Bonus Round Patient Pages
Encouraging patient/doctor/caregiver communications

 

 

VERY First Letter back when Katie and Sparky first met:

Fall of 1998.

dear sparky,

"We will always be connected to each other" "We will always be connected to each other" --The TLS Creators

An Essay

By Katie Hess

When I was a freshman in High School my English teacher, on the first day of school, told us to write about an autobiographical incident in our lives... I wrote about the day the doctor told me about my disease. This essay is really based on that idea because now I have a new autobiographical incident to write about... the day I saw "The Last Session" and how it affected me.

First some background on me, when I was seven I was diagnosed with a pretty severe case of ulcerative colitis which is basically ulcers of the colon. To a layperson it does not sound too intense because many people suffer from ulcers, but my condition is more than that... severe bleeding from the ulcers left me anemic and almost in need of blood transfusions because of my low white blood cell count.

I developed a severe case of arthritis as a complication of my illness and I spent most of my childhood in and out of doctor's offices and hospitals. That same year I had my first surgery and I've had four since then... it's a pretty basic procedure that is pretty much a surgical check up to see how I'm doing and to make sure that I don’t develop cancer because my illness gives me a higher risk of developing colon cancer (four times that of any normal person).

The show "The Last Session" not only touched me, but further reiterated the fact that no matter how alone I felt, I was never alone because even though Gideon is suffering from HIV which has developed into full-blown AIDS... the experiences of isolation, friendly fire and wanting to surrender are universal and can be felt and understood by any sick person.

From the opening sequence I knew what Gideon was going through, when I was ten I had to battle feelings of wanting to surrender. The word "suicide" was never used because at that young age I didn’t know that there was a name attached to it... I just knew that I wanted to die because living had become a struggle that I wasn't sure if I was going to win.

I have never cried during the opening sequence of a show and I only realized that I was crying when the tears landed in my lap. From that moment on I knew this show was unlike anything I’d ever seen before in my life.

Even though the show is peppered with incredibly humorous moments... the underlying theme of suicide and pain never left the back of my mind. When "The Group" started and the lines

"And the sickest ones were scaring me / The youngest made me sad The ones who looked pathetic-- / Just made me feel pathetic / There was one who seemed to know a lot / One who had no clue / One who spoke of vitamins-- / Who said we needed vitamins / And as they said what they were going through / I cried..."

[From "The Group" 1998 by Steve Schalchlin. See No Evil/Lil Shack o' Tunes ASCAP]

And I cried... because I remembered the second time I went to the hospital and I met other kids like me. Kids that didn't necessarily have what I had, but who were all sick in some way... and those lines hit home.

I remember how the cancer ridden patients scared me because every time I went to the hospital my doctor never failed to tell me that I could develop cancer.

Some were younger than me, and sicker and it made me want to cry. Some looked like they were only remnants of the person they once were... as though their spirit had given up and the body was only playing catch up. And I cried... when that song ended I cried not only for what it felt like to be with those kids and to be frightened that they might someday be me, but also for them because I didn't know how to help them.

The one song that made me break down into sobs was "Going It Alone" because it put to words my feelings about my illness. It reminded me of my parents and how they had always "been a rock for me to stand on".

But how I felt as though I was truly going it alone. The greatest revelation came towards the end of the song when Buddy sang:

"Do you lie awake and worry / Never falling back to sleep / Are you going through some / Private kind of hell? / Do you also feel you're / out there on your own / Do you feel as though you’re / Going it alone?"

[From "Going It Alone" 1998 by Steve Schalchlin. See No Evil/Lil Shack o' Tunes ASCAP]

...and I realized what my parents must have gone through and how they must've felt when I told them that I wanted to die because the pain had become so great. I realized how frightened they must've been every time the doctor brought up the word "cancer". I remembered how my mom would hold my hand while I was rolling (sometimes running though, and dragging an IV stand because the doctor was late... ) into surgery, and how she must’ve felt when she let go of my hand and they whisked me away.

The minute the lights came back on for intermission I put my head in my hands and cried and cried, I cried for my mom and my dad who must've been put through hell, for Gideon and what he was going to do tomorrow, for Buddy who had his religious beliefs tested with the song of a dying man, for me because I knew what the song was saying and for every sick person who had ever hit rock bottom and not had the energy to pick themselves up on their own.

I thought I had pulled myself together by the time I exited the theatre to grab a breath of fresh air... but the minute I saw Steve and got a hug I broke down again because he wrote the songs that proved he knew what it felt like to be going through it too. I honestly wasn’t sure if I had the emotional strength to sit through Act Two if it was anything like Act One. Even though I knew that I needed to see the rest of this show.

When "Friendly Fire" started though, I knew that another emotional rollercoaster was ahead.

"...Cause I'm so full of medication / I'm like a ravaged nation / And sometimes it feels like / My medicine is killing me with... / Friendly Fire / Makes the enemy look tame..."

[Lyrics by Marie Cain. From "Friendly Fire," music & lyrics by Marie Cain & Steve Schalchlin 1998 by See No Evil/Lil Shack o' Tunes/Raisin Music ASCAP]

...and I cried once again because of the truth in the song. It reminded me of how often the medication would make me feel worse than my disease ever did. How every time I was preparing to leave the hospital and my release was delayed because the medicine they pumped into me had me vomiting so violently that a car ride home would be impossible. What it really reminded me of though was all of the painkillers the doctors had prescribed for my arthritis and abdominal pain over the years... how they would make me vomit night and day and the headaches they would give me.

It always struck me as ironic that the doctors would give me something to help cope with the pain that only created more pain. That song struck home almost more than the rest just because as a kid (assuming that I'm not a kid any longer...) I would often stop taking the medication because even though it was helping the disease it was making me sicker.

I would always get admonished by my doctor who would tell me that they understood that the steroids were not easy on the system but that they were in fact making me healthy. I can't even honestly count all of the times I halted medication programs because of the reasons "Friendly Fire" gives. Thank goodness for my parents though because they would always make me start again and they saved me and that helped create the healthiness I feel today.

Then Gideon started to sing "Connected" from which I pulled the title of this essay,

"Someday if I lose this fight / To carry on / Please send me someplace / Gently out to sea / Then listen as I whisper / Softly in your ear / Connected to each other. / We will always be / Connected to each other."

[From "Connected" 1998 by Steve Schalchlin. See No Evil/Lil Shack o' Tunes ASCAP]

Once again I cried because of the truth in that statement. It reminded me of how I would talk about sickness with both of my uncles, one who died last year of kidney cancer and the other who died the year before last of ALS or Lou Gehrig’s disease.

How we were all connected through like experiences and even more, how we were all connected through love. And how their respective deaths cannot break that connection. I also felt connected to the piece itself and the creator because he had put to words experiences that had plagued my childhood.

Most of all I felt connected to the rest of the audience because we were all experiencing the same amazing show and even though we all might’ve been moved in different ways, or some not moved at all... we all had to agree that it’s greatness and it’s ability to bring a diverse group of people together was apparent.

"You can only lift the darkness when you care / Either you love or you don't / Either you will or you won't / You don’t need an explanation / Echo: Need an explanation / You can only make a difference / Echo: Only make a difference / You can only lift the darkness / When you care"

[ Lyric by John Bettis. From "When You Care" 1998 by Steve Schalchlin & John Bettis. See No Evil/Lil Shack o' Tunes/Songs by John ASCAP]

The show reminded me of my life, of my illness and how my illness didn't matter. It reminded me that we all suffer from a terminal illness called birth and that it didn't matter. Most of all it made me thankful because I might not have been healthy, I might not be brilliantly intelligent, but my cup was never empty when it came to people that cared about me. That the people that cared about me and every day told me that I could get through this and that they would help me... that they were all the medicine I needed. And last but not least, it made me realize that we are all connected... not through illness but through kindness and understanding.

Most of all I left the theatre knowing how I could make a difference, for a while I’ve been talking about volunteering with the children's hospital that I spent most of my childhood in, and now I will.

The most caring I can show is for other sick kids that were like me and to try to give them hope or just listen to their stories and let them know that I understand. I've never come home from something and felt compelled to tell my family how much I loved them and to call my friends up and tell them how much they meant to me. To want to make the lives of those around me easier... just because I care.

I cannot thank the entire cast and crew of "The Last Session" enough, from creators Steve Schalchin and Jim Brochu to the cast members (respectively) Bob Stillman, Amy Coleman, Joel Traywick, P.M. Howard and Michele Mais for making this work of art come alive and touch so many people. It truly made me realize that none of us have to be going it alone because we are all connected to each other...

...that I've never been alone.

Katie Hess

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