Ed Becker interviews Allison - Violin for Vasculitis

Allison: Hi Ed!
Ed:hey there! Welcome and thanks a million for taking time out of your schedule to do this. So let's start at the beginning Allison. Let's get to know you. Where are you from?
Allison: Born and raised in Ohio, Akron area
Ed:ahh, nice place. been there
Allison: Yes! It's fun. Lots of good music going on
Ed:how old are you?.
Allison: I'm 23. Two years out of school
Ed:okay. so before we get into your illness.......let's talk about your gift and talent as a musician
Allison: sure
Ed:When did you first fall in love wtih music..and what inspiried you
Allison: I started at the age of 7. My parents made me practice for at least 5 years before I realized I really liked it so i can't say I was a prodigy or anything like that!
Ed:I see. So you started with violin lessons and then it grabbed you. Tell me about that..you played concerts
Allison: I went to a concert when I was nine... a real virtuoso, only ten years older than me , she has been my inspiration ever since!
Ed:Tell me about that first concert, it must have really inspired you
Allison: I loved it. Dad took me, it was in Canton, just about an hour south , she was just becoming known in the music world
Ed:who was it?
Allison: Leila Josefowicz
Ed:What was it about the concert, the music that captured your imagination
Allison: she's just got such an out-there style, the way she plays reached me even as a kid so flamboyant but also meaningful
Ed:do you remember some of the music she played..the pieces?
Allison: thats the funny thing... I don't! I'm sure i've got a program around here somewhere though. I'm fairly sure she performed a concerto with the Canton Symphony
Ed:her style and performance caught you. At that point how did things change with your committment to the instrument and your lessons
Allison: Well, I wanted to be like her and I tried to mimic her style for so long then one day I woke up, I was 13 and realized I had been enjoying the violin - anyway... there was no "moment", I guess I just sort of learned to love it and by the age of 11 I was playing in the youth symphony...and it went from there.
Ed:which youth symphony
Allison: Akron, then Cleveland both for one year... that was hectic! I was a high school freshman.
Ed:Cool . And you continued after school?
Allison: Oh absolutely . I took classes at the Cleveland Institute (CIM) then got my undergrad at the Oberlin Conservatory its what I do for a living, and I love it!
Ed:So when you say that's what you do for a living you perform ..and or teach too?
Allison: Yes, both... I'm considered "freelance" so I just pick up whatever I can find, though teaching and gigging are what pay the bills.
Ed:what is gigging?LOL
Allison: Hahaha... sorry. Musician lingo. A gig = a one-time job like if I play a wedding, or a performance of some kind
Ed:I thought it was something musical. Oh heck ya, I know about gigging
Allison: nope nope... and yes not the frog kind either ;)
Ed:Okay so this is all of the good stuff in your life But unfort some bad stuff was headed your way too Talk about early onset of vasculitis sympstoms.. etc
Allison: I was 16, junior in high school and I got a bad cold, then bronchitis, then it got really bad... docs called it pneumonia because I had blood in my cough and was extremely fatigued.
Ed:what year would this have been approx
Allison: fall of 2004.
Ed:I see. So did you then go through a battery of tests and doctors? how long after symp did you get dx'ed?
Allison: Oh my goodness, yes. The whole nine yards
Ed::-( common story
Allison: It sure is! Vasculitis is not an easy diagnosis ..nor an easy fix By December I had gotten so sick my parents took me to the ER where they immediately put me on oxygen and gave me a blood transfusion I was experiencing a pulmonary hemorrhage
Ed:yikes
Allison: and probably had been for the last 3 months and we just didnt know it - yeah... scary!
Ed:under the care of a rhuemy at this point?
Allison: Not yet. They sent me home on steroids - yuck
Ed:yuck!
Allison: and Cytoxan, chemo treatment
Ed:but no def dx at this point..
Allison: but it took two more hospital visits and three rounds of different drug therapies as well as a kidney and two lung biopsies
Ed:shhhheessshh
Allison: before I was finally diagnosed with GPA/WG at the Cleveland Clinic ...ya... like I said. the whole 9 yards!
Ed:sounds like 40 yards to me!
Allison: But the initial sickness period was the worst
Ed:what was worst about it
Allison: I was so far gone I had to be sedated for two weeks... they couldnt tell my parents with confidence that I would live - that was awful for them
Allison: I was a high school freshman.
Ed:Cool.And you continued after school?
Allison: Oh absolutely. I took classes at the Cleveland Institute (CIM), then got my undergrad at the Oberlin Conservatory,now its what I do for a living, and I love it!
Ed:So when you say that's what you do for a living you perform ..and or teach too?
Allison: Yes, both... I'm considered "freelance"so I just pick up whatever I can find, though teaching and gigging are what pay the bills.
Ed:what is grigging?LOL
Allison: Hahaha... sorry - Musician lingo. A gig = a one-time job
Ed:OH of course...I thought there was an R in it. During this time, or in your sickness did the fear that you may not survive cross your mind? How do you deal with that reality?
Allison: So maybe 40 yards for me and another 40 for my folks .No. I was too sick to know or care... Only until I had been taken out of the coma for good did Dad let me know how grave the situation was. -anyway... I was 16... didnt really understand the seriousness of it until it was over.
Ed:So you began to get the proper treatment and under care of rheumy . did you start to gradually feel better?
Allison: Oh yeah , Rheumatologist, pulmonologist, and ENT aside from my pediatric doc who was treating me regularly. I went into remission about two years ago: )
Ed:fantastic - So during the dark days..when you were sick and recovering what happened to your music..did you play at all, or take a leave from it
Allison: No, I played. But it was tough . My muscles had atrophied in the coma, it took months until I felt my entire strength back. Thats a rough thing when music had been so familiar to me for so many years.
Ed:did you just play by yourself or were you able to go out and perform on stage at any point during this period
Allison: I eventually rejoined the youth orchestra and went back to classes at CIM
Ed:sweet
Allison: it helped having supportive friends... yes, theres only been one relapse since my diagnosis, and that was my freshman year of college
Ed:How are your parents doing now. They must be so relieved and so proud of your strength
Allison: They are! They come to my concerts too
Ed:So finally let's talk about your current tour. Tell me how the whole thing began..to do this tour. what inspired you to do it? How long has this tour gone on?
Allison: All the advocates I've heard from are not just advocates... they have done something amazing . Sure, I played music, but I needed more than that . so a friend of mine suggested I be "the first violinist to visit all 50 states" While I can't prove that, I DID take off with his idea
Ed:wow
Allison: and added both awareness and fundraising aspects to the concert idea.
Ed:So when did it kick off..the tour
Allison: This conversation took place in January... by May 1st I had set up my first recital right here in my hometown of Cuyahoga Falls, Ohio
Ed:and how far along int he tour are you? How many more play dates?
Allison: My Pittsburgh concert next week will be State Number 3 (event no. 5 though)
Ed:holy cow..you still have a long way to go. So this tour goes well into next year.
Allison: oh definitely - I set my goal of 4 years to finish it off: )
Ed:beautiful . so tell me about the performance. a bit. you come out and play and you also educate the audience right? about Vasculitis
Allison: Yes! we call them 'informances" (an informational performance)
Ed:what do you tell them - great name by the way . shhhheessshh
Allison: before I was finally diagnosed with GPA/WG at the Cleveland Clinic .ya... like I said. the whole 9 yards!
Ed:sounds like 40 yards to me!
Allison: But the initial sickness period was the worst
Ed:what was worst about it
Allison: I was so far gone I had to be sedated for two weeks... they couldnt tell my parents with confidence that I would live, that was awful for them
Ed:during this time, or in your sickness did the fear that you may not survive cross your mind? How do you deal with that reality?
Allison: So maybe 40 yards for me and another 40 for my folks. No. I was too sick to know or care... Only until I had been taken out of the coma for good did Dad let me know how grave the situation was.
... I was 16... didnt really understand the seriousness of it until it was over.
Ed:So you began to get the proper treatment and under care of rheumy
Allison: so I play, then tell my story, then play again, then give them a bit of info about vasculitis, then wrap it up with an informal Q&A
Ed:so neat.
Allison: Of course, I'm not a doc myself, so you can imagine the tricky questions that get thrown my way!
Ed:what is best question you been asked so far
Allison: A German woman asked me in a very thick accent if I endorsed herbal remedies for vasculitis that was weird...
Ed:OH NO - how did you answer
Allison: ha! I avoided the question in a sense...
Ed:smart lady!
Allison: I told her that no vasculitis patient is the same, we all have very very different treatments that work for us individually...and since i am recently in remission I was not willing to try anything other than good hard drugs! lol
Ed:so had it not been for the illness how would you be different in terms of how you perform and your outlook on music - did Vasc change your view of life, how you approach your craft?
Allison: oh absolutely - every day I can pick up the violin Im happy to be healthy and able
Ed:deeper appreciation?
Allison: yes sir! its not just something I do any more. it's a privilege the illness could have done horrible things to my body... but instead, I am alive well and practicing: ) but the biggest thing is sharing music with others with vasculitis. it's a way of connecting with them I never had before
Ed:very last one...any advice or hope that ou can give to those people, patients who are struggling - some of them have lost their ability to do things they loved, what can you say to them to give hope
Ed:and how far along int he tour are you? How many more play dates?#
Allison: My Pittsburgh concert next week will be State Number 3 (event no. 5 though)
Ed:holy cow..you still have a long way to go. So this tour goes well into next year.
Allison: oh definitely - I set my goal of 4 years to finish it off: )
Ed:beautiful
Ed:so tell me about the performance. a bit. you come out and play and you also educate the audience right? about Vasc
Allison: Yes! we call them 'informances"
Allison: (an informational performance)
Ed:what do you tell them
Ed:great name by the way
Allison: so I play, then tell my story, then play again, then give them a bit of info about v, then wrap it up with an informal Q&A
Ed:so neat.
Allison: Of course, I'm not a doc myself, so you can imagine the tricky questions that get thrown my way! yes... I feel so lucky... I know that others are not but the dark times pass and family and friends mean more than anything you could do for yourself, ever so find something you love... music, art, gardening, whatever you enjoy most and do it with someone whose company you enjoy most. that lifts my spirits every time!
Ed: I hope you can autograph a copy of your CD for me.
Allison: Ha! Sure Ed, when I record one ;)
Ed:LOL, you will - I will see you at the performance on 15th...Dr. Kathy Mckinnon will be there
Allison: Looking forward to seeing you and others at the concert next Thursday too! Yes!
Ed:we will man the table for you
Allison: thats so great... I cant thank you enough for being a part of this.
Ed:take care and peace!

This story had originally been published on the Pan-Support-Website of Ed Becker. Thank you for letting me publish it here.