Bonus Round Patient Pages
Encouraging patient/doctor/caregiver communications


Friday January 22, 1999: The Big Taboo

dear sparky,

today i'm going to talk about the big group taboo, you know, the one thing no one ever talks about but that they are all thinking of.  yup, you guessed it...

wanting to surrender.

yes, i have wanted to surrender.  i remember it vividly--like a dream... i was 10 years old.

i had just collapsed in the hallway after trying to walk and i looked up at my mom and said very softly, in the midst of all of my tears, "sometimes i wish that i was dead".

i'll never forget the look on her face--i could've stabbed her in the heart. i tried to explain to her why i had just said that, i didn't even know that there was a word attached to it--"suicide". 

i just told her about the pain, about how hard the fight had become, i would speak in sentence fragments because the tears broke up my speech.  "why does it have to be so hard to live?  why does everyday have to be a struggle?  when will it end?"  and mom just sat there holding me... she couldn't say anything to take away the pain, she couldn't say anything to make it better and so we just cried together.

ten years old.

it wasn't a decision borne from self-pity, it was just being in the utter depths of despair, doubting that i had the strength for the fight anymore. i don't think i can really fully describe it--people think suicide comes from thoughts of anger, self-pity and depression... but i just wanted to give up. 

my life wasn't mine anymore--i belonged to the doctors and i answered to the medicine. my nights belonged to the demons that plagued my sleep and my days were spent in pain... how was this a life worth continuing?

i was fortunate enough because the year after i was diagnosed my parents put me into therapy, so even though the man was a lunatic he was someone to talk to-and i did talk.  i talked about how i was afraid to wake up in the morning because the minute i woke up, the pain returned.  i talked about how sick the medicine made me, how tired i was of being just another body to poke at in the doctor's eyes, how even breathing could hurt.

and i worked through it all--it's amazing, once you get all of those feelings, all of those fears, all of those "tired of's" out in the open... they aren't so scary anymore.  that's why i always encourage people to talk about, and i would talk about my own battles with it.  once you lay all of the cards on the table it's much easier to decide what to do next.

i can't say that i haven't flirted with the idea since that initial incident--i have, it's inevitable.  i've got a chronic disease that goes through intense periods of sickness--it's only natural to think of what it would be like to one day say "no" to the medicine, to the doctors, to the hospital, to the surgeries... to just admit that the fight has gotten to be too big and that i've not only lost sight of the finish line, but i don't even know what i'm fighting for anymore.

which is why i suppose i'm writing this letter--it's hard to keep these thoughts from being whispered in my ear when all i'm doing is lying around in pain.  but i don't think i could ever actually do it... even when the bad days are greatly outnumbering the good ones (like they are now...) because i love life too much.  going to the depths of despair teaches you is how to enjoy the little things in life--how to savor the truly good moments in your life and make them last longer than any depressing one ever could.

it's funny--but newer friends are always surprised when i tell them that i was once suicidal, that i have a chronic disease, that sometimes my life basically sucks.  sometimes they don't even believe me--and that always surprises me, but excites me as well... makes me feel that i'm really finally learning all of those lessons that i've only talked about.  that i do enjoy life and it shows. 

my doc used to remind me that this illness was a period of ups and downs.  sometimes one will be more intense than the other--but it's always moving, always changing, always going either up or down.  i try to explain it to the other kids, that the longer they stay with it... the more they endure the downs--that eventually the good days will outnumber the bad. 

i try to find happiness in the meaningless and the random--in the routine.  like today, i was able to brush my teeth and wash my face without collapsing, that makes me happy.  keeping the dueling perspectives going--taking each day one day at a time, making goals for myself, like the not-collapsing one and labeling each day a "good" day or "bad" day depending on whether i accomplished the goal. 

but also remembering that even though each battle is very immediate and very real--that the biggest battle, this bout of illness... is only temporary. keeping one eye on today and one on eternity...

(i ramble too much...)

love you lots,

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