Bonus Round Patient Pages
Encouraging patient/doctor/caregiver communications


February 8, 1999: Running in the Rain

dear sparky,

today something happened that i never thought would happen. 

i was having a particularly rough go of it today... i was cranky and being a little bratty, i admit.  so i went into my mom's room to talk and cool off. at first i was just griping about random stuff--and then the mood shifted and i started to talk about how rough the steroids were being to me... and my mom looked at me and said point-blank...

"i don't want to talk about your illness right now."

and the way she said it--i felt like i'd been slapped across the face.  i just looked at her, unable to think, unable to feel, unable to even move... i was stunned that she would ever even think of saying that to me. 

i fled the room and ran to my own, grabbed my leather jacket and a pair of shoes and bolted out of the house.  i sat on the front stoop and put my shoes on and i just started walking...

i don't know what time it was when i left the house... well after one in the morning, so there was no one out.  we live in a gated community so i didn't have any reservations about walking alone so late at night... and i just walked... and cried.

why i walked for so long i don't really know, at first i wasn't even thinking... i was just stumbling along very blindly almost transfixed by the way the water was pooling on the asphalt.  then i would look at the sky... and then i'd take a deep a breath... and i'd keep walking.

then i started walking faster... and faster... and faster... until i was running and i just ran and ran and ran.  my knees at this point were screaming and practically every other joint was throbbing as well--but i didn't pay any attention to that... i just kept running.  i don't really know what i was running from... i'm sure if anyone saw me they must've thought that i was being chased by imaginary demons because i felt like i was flying across the pavement.

and maybe i was running from those demons... trying to outrun what mom had said, trying to outrun the pain, trying to outrun the medicine and the doctors and the hospital and all of the years i'd spent succumbing to this disease. maybe i felt that if i ran fast enough all of those things would disappear...

then it started to rain... and i slowed down a bit... taking it in and feeling it on my hair and face.  and i finally started thinking, and i finally started feeling... and i finally stopped running and let myself really be hurt by mom's words.  i stopped myself and i let myself feel all of that pain from so much physical exertion.

and i felt alive.

i knew that i had to keep walking or the pain would be so great i'd collapse, so i kept walking... i walked slowly and i looked at things and it was though i was seeing everything for the first time.  and i felt very alone.

it was just me... standing there in the rain, in middle of the night, in the parking lot of our gated community.  and there was no one there to comfort me, no mom to run to... no karen to talk to... no laura to pick up and call on the phone... not even a travis to make me feel even worse.

and i felt more pain than i've ever felt in my entire life...

but i was alive.

and i was still walking.

i felt like i had to keep walking... that i couldn't stop now--that there were so many things to keep going for.  somehow i'd turned this insane excursion in the rain into a metaphor for my life... and i wouldn't let myself stop.  no matter how badly my knees ached--and at this point it was so bad that i couldn't even feel my feet... the pain in my knees had actually numbed what was left of my legs... but i wouldn't stop.

until finally the rain stopped... so i stopped.  and i felt a little bit better... i felt strong because i knew logically that after all of that exercise, especially in the rain, that i should've collapsed... but i didn't.

i felt like i'd finally outrun the demons.

so i went home.

and the moment i entered the house... i didn't feel so strong anymore and i didn't know what to do.  i walked to my room and realized that i'd be out for over an hour and a half and had missed taking my late-night meds... so i changed out of my sweaty, rained on clothes, grabbed the pills i was growing to hate, found some gatorade and downed the pills. 

then i decided that i had to talk to mom...

i didn't know what to say.  i'd thought about it while i was running and i thought perhaps i was over-reacting--but then i quickly banished that thought because i know she knew how much she hurt me.  and that's what hurt the most--all my life... i've never said something to either mom or dad with the intention to hurt them.  my brother was always the one who did that--he would scream "i hate you and i wish that you would die!" at them when he was angry and then he would slam his door.  leaving me to see the hurt in mom and dad's eyes.  and i vowed to myself that i would never give them a reason to look at me with so much hurt in their eyes, because they'd done so much for me since i'd gotten sick that i couldn't see myself ever hurting them.

and mom hurt me.

and so i told her that.

and she looked at me--and she looked like she was going to cry and she just said "i know, i know and i'm sorry".  and she asked me if i wanted a hug and i said that i didn't right now... and i just walked out.

i walked to my room and out of pure reflex... i signed online.  i signed online thinking that i would be able to talk to someone about tonight, that i'd find someone to help make me feel better... and then i turned of my IM's.

because the person i need to talk to, the person who would make me feel better... she was only a room away.  so i went back and told mom that i was ready for that hug.and she started crying...

and she started to tell me how incredibly sorry she was and that she had only said that because she was worried about me and that in some ways she blames herself for this disease, for my being sick.  and she kept crying... and she told me about the day i was diagnosed and how she cried then--how she wished more than anything that she could take this away from me and how all she's ever wanted is for me to be able to live a normal, healthy life. 

she told me how hard it's been for her to see me so sick and to see me trying to smile in spite of it all--how she wished that it didn't have to be this way for me.  she said that she was worried this disease would someday become something i couldn't control--and that i'd start to feel like a victim.

and i started to cry... and i told her that i didn't feel like a victim.  that it was because of the strength she and dad had given me... that it was because of them that i was able to cope with this.

and we cried together. 

then she got on my case about the running like any good mom should... we looked at my swollen, tender joints and she asked me if i wanted to call the doctor tomorrow and i said no.  i looked at her and i told her to not worry about me because i can handle it... and i think she finally heard me. 

we then talked some more about random things... both of us trying to lighten the mood.  and i told her that i loved her, i gave her a hug... and then i came here to write this letter.

i don't want to go to sleep tonight because i don't know what tomorrow will bring... i feel as though for the past few months i've been living in a dream and that it's time for me to wake up.  so perhaps i need to take a break from everything and recoup... even though i connected with mom and we bonded... i still feel like i'm standing out in the rain with nothing to hold onto.

what do you do when the rock you've always stood on is suddenly pulled out from under you?

i guess i'm about to find out...

lots of love,

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