Bonus Round Patient Pages
Encouraging patient/doctor/caregiver communications


February 4, 1999: I'm a Loner

dear sparky,

i'm a loner...

now i'm sure everyone reading this is thinking that i've got some strange perception of myself--i'm always being told how outgoing i am, how friendly, etc. and those things are true. but deep down--i'm a loner. or at least i used to be.

i was talking to karen today about the first day i saw TLS and she said how cathartic is was because it wasn't until i saw the show that i really started to open up to her and tell her what this illness was really like. and that struck me--because she's right... up until i saw TLS i kept everyone that wasn't family at arms length, always afraid to let them in close to me.

and i think i know why--i hate pity. i hate it when people act like i can't handle this disease... which was why i never let people see me when i was scared, depressed or angry. i got used to being happy katie... and then on the rare ocassions when i would break down in front of my friends--they wouldn't know what to do. it would scare them and they would run away... which only hurt me more.

but then i saw TLS and i saw how gideon was able to maintain his courage and still feel overwhelmed by his disease... so i started opening up. and it was scary at first... letting all of these people in. it still scares me sometimes--that's why these letters are such a big step for me. it's one thing for me to discuss the "technical" aspects of my disease, but to discuss how it truly affects me... how i'm often not as sure about things as i seem to be... telling people that always makes me jittery.

and i still hold people at arms length to a point, i still haven't fully mastered the balance between independence and knowing when i need to be comforted. it's not so much that i don't trust people anymore--because i know that the people close to me at this point in time would never do anything to hurt me... but i need to be able to have faith in my ability to carry myself through the rough times.

because as much as i need people and as much as i need to hear that things will be alright--this is truly my battle. i know that we are never really going it alone--but when it comes down to it... it's me going into surgery, me taking the medicine, me waking up in the middle of the night with nightmares... and at those times when i want to reach out for someone and there's no one there--i have to be my own comforter.

but i'm glad that i'm learning how to open up--even if i'm still not letting people comfort me... i feel like the friendships i'm forming now are stronger than anything i've ever had in my life. and that makes me happy.

lots of love,

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