​​ ​​to hear​​ ​​my​​ ​​lecture.​​ ​​I​​ ​​met​​ ​​the​​ ​​professor​​ ​​of​​ ​​the​​ ​​class.​ ​He​ ​was​​ ​​so​​ ​​nice​​ ​​and​​ ​​sweet.​​ ​​He​​ ​​ran​​ ​​through what​​ ​​the​​ ​​students​​ ​​had​​ ​​learned​​ ​​and​​ ​​what​​ ​​was​​ ​​expected​​ ​​of​​ ​​them​​ ​​to​​ ​​know​​ ​​about​​ ​​scleroderma,​​ ​​and I​​ ​​was​​ ​​surprised​​ ​​to​​ ​​hear​​ ​​they​​ ​​really​​ ​​only​​ ​​knew​​ ​​the​​ ​​bare​​ ​​minimum.​​ ​​

Then​​ ​​it​​ ​​was​​ ​​time​​ ​​for​​ ​​me​​ ​​to start.​​ ​​I​​ ​​introduced​​ ​​myself​​ ​​and​​ ​​explained​​ ​​where​​ ​​I​​ ​​was​​ ​​from.​ ​I​ ​told​ ​them​​ ​​how​​ ​​old​​ ​​I​​ ​​was​​ ​now​ ​​and​ ​how​​ ​​long​​ ​​I​​ ​​had​ ​been​​ ​​diagnosed​​ ​​with​​ ​​scleroderma.​​ ​​After​​ ​​those​​ ​​few​​ ​​short​​ ​​sentences​​ ​​the​​ ​​words​ ​just​​ ​​started​​ ​​to​ ​flow​​ ​​out​​ ​​of​​ ​​my​ ​mouth​​ ​​like​​ ​​a​​ ​​lazy​​ ​​river.​​ ​​It​​ ​​was​​ ​​easy!​​ ​​I​​ ​​just​​ ​​told​​ ​​the​​ ​​students​​ ​​my​ story.​​ ​​

How​​ ​​I​​ ​​was​​ ​​only​​ ​​19​ ​years​ ​old​ ​when​​ ​​I​​ ​​was​​ ​​diagnosed.​​ ​​How​​ ​​growing​​ ​​up​​ ​​into​​ ​​an​​ ​​adult​​ ​​with​ ​this​​ ​​disease​​ ​​has​​ ​​been​​ ​​difficult​,​ ​frustrating​ ​and,​ ​​at​​ ​​times,​ ​devastating.​ ​I​ ​spoke​ ​of​ ​how​ ​not​ ​every day of​ ​living​ ​with​ ​scleroderma​ ​is​ ​sad, ​and​ ​filled​ ​with​ ​pain.​ ​I​ ​told​ ​them​ ​about​ ​my​ ​support​ ​group​ ​on Facebook​ ​I​ ​put​ ​together​ ​and​ ​ ​how​ ​I​ ​have​ ​met​ ​so​ ​many​ ​amazing,​ ​talented,​ ​kind​-​hearted people​ ​through​ ​the​ ​support​ ​group​ ​and​ ​through​ ​my​ ​own​ ​personal​ ​site​ ​called​ ​”Staying​ ​Alive​ ​with Scleroderma.”​​ ​​I​ ​spoke​ ​about​​​ ​​always​​ ​​trying​​ ​​to​​ ​​keep​​ ​a​ ​​positive​ ​attitude,​ ​and​ ​before​​ ​​I​​ ​​knew​​ ​​it​​, ​​my​ ​hour​​ ​​was​​ ​​up​​ ​​and​ ​I​​ ​​wasn’t​​ ​​even​​ ​​halfway​​ ​​through​​ ​​with​​ ​​my​​ ​​story.​​ ​​​​ ​​

Now​​ ​​the​​ ​​rest​​ ​​of​​ ​​the​​ ​​scleroderma​ ​panel​​ ​​joined​​ ​​me​ ​in​​ ​​my​​ ​​classroom​​ ​​and​​ ​​we​​ ​​answered​​ ​​question​​ ​​after​​ ​​question​​ ​​from​​ ​​the​​ ​​medical students,​​ ​​the​ ​professors​​ ​​and​​ ​​the​​ ​​faculty.​​ ​​I​​ ​​even​​ ​​answered​​ ​​a​​ ​​few​​ ​​questions​​ ​​from​​ ​​the​​ ​​panel​ ​members​ ​themselves.​​ ​​All​​ ​​in​​ ​​all​​, ​​the​​ ​​first​​ ​​half​​ ​​of​​ ​​the​​ ​​day​​ ​​went​​ ​​extremely​​ ​​well​​ ​​and​​ ​​I​​ ​​actually​​ ​​was​ ​excited​​ ​​to​ ​start​​ ​​the​​ ​​second​​ ​​lecture​​ ​​and​​ ​​panel​​ ​​discussion​​. I​​ ​​would​​ ​​have​​ ​​skipped​​ ​​lunch​​ ​​but​​ ​​we​ ​had​​ ​​to​ ​eat​ ​and​ ​take​ ​our​ ​meds,​ ​darn​ ​chronic​ ​illness!​

​By​​ ​​the​​ ​​end​​ ​​of​​ ​​the​​ ​​second​​ ​​and​​ ​​final​​ ​​panel​​ ​​I​ was​​ ​​a​​ ​​pro!​​ ​​I​​ ​​really​​ ​​thought​​ ​​I​​ ​​did​​ ​​well​​ ​​considering​​ ​​I​​ ​​had​ ​never​​ ​​done​​ ​​anything​​ ​​of​ ​that​ ​magnitude ​thus​​ ​​far.​​ ​​The​​ ​​whole​​ ​​day​​ ​​was​​ ​​so​​ ​​enjoyable​​ ​​for​​ ​​not​​ ​​only​ ​myself,​​ ​​but​​ ​​my​​ ​​dad​​ ​​had​​ ​​a​​ ​​blast​​ ​​too!

group of people giving a scleroderma talk at a university
Scleroderma panel at MSU

For​​ ​​the​​ ​​past​​ ​​five ​​years​​ ​​or​​ ​​so​​ ​​now,​​ ​​I​​ ​​have​​ ​​been​​ ​​patiently​​ ​​waiting​​ ​​to​​ ​​figure​​ ​​out​​ ​​what​​​​ ​​my​​ ​​purpose​​ is ​​in life.​​ ​​Why​​ ​​was​​ ​​I​​ ​​given​​ ​​this​​ ​​disease​​ ​​and​​ ​​what​​ ​​am​​ ​​I​​ ​​supposed​​ ​​to​​ ​​be​​ ​​doing​​ ​​with​​ ​​my​​ ​​life​​ ​​since​​ ​​my original​​ ​​plan​​ ​​was​​ ​​blown​​ ​​to​​ ​​smithereens​​ ​​by​​ ​​scleroderma?​​ ​​Getting​​ ​​up​​ ​​in​​ ​​front​​ ​​of​​​​ ​​100​​ ​​plus​​ ​​people and​​ ​​educating​​ ​​them​​ ​​about​​ ​​scleroderma,​​ ​​my​​ ​​disease –​​ ​​disease​​ ​​I​​ ​​live​​,​​ ​​breathe​​ ​​and​​ ​​fight​​ every day​​ – ​​was​​ ​​so​​ ​​invigorating​​ ​​for​​ ​​me.​​ ​​It​​ ​​opened​​ ​​my​​ ​​eyes​​ ​​to​​ ​​a​​ ​​whole​​ ​​other​​ ​​side​​ ​​of​​ ​​myself​​ ​​I​​ ​​did​​ ​​not know​​ ​​I​​ ​​was​​ ​​capable​​ ​​of!​​ ​​I​​ ​​can​​ ​​do​​ ​​this!​​ ​​I​​ ​​am​​ ​​an​​ ​​educator,​​ ​​an​​ ​​advocate,​​ ​​a​​ ​​counselor,​​ ​​a​​ ​​listener and​​ ​​a​​ ​​leader!​​ ​

Speaking​​ ​​the​​ ​​truth​​ ​​about​​ ​​scleroderma​​ ​​is​​ ​​something​​ ​​I​​ ​​definitely​​ ​​am​ ​making​​ ​​a​ ​priority​​ ​​in​​ ​​my​​ ​​life​​ ​​from​​ ​​now​​ ​​on.​​ ​​I​​ ​​fell​​ ​​in​​ ​​love​​ ​​with​​ ​​sharing​​ ​​my​​ ​​truth​​ ​​and​​ ​​helping​​ ​​others – ​​be it​​ ​​medical​​ ​​students,​​ ​​caregivers ​​or​​ ​​total​​ ​​strangers​​ ​​to​​ ​​the​​ ​​disease​​ – ​​learn​​ ​​about​​ ​​scleroderma​​ ​​and understand​​ ​​that it’s​​ ​​not​​ ​​contagious,​​ ​​it​​ ​​can​​ ​​be​​ ​​treated​​ ​​and​​ ​​you​​ ​​can​​ ​​live​​ ​​a​​ ​​happy​​ ​​life​​ ​​for​​ ​​many years​​ ​​with​​ ​​this​​ ​​disease​​. This is​​ ​​something​​ ​​I​​ ​​know​​ ​​I​​ ​​can​​ ​​do,​​ ​​and​​ ​​I​​ ​​know​​ ​​now​​ ​​it​ ​is​ ​​what​​ ​​I​​ ​​was​​ ​​put​​ ​​on​​ ​​this earth​​ ​​here​​ ​​with​​ ​​scleroderma​​ ​​to​​ ​​do.​​ ​​Now​​ ​​I​​ ​​just​​ ​​need​​ ​​to​​ ​​figure​​ ​​out​​ ​​where​​ ​​exactly​​ ​​to​​ ​​start!!!

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