|This piece is a "love letter" from its author, BJ, to the TSA-Talk mailing list in general, and TSAT in particular. When BJ dropped us a short note expressing his appreciation of TSAT, we asked him if he could provide a more expansive note for our nascent letter column, and this is what he came up with (which is also on the Web, in a different format, here).|
©2002 BJ -- all rights reserved
Finding distraction in a world of drip IVs, injections, stool and urine samples, nurses who could double for linebackers, pain-vs-la la land, and so many other things that go along with having cancer, is not an easy task. Yep, I have that 'thing' that other people get, but "oh no, I'd never even consider myself weak enough for the flu," so therefore couldn't possibly...
Well, I was weak, human, "cell blocked," maybe even damned. Can't tell you how long I denied it, hid it, cursed and tried to defy it. Then, as I laid in my bathroom floor in pain, I had to come to terms with it. It started two years ago (in 2000): I was 22, in the military, and dating that special someone I knew I'd spend the rest of my life with. None of those things worked out. In a few months I was medically discharged, was abandoned by the love of my life, and even managed to turn 23. Nothing would ever be the same again.
I fought with the doctors and nurses harshly for about a month; which never resulted in getting my way; never. Felt like I wanted to die before I had to suffer any more pain. Little did I know how stupid I was acting, how little kids handled things a hell of a lot better than I had. Was brought out of my funk by a 12 year old kid passing by my room. At the time I was yelling at one of the poor nurses, because she couldn't get the IV inserted right, and had to stick me 4 times before giving up and calling someone else. As she started out of the room, me yelling at her every step to leave me the hell alone, the kid stopped in my doorway. When the nurse left I looked over at him and said something just as mean as I was to the nurse. He didn't even flinch. Just walked over to me and said that his little brother was 7 and had to be stuck 3 times in each arm, leg, and groin every week it seemed, and to count myself lucky she didn't tie me down like they had to do with his brother.
Ever since then, I think I slowly manage to fade my harshness into something much more tolerable. I began to see that I was not the only one in pain; also was not a victim of a cruel joke. However, those innocent kids that lay in pain, now that is...
Well, I bought my first laptop that Christmas. Began to get bored with magazines, books, cards, hole counting, and a few other things to occupy my time waiting for results or another chance for the nurse to poke me, to get something in or out of my body. Believe me, the skin is not the only way they do it either... uuug. Seeing one on a guy's lap made me want one. Having grown up with computers and being pretty much technology literate for the most part, I decided now was a good time to buy. Saving money was not all that hard for me, and always wanted one. Now was a good time as any.
At this time, I had been sick for almost 5 months, but only stuck in the hospital about 6 weeks. Was seeking relief both from the disease, as well as my own insanity that had set in. My family couldn't visit, cause they are in other states and money is tight for them. My friends are all in the military and don't really know much other than I got out. That left me with just the medical staff and other patients to talk to. The patients are great when they are not drugged up or in a bad mood. Staff tends to be detached a lot of the time, with a few exceptions. I managed to get cleared for a day out. It had been a while since I had left the hospital. The last time I could leave was to set up housing when I was well enough to be discharged completely. Little did I know that it would turn out to be a place for home care. Did find a nice little house away from the city. (Oh this is Tennessee by the way. East TN is beautiful, and since I had grown up in flat FL, I fell in love with the mountains right away.)
My day out was nice. My mission: Buy an inexpensive laptop and sign on to AOL. Not to mention eating a decent meal.
All was well with the world, until I had to check myself back in that evening. But my spirits had been lifted quite a bit. Excitement filled my body, as I got settled in my room again, and looked over at my bags that contained my new best friend. I even named it Mr. Lap Toppolus; LT for short.
After the nurse came in and checked my vitals, which I knew would be high cause of my growing impatience to get online. Telling her as much didn't stop her from writing it in the chart that I was tachycardic and sweating a bit. Don't they take into account emotions? Not all deviations from the normal numbers has to do with being sick!
When she left me alone for the night, well till bed checks that is, I unpacked LT and plugged him in. I had played around with it before I came back to the hospital, so all I had to do was connect my room phone line and plug the power cord in. I got the free trial AOL disk and popped it in.
I was online in just a few short minutes. I had been online before, but this was my first account of my own.
Yep, I sure turned into a regular web surfer all right. Mostly I found chat rooms to talk about living with cancer. After I got tired of moaning, listening to other stories of pain, and things they'd like to do to the regular overbearing nurse we have all had, I started searching for other things. Didn't know what I was searching for, but knew that I didn't want to continue with the "plagued-n-pain" rooms I had been chatting in.
Around this time, I had been online a good two weeks, and was looking at discharge very soon. I have to say it went by much quicker having LT to play with. (my laptop if you have forgotten). Hardly ever spoke to anyone since LT's arrival. I think it was a welcome change to both the staff and other patients.
Searching... searching... what to find. I typed in "adults in diapers". Why, you ask? Well, since I fell incontinent, the side effect of one of the many drugs I was taking. I couldn't tell you which one -- I think I would have to do some creative detective work. That drug, coupled with some sharp pains I would get every now and then, caused me to lose a lot of my pee in my bed or wherever I had been standing at the moment. Quite embarrassing at the time. It is not so bad now, in fact I discovered a side of me I never knew existed. I have grown very fond of diapers, and wouldn't want to give them up even if I got total control back. You know what? The nurses started treating me better after I started wearing them, which was a definite plus!
I found the typical baby/incontinence sites selling diapers and such. I also ran across a few sites that labeled themselves as infantilists. Interested, I clicked on one and discovered a whole new world. Before long I was reading stories, chatting with a few people, browsing thru pics of adults in diapers; disposable and cloth types. I was amazed.
Discharge day came! 3 months I had been among the inpatient list. Not exactly in perfect health, but close enough for me. Anything to leave... unless... Well let's not talk about that. Hospice was notified two weeks before my discharge so they could finalize insurance; they even went out to my house and checked everything over. I met the two regular nurses the day of my discharge, that I would be seeing on a daily basis. We chatted for a while. They were very nice, which they both impressed me how gentle, yet strong they were. A far cry from the burly nurses I was used to. (You know that cancer ward could have easily doubled for the mental ward.) I gave them each a key, and they said they'd see me in a few hours.
Home at last. Oh, what a feeling. Not only is this my first home of my own, but I have a great view of the mountains from my bedroom window.
It was so nice not to have an IV pole to lug behind me. It is amazing how much appreciation I had right at that moment, for the smallest things. Clothes instead of pj's, the smell of clean air without the antiseptic tinge to it, the sound of birds instead of low moans of pain coming from the next room. Yes, I didn't want to have to go back in the hospital for anything. (Don't spoil the moment with pity, please)
After I made a juice smoothie, I looked for a good comfy spot to sit with LT. I knew one of the nurses would be by in a small while, and didn't want to do too much to change the place around. I was still rather weak. At least the nausea went away. There's a phone jack by my bed, so I thought that was a good place for now.
Having read most of the stories on Deeker's Diaper page (the long ones, but wasn't interested in investing time in the smaller stories, they leave me hanging more often than not.), and read a few on other sites. Looked into something mentioned on one of their links as web rings. In the ring I found a ton of sites labeled as transformation, transgender, age regression, etc. I wasn't able to investigate it further, because I heard a knock at my door and heard Gina come in. That was one of the nurses from Hospice (Patty is the other) I don't think I will forget the first day's help.
She helped put my clothes away and had brought groceries to add to the ones she and Patty stocked for me earlier. She made dinner, but I wasn't feeling very hungry. She started to feed me since I wasn't eating much, and was amused by that. It was only about 7pm, but I was very tired. She helped me into a dry diaper and my own pjs, and tucked me in bed. She said Patty would be around in the morning sometime. That was the last thing I heard, before falling asleep. Didn't even hear her leave.
I did a few glances at the story archives in those few first days, but movies, TV, and house things kept most of my attention. I was feeling stronger, and started a flower garden with Patty's help.
Pain struck me two weeks later in my head; Knocked me to my knees. I was alone in the kitchen making a bean salad, if I recall. Patty wasn't due to come by for an hour, so I was forced to press the button on my arm patch that signal the hospital to send help. I don't remember a whole lot in those months. I do know I was home not long after they determined I had a small tumor right in the center crease in back of my brain. (they called it the posterior central region) They removed most of the mass, and let me go home after about a week (I think? but don't quote me) and take my chemo treatments here. I was out of it and can't remember much. Either Gina or Patty would be with me the whole time taking care of me. They said one other nurse took care of me for a day, (Kathy I think was her name?) 'cause both Gina and Patty had something they had to take care of. I can only remember bits and pieces , and don't think I could even place the remembrances in order Music was playing a lot tho, I think. It helped me relax.
Even tho I was back to IVs, prodding, pain, etc... I was glad it could all be done at home. I wondered why I was stuck in the hospital the first time? I asked Gina and she said that I was not mentally well enough; that I had spoken too much of wanting to die, and they needed to be safe so I would not harm myself. Restraints can be used in the hospital mush easier than in someone's home; "legal safety as well as patient safety" is how she put it.
I slowly regained my mental awareness, well at least I wasn't losing days at a time anymore. Just a few hours here and there. It was getting close to my 24th birthday and those two nurses cooked up a surprise I will never forget.
I was starting to get interested in reading stories on the TSA archive after the chemo ran thru my veins. The added pain meds didn't kill the pain completely, and it did nothing for the nausea. After about an hour where I couldn't do anything but lay rocking back and forth and pray to God to take it all away, it faded into something tolerable. If I had nothing to occupy my mind, I would be just as bad off. Gina or Patty was there to rub my back and to do what they could to help with the side effects, but it was only when I found myself concentrating on stories from the TSA site that the nausea and pain did not have center stage. The hard part was getting my mind to focus, but once I was into it, I was amazed as how lost in that world I could become.
The Circe Treatment was the first story, on the Full of Worlds page.
What does it mean to have power over pain? Let me tell you I think it is more valuable than a gold angel dropping down from heaven that would grant you all the riches in the world.
Time is a wonder to me
For forward is all there can be
The mind can go just about anywhere
Escape time's pain and whisked to a vampire's lair
It can travel thru space or adventure thru Metamor Keep
It can even escape pain thru a dream filled sleep
No, time has nothing on the Mind
At its best, pain can't keep it confined
(written by me )
As I would read the story The Circe Treatment, I focused on that world so intently, it could best be described as an out of body experience. No longer was I BJ the cancer patient in pain. I was a witness to Derksen's plot to use "his" Circe Treatment to steal the prince's life, by becoming him and turning the real prince into a rare horse for his stables. Never before had I been so lost in a story. Made me start to think what it would be like to change into an animal. A raccoon, fox, something with warm fur, since I get cold a lot. I found that I didn't want to stop reading. I would fall asleep with LT still on in front of me. Gina and Patty both would feed me while I read the story. I even caught Gina reading from LT when I woke up from a nap a few times 'v' When I finished, I read all the Spells R Us series, The Blind Pig... I fell in love with a few of Lady Maire's creations, The Little Bubble Dream, and a few others I can't remember right now.
When my 24th birthday came around, Gina and Patty both came on the same day. I was still very weak and needed constant care, but no longer needed them to stay overnight, since I was knocked out anyway from the tranquilizers, and being in diapers meant I had no need for assistance during the night. They let themselves in like always. I was surprised to see both of them, but happy all the same. They wished me a happy birthday and both gave me a kiss on the forehead... I half wondered if they were taking my temperature at the same time:)
They each had a gift for me. As I was tearing off the paper from Patty's gift I heard a loud knock. Gina and Patty looked at each other and smiled, then looked at me and said that my guests had arrived. I didn't know what they were talking about, until I heard my brother yell "Anyone in here?" "In here!" I yelled as loud as I could with a big smile on my face.
My brother, mom, the cousin I was closest to, and two of my military friends all came back to my room! I had no idea they were coming. Hadn't even talked to my mom in about a week.
It was wonderful, and I had Gina and Patty to thank, for arranging it all. They helped my mom and brother with the cost of travel, and found two of my friends I had talked about off and on. My cousin was able to come on her own when she heard my mom and brother were coming up. They had all met up at a near by hotel, and came over together in a van they rented.
I finished opening the presents from Patty and Gina after hugs and explanations were passed around. Gina gave me a gift certificate for Gevalia coffee, knowing how much I love the stuff. Patty gave me wonderful gardening gloves that fit perfect, and a five piece gardening tool set. And the best gift of all was them getting my family up to see me for a few days.
I don't know how I will ever be able to thank them enough. They take care of me, altho it is their job, but they really go above and beyond.
It has been long going, and a rough ride... and will continue to be, since the last chemo did not completely work. I am horribly weak, and it has taken me two days to make this letter. Gina and Patty typed a lot of it for me as I dictated. They even corrected me on a few things I had not known.
Let this elaborate letter be dedicated, not only to all those wonderful and creatively intelligent writers, who keep my physical pain at bay and allow me to focus on worlds full of magic, but also to Hospice for giving me Gina and Patty. They diaper me, feed me when my hands are too weak and shaky, medicate me (altho that is not always pleasant), trying to rid my body of this disease that is not always controllable. I thank all of you at TSAT and Hospice to infinity and beyond! :-)
If wishes were water...
(original poem written by me, BJ)
If wishes were water, I would drown in hope
There is no coming up for air,
being grabbed and pulled under by wishing I were well, wishing I could turn back time, wishing I could have one more day of not knowing what real pain felt like
Wishing and Wanting would be the ebb and flow of waves upon the beach
Upon the beach where I used to reside
If wishes were water, the taunting of thirst would still be known
The salt and pollution threatens to choke the life out of my treading body
The wish to be saved is overridden by the need to keep others away
The risk is too great to call for help,
the fear they will get sucked in too
The only comfort is God in heaven
If wishes were water, they would run so deep and so far
you could not boat the length,
nor could you touch the bottom
Straight up is the only way out,
altho the salt is so thick in the air
sparks would form on the propellers of a rescue flight
If wishes were water, it would be best not to fight their current
Let the flow take me where it journeyed
Let the water wrap around my body and hold me up
Let the hope that wishing brings keep me warm
Let peace replace fear,
for good thoughts can bring safety in numbers
The more good thoughts wash over you
the less power a wish has
If wishes were water
I would drink sand, eat dirt, and
bathe in cotton
As to avoid the power in wishing my life away
for it just might happen
Hmmm, if wishes were water... now that gives me an idea! The TSAT has given me yet another ray of light. Now that I am connected with the Metamor Keep I don't have to die. Oh Gods, if I can have a purpose, Death can't come near me. Purpose is the one thing that can not be destroyed. If a purpose can grow inside of me, maybe... let me think a bit more. I will be back.