more adventures of the paperback princess

Finally out of her lonely tower, the Princess finds a soapbox and calls out loudly to anyone who will hear…

I have spent the last few years feeling like a princess locked in a tower waiting for a prince charming I knew would never come. I knew this because deep down I knew that the only person who could break the bonds that kept me locked up and lonely was myself. In February I was introduced to a few inspiring women with similar conditions to me. They are active members of society fighting to improve living and working conditions, as well as better treatment centers for adults living with disabilities. The world assumes that, as adults, we know what we are doing and we no longer need on-going treatment. In my case - and many others - this is just not true. I just had my third surgery in three years. While the outlook is good that I may see drastic improvement this time (or at the very least stability in my condition), no one can be entirely certain. They can only be hopeful and optimistic. These women I met gave me the courage to break out of my lonely tower, even in the middle of winter. I decided to go tanning. This came as a surprise to the girls at the tanning salon, who have never had a wheelchair client before, but they were always helpful and friendly. I had to wheel three blocks in the snow to get to the salon. It may not sound like very far, but in a chair with no traction, and arms not used to moving myself about long distances, it started out as an extreme challenge. After a few times, however, I began to revel in the experience. This was something I could do on my own for myself, and it made me feel better. Not just because I was getting a tan, or the badly needed vitamins you can only get from sunlight or artificial sunlight, but because I was finally taking a step to being independent. I also went to a concert with a good friend of mine. While we couldn’t dance, or even see the stage because I went in my wheelchair, it was a new experience for me - a wheelchair user - to experience a concert. I have experienced a few concerts as an able-bodied person, but not since the loss of the use of my legs. At this concert, which I went to in March, I was still treated like a person and everyone was quite friendly. So, while I could have wished to actually see the band on the stage as opposed to the screen on the back of the stage, this experience gave me the confidence to do more and more on my own.

Spring came and then melted into summer. Even with my surgery, I have felt like a new woman: a woman with a purpose, and a woman who has the potential to be independent. And that aspect has added a whole new dimension to my life that has been missing for years. I’m not less than human because I lost most of my ability to walk. It is like the new mayor of Vancouver, who is paraplegic, said: “There has to be a better way.” And then he found one, and look where he is today,: in one of the best places to be to instigate change and promote awareness of those with disabilities, and to prove to the world that we are human and people and capable just like every one else as long as we are given a chance. We might not be able to do things like a fully able bodied individual, but there are other ways to complete the same tasks; better ways. So, I have been finding better ways, and have worked toward them. Many of them are financially out of my reach, but with carefully planning and funding, I will reach my goals. I will find stability, and work my way toward a place where I can affect change.

The hardest part about this new awareness and this new experience is discover how often people with disabilities are treated more like liabilities than people. It’s heartbreaking. I went to a concert on the weekend. It was another Hedley concert, with the same friend. This time it was on an outdoor stage, part of a new summer concert series here in Edmonton called Ed Fest. I was excited to go. In fact, everything started out great: we didn’t have to wait in line and my friend and I were ushered to the very front of the stage where at least four other wheelchair users were already waiting with their companions or friends. They were so excited and happy. Some of them haven’t been allowed to even attend concerts before, and here they were - and given a place where they could actually see the stage and the band. It really was awesome. Security warned us there might be some jostling, but if we thought we were fine then it was OK. So we waited in the hot sun for an hour and people crowded behind us, but they are all friendly and excited too. One family brought their little girl, so we let her stand beside us, so she could see the stage and not get pushed around. The first warm up band starts: Murder City Sparrows. They were a good band with tons of energy. It was incredible. It felt like being at a real concert. We even got soaked by the giant hose, and loved it. If the whole night would have been like this, it would have been one of those good unforgettable experiences. Not only for me, but for all of the other wheelchair users lined up beside me, many of whom do not get the chance to get out at all. Most of them are locked away in their own lonely towers.

However, things did change. Security guards starting talking to some of the companions, and only through the grape vine do we hear that we were probably going to get moved before Hedley comes on stage, so that we don’t get hurt by the fifteen year old girls rushing to the stage. Honestly, the people behind me weren’t going to rush the stage, or let anybody rush past them, because they had a little girl to protect. That, and my chair, and all of the other chairs could have handled some jostling. There were some heavy duty chairs. Plus, we were all low enough that they had a great view anyways. But none of those facts mattered. The only thing that mattered was that we were liabilities and they could get fined or have a law suit thrown at them for us being there. So, the parents, companions, friends and people in the wheel chairs argued. I could see them arguing, trying to understand why the security people were being so rude in their dealings with them. Apparently, security threatened to throw them out if they didn’t cooperate. However, after much more arguing security conceded to try to get us a consolation prize for being sent to the back. I hate consolation prizes. Now, the reason all of those ‘apparentlys’ were thrown in there is because NOBODY talked to me. I was completely ignored until after the crappy second band was over. Then, we were told - on no uncertain terms - that we were being moved. For the first time in months, I felt like I was being treated like a dog, or something else less then human. The security women yelled at my friend for looking at her, and the other security guard I tried to blow up at, saying nobody talked to me or asked me my thoughts on the matter, just stood there uncomfortable and said nothing while I cried. Again I felt inhuman, not even worthy of being talked to or consoled. My chair doesn’t define who I am and it doesn’t say anything about me, other than “this person uses a chair to get around.” However, some people just don’t seem to get that. So, all of the wheelchair users and friends were moved around to the other side of the stage behind the crowd gathered there. “See,” they said, “you can still see the stage.” And, when I didn’t move up closer, they asked why. Well, if I moved up closer, I wouldn’t have even seen the stage. Just little girls bums, which isn’t my idea of a good time. After I calmed down, I was able to talk to the other people who got moved and I finally got the whole story. Also I found out that our consolation prize was that we get to meet the band after the show. The show which would end around 11:30, after spending the whole day in the sun, and a band who would only see us cause they felt sorry for us. Sorry that really is NOT my idea of fun. I talked to a 14 year old girl in an electric wheelchair. She was so mature, and rational about the whole thing. She admitted to being upset and crying, but she calmed down, like myself, and tried to look at the whole picture. She was a very smart young girl and if I had talked to her on the phone I wouldn’t have even known there was something physically wrong with her. She was brave and intelligent. These are the things people don’t see. The security people only saw our disabilities, not the people behind them. Also, another piece of information to note was that after we were moved, security completely left us alone. They didn’t see the additional crowds of people that stood in front of us, making it more and more difficult to see what little of the stage we could. And if they did, they really didn’t care. By 11 o’clock, I was getting tired, and the band was almost over, and I wanted to win my boyfriend a giant care bear before the fair closed - not to mention get something to eat, because we hadn’t eaten since 2. So, we left and laughed because we could have heard the band just fine from the fair grounds, and would have saved ourselves the trouble of being harassed. Its days like these that only reinforce my need for independence and my need to make myself heard. Everyone needs a voice, and it is very apparent that some very intelligent people who happen to have challenges that can be labeled as disabilities really don’t have one.

So I am now getting out of my lonely tower and stepping onto my soapbox. It is time to no longer feel helpless.

Just a little evidence

ED FEST: A fun event for All?

Our View of the Stage
for the warm up bands:
up close and personal, the people in the wheelchairs
off to my left were extatic that they could finally see the stage

Hedley: the Main Event

Apearantly we can come for the show,
but not get to see what we came for

 

Kals' Korner: Crazy Sunday.

Kals' Korner: Crazy Sunday.

Every Time I Turn Around

Well it's official, I'm an adult! At least I must be because everywhere I turn I find another person just got engaged. By the end of next summer I'll be one of the few single people left in my group of friends. Not that I'm not excited for everyone, because I really really am. I want my friends to be happy. I think the big deal is that everyone is moving on and drifting away. As it is we are already spread out in western Canada and rarely see each other, and as much of an incurable romantic as I am, I guess I just got used to the everydayness of life, which included dating and getting jobs and finishing school. And while I got used to that way of life as I went on my own rollarcoaster ride with my health, time sort of slipped past really fast. Now I'm sitting here realizing that all my friends are 24- 29 years of age, and that is actually a good responsible age to get married and take the next step in life. The adult step of life I guess. Even looking at my own life I see signs of adulthood all around me. I have a nice apartment, I'm growing herbs on my balcony, I'm planning a career, and a life with my boyfriend. I throw dinner parties, and rarely think of going to the bar. I still enjoying having a good time and I love good wine. But I don't miss the emotional rollarcoaster of University life anymore. It was fun, and I will always have my memories, but some of the stunts that we pulled seem so far away and so immature. 18 year olds have become a joke to laugh at. And all of this happened with out me even noticing it. I know I will always be a kid at heart, life wouldn't be the same if I wasn't, and definitely not as much fun.

I talked to a friend of mine the other day, and she, of course, is engaged. I asked her why I seemed to be the only one freaking out that life is changing so fast. Her answer was that everyone is a bit freaked out about growing up, but because we are so spread out, we had to deal with the panic on their own, and by the time they had a chance to talk to other people, it stopped being such a big deal. Which I guess makes sense, a lot of people internalize panic, and deal with it on their own. I, on the other hand, externalize my emotions and anyone can read me like an open book.

It also may have something to do with control to a point. There is a lot of my life I have no control over. My disability for one thing has been controlling my life for at least 4 years now, and I have had to learn to organize myself around the ups and downs it takes me on. So in my mind I have set up static buffers, things I can count on, solid good rocks that will always be there. My close friends have been those rocks. Things I can hold on to, so I don't get swept away with all the crap life throws at you. But now those rocks are changing. They are getting their own rocks, and getting caught up in their own lives. The sensible part of me knows that they will still be there, but they will be changed. Everything will be just a bit different, and I need sometime to get used to the change.

The silliest thing is, is that I want to get married someday. I want a life and maybe a small family. I want to move on and explore new places and new adventures. I want to see where life will take me. I am excited for that! So why am I panicked that everyone else is doing the same thing? I guess I just need time. Time to get used to being grown up...yikes!

eight days of hospitalization...

It has been two weeks and two days since my operation and I'm still alive and kicking. I have a splitting headache and the repairs they are doing to my balcony that started the day I was discharged really really really don't help. So since I didn't write anything in the last two weeks I thought that the best way to record the surgery was to break it down from the beginning day by day.

June 26, 2006: Day 1: Surgery

We woke up at dawn so we could be at the hospital by 5:30 am. It was a crisp clean and refreshing morning, the kind of morning that makes you mildly regret never getting up and out that early in the morning..Ever...Unless your forced to. We got to the hospital on time and I had to change out of my clothes into those ugly gowns that don't hide much and then we began to wait. At approximately 6:30 or so (I don't remember exactly I was pretty tired and nervous) they took me away to the operating room. My beautiful boyfriend held my hand until the big doors that they wouldn't let him pass, I was taken away into the abyss of the operating room. This time the room was very well lit, almost too well lit, and despite that I didn't have my glasses and I can't see with out them, I had a fair idea of who was talking to me and when. A few of the residents introduced themselves to me, and one of the stayed by me until they put the IV in my arm and pumped the anesthesia in. And of course when that happens everything fades very quickly.


The next thing I know is that I'm in the recovery room with a nurse sitting beside me and a nice doctor asking me questions. Making me say where I am and all that jazz. Apparently I didn't pass because I heard quite clearly the order to get me a bed in the ICU. The nurse stayed by me saying my name every time I drifted off to sleep to wake me up. Apparently what has happened was they put a whole new shunt into my body so they used my left plural cavity to drain the fluid, instead of the right one which already has a shunt in it. My lung slightly collapsed and I stopped breathing every time I started to fall asleep. There was no beds immediately available in the ICU for three hours, so I stayed din recovery until than, but I don't remember much. When I finally got to ICU, My Aunt and My roommate was there as was a bouquet of flowers from my boyfriends parents. I remembered them being beautiful but not much else. I was only allowed two visitors at a time so they traded off for a while then they all left except my boyfriend so I could sleep. (my breathing had evened itself out). I don't know how long he stayed exactly but I do remember drifting off to sleep while he held my hand. It was a wonderful feeling to have a warm touch to calm me down after the confusion and the pain of the last few hours.

Day 2

I had a very nice nurse throughout the night. His name was InIn. I remember that because he said it was like 'out out' only with In instead. It made me laugh.

I remember the day through bits and pieces. I slept though most of it. But I do know I was in so much pain everywhere, and I couldn't move barely at all. And they had to keep switching me from side to side and propping my back with pillows. I had about 12 pillows in ICU. My Aunt was there too. She is a nurse at the same hospital, and she was working so she visited me during her breaks and fussed over me, making sure I had the things that the other nurses forgot. She was like a mother who always fusses over their kids when their sick, but one that actually knew what to do. It was a huge comfort to have her there. I think my headache started that day. But it was overshadowed by everything else.

When my roommate came later my aunt was there, and they had me laughing when my Doctor came in and was so excited to see me doing so well. I was so confused by his assessment because it was the only time that day that I felt mildly coherent. But I always get confused in the hospital because every one keeps telling me contradictory statements. They also switched me out of my private room and I was bombarded with all the noises of the ICU and the hyper nurses that are so hard to understand when you have no idea what's going on.
My boyfriend held my hand while I slept again that day too. Then he left and my headache really started to hit me. I didn't sleep well, everything was so noisy and confusing. The nurses all had different accents that I couldn't place because I had trouble thinking. So when everyone came in the next evening to see me I wasn't doing very well at all.

Day 3

I got an email letter from my brother. Apparently you can send a friendly greeting to a patient at that hospital if you have a little bit of info about them, though the messages have to be positive.

My headache turned into a migraine. A low pressure headache, the nurses said I had a sinus infection, but didn't do anything about it, then the doctor said it wasn't and told me that it was a good sign and that it will last for quite sometime. I was not happy to hear that. My roommate tells me that I could barely talk, or at least that I talked so quietly that it was very hard to hear me.
The only reason I was still in ICU with all the noise and the psycho patients was there were no beds in the ward I needed to go to. That and I was still a tad high maintence. I hadn't left the bed yet and could barely sit up, and they still helped me turn over. I was able to talk for small amounts of time and follow conversations for just as long. They did take out the catheter that day, which made things awkward because I self Cath and I couldn't do it in bed, so the nurses had to cath me. Do you know what is stupid? That it is hospitals that teach you how to Cath in the first place, and tell you what supplies and what type of catheters to use, and then when you are in the hospital they rarely have latex free catheters and nothing in your size and they can't order yours in! Tell me where the logic is in that.

I learned how to separate myself from myself when they cathed me, and also when they cleaned me up. I still hadn't washed my hair since Sunday night. My hair was so greasy that it stuck in all directions. But I was still in the state of mind that I really didn't care to much. I wanted to be doing better but I also really wanted to sleep.

The physio people sat me on the edge of my bed, and I was so dizzy I could barely do it. So after a few minutes I laid back down, and my roommate read to me and talked to me. He took the day off so he spent the afternoon with me, and it was great to have him there.

That night was the worst, because all the nurses were fighting with each other, only I couldn't understand why, or what was going on, except that my bed was a no nurse zone, because my nurse had to go through enemy lines to get to me. I was ready to get out of the ICU, and all the lights and noise that just grated through my skull. And my head felt like my was going to explode.

Day 4

The physio people came to visit me again and got me in my chair. It was so hard to sit up and I was so dizzy. I was taking a lot of gravol at the time to try to fight all the nausea that came when ever I moved. But I did slowly wheel around and they showed me where I would transferred to later that day.

So I think it's easy to say that you've been in the hospital way too much, when all the nurses remember you and you get put in the same room and bed that you had the first time you were in that hospital.

But I didn't care, I was about to get out of the ICU into a much more subdued environment! (or so I thought) My aunt came and washed my hair, that felt sooooo good. And I was finally able to keep things in my room. And I was more coherent then I had been in a long time. And I did manage to sit up in bed for longer periods of time. And I could turn myself, even though it did hurt, but I could still do it, and I wasn't giving up an ounce of freedom. I was tired of being sick and out of it, so I was determined to get better. Everyone was supportive and proud of me. And I had more color to my cheeks.

then everyone left and I realized the most horrible thing. MY ROOMMATE SNORED. She snored so badly that again I didn't sleep much and my migraine was even worse. And the nurses kept leaving lights on, and I just wanted to be in pitch black and noise free. UGH!

Day 5

Ever have one of those days where you just wanted everyone to go away? Well that day was one of them, and the day I got the most visitors because they could finally do so because I was no longer in the ICU.

I started getting up to go to the bathroom myself, fighting the nausea each time, then I ate very little then had a nap. Lots and lots of naps. Moving took a lot out of me.

It was nice to finally see people but they kept coming.

So when everyone left I blocked out everything cause I finally got earplugs and was left in peace and quiet, and I just slept and slept and slept. I had the wierdest dreams, but it was so nice to actually have some peace.

Day 6

it was like I was a new person I could transfer easily and I finally got some fresh air. And I got to spend time with my boyfriend. He was so happy to see me doing sooo much better. And well I still felt drained, I could still fight through it, it was great!

My roommate bought me food and I had a chicken Quesadia, and I devoured it, well most of it, I got full fast. Not eating much for a week will do that to you. It was soooo good though. But then it's not hard to make anything taste better then hospital food.

2 crappy things did happen though. My breathing got worse, and my potassium levels were very low despite all the potassium they were shoving down my throat or through my IV.

The potassium thong was scary because one nurse told me if I didn't get my levels up my heart would stop beating. That's a little harsh and by far a worse case senario, but I took my potassium and I ate bananas. But it still wasn't going up. And they wanted to send me home Monday, and as much as I wanted to go home I want to make sure I was safe first.

That night was the first night that I was bored and restless. And my migraine dissipated into a low pressure headache, so still annoying, but I could tolerate normal noises.

Day 7

Sunday Sunday Sunday. I got to shower all on my own it felt great. That and I got a chance to look decent for my boyfriend who was coming to visit me around lunch time. I was very much looking forward to this visit because we could actually go outside and get fresh air, and talk. I hadn't felt like talking too too much the past week, and I finally had a chance to show him how much better I was doing. Only just before he got there my cheerfully adorable nurse came in with three bolusus (bags) of Potassium she wanted to pump through my IV site. And she said it would take three hours. Nothing like pumping a chemical into you arm that burns for three hours to make a girl happy. However I was able to fanagle an hour out of her as long as I took one big fat horse pill of potassium first.

So enter my boyfriend looking adorable. Wearing a color he hates but that I think he looks good in. Now that's love. We went outside to the Magic Tree. It's an open courtyard that they are slowly improving to give sick kids a place to feel comfortable. We sat by the magic tree and hugged and kissed. It was nice to be kissed. I usually don't feel sexy when I'm in the hospital, so being kissed helps take away some of that "I don't feel remotely desirable" mentality you can get stuck in away. Not that I think that people should go around kissing patients. But loved ones should take the time to hold hands and kiss cheeks, and significant others should kiss their loved ones in the hospital from time to time when it's appropriate. It really does help the healing process. When you are sick it's easy to get depressed by your surroundings, and knowing that people care for you helps keep you out of that funk. For the most part anyways.

So back to my boyfriend. hehe. It was a nice hour, which we finished off by playing with stuffed animals in the gift shop. He is so cute with them.

I was feeling really sad when he had to leave, I missed him so much that I couldn't wait till I was better so I could see him more often.

So it was back in my room took get pumped full of crap. So while I was stuck on my bed I began to write to my best friend. When it was done it was 6 pages long.

I think the biggest adventure of the day was when I got my chest XRay I was taking sown to the elevator with trusty IV pole, and once in the elevator, we were told to get out it was being taken over by STARS. So we got to go hang out on the STARS floor. Luckily the other evaluator wasn't be hijacked so we eventually got down to XRAY. My adorable aunt started making fun the people who needs stars on the long weekend, and it didn't help that they were in full dirtbiking gear. Her name for patients who get injured on the longweekend, is Darwin patients because someone was doing something stupid whether it was them or some one who hurt them, in order for the injury to occur in the first place. I find that funny. I guess when you see people get hurt stupidly time and time again you become a tad jaded.

Oh and Sunday really was productive even though I felt crappy, because we also found out that an old friend/ old roommate, just had a heart transplant surgery at the same hospital, so we tracked him down and we got to visit briefly, it's hard to visit in ICU cause only two visitors at a time and they kick you out regularly. But he was looking good for a boy with a bunch of tubes inside him. It's very hard to feel sorry for yourself when you know that a friend just went through something worse. Or apparently worse. I mean I have to admit though I really don't like to at all, that spinal surgery is really nothing to scoff at. I could have died, if I had stopped breathing. And having a hollow spinal cord, filled with water or no, is still pretty scary. But I refuse to admit it. :)

Day 8

My last full day in the hospital. The only reason I wasn't released then was because we want to make sure my potassium levels were normal again. And have one last check up from the doctor to make sure I could move around easily enough so I would be okay at home, and that my lungs were fine. Which they were mostly. I get fluid bubbles in the chest cavity that hurt like hell, but that's a good thing, because that means the shunt is working. In fact everything, the headaches , the nausea, the tingles in my legs bum and tummy, are all good pain. pain that shows I'm healing.
Well all that good pain made me feel like crap. I spent most of the resting and trying not to get sick. I did Have a popsicle with one of my aunts and my cousin who's a nurse who was working that day. It was nice but I wasn't feeling very social. So instead I packed up all the stuff I wanted my roommate to take home...Which was quite a lot. And spent the rest of the day feeling ill. My boyfriend was feeling Ill too so he curled up on my bed and rested with me. It was nice. And none of the nurses complained so that was good too. I was allowed to leave as soon as I had a ride and my paperwork filled out the next morning and boy was I ready to leave.