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!!!

We want to hear your story. Become a Mighty contributor here.


Find this story helpful? Share it with someone you care about.


Related to Scleroderma

Why I Feel Lucky Despite My Battle With Scleroderma

I​ ​have​ ​spent​ ​the​ ​majority​ ​of​ ​my​ ​adult​ ​life​ ​sick.​ ​When​ ​I​ ​say​ ​sick​ ​I​ ​am​ ​not​ ​speaking​ ​about​ ​a common​ ​cold​ ​or​ ​even​​ ​appendicitis.​ ​My​ ​last​ ​year​ ​as​ ​a​ ​teenager​ ​I​ ​was​ ​diagnosed​ ​with​ ​a​ ​rare, chronic,​ ​autoimmune​ ​disease​ ​called​ ​systemic​ ​scleroderma.​ ​Scleroderma is​ ​an​ ​autoimmune​ ​disease​ ​that​ ​affects​ ​the​ ​skin​ ​and​ ​internal​ ​organs.​ [...]
woman's entire hand and wrist wrapped heavily with bandages

How NY State Laws Are Preventing Me From Getting Pain Medication for Scleroderma

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community. I​ ​have​ ​been​ ​living​ ​with​ ​a​ ​rare​ ​chronic​ ​autoimmune​ ​disease​ ​called​ ​systemic scleroderma​ ​for​ ​a​ ​little​ ​over​ ​16​ ​years​ ​now.​ ​Since​ ​my​ ​diagnosis​ ​in​ ​2001​ ​I​ ​have been​ [...]
bob saget

Bob Saget: Why I'm Using Comedy to Fight Scleroderma

Bob Saget is an acclaimed actor, comedian, director, writer and producer. Among many other television shows and movies, he wrote and directed the telefilm For Hope, chronicling his sister’s struggle with scleroderma. Bob joined the Scleroderma Research Foundation’s Board of Directors in 2002. We spoke to Bob on the red carpet of their 30th Annual [...]
woman smiling in a hospital gown with an IV in her neck

When I Was Forced to Face the Reality of Permanent Disability

“I do not want my picture taken in my wheelchair please!” were the first words out of my mouth as we started the Local Stepping Out for a Cure Scleroderma Walk a few weeks ago. I know it sounds extremely vain of me to not want a simple photograph snapped of me, but in my [...]