Karma

I do an art class at TAFE and most of the other students are great but there is one who has been nothing but an issue since the very first day I joined the class. For Example, the very first night I joined the class the first thing she said to me was "why are you in a wheelchair?" She did not even ask my name. Anyway the other day at break she turns around and says to me, "Karma is the reason you are disabled". I was absolutely dumbfounded and did not know what to say.

grateful

This post was written in response to a comment that I should be grateful for what I have and not whine about having different abilities.

I am lucky and blessed in so many ways. Compared to most people I know I am relatively unaffected by the CP. Sure, I use a wheelchair to get around and have difficulty with fine motor tasks and there are times when I cannot transfer by myself but there is so much that I can do and this has given me opportunities that many people with CP don’t have. I can communicate and function without a lot of physical support (I can feed myself and take myself to the toilet as long as it is set up with rails etc). I understand that I am lucky in these ways and I think I show that by not complaining about the things that I cant do yet society seems to be set on reminding me of this fact at every chance it can.

Take the other day for example. I had traveled into a nearby city. I had some shopping to do so we hit the shops for a couple of hours and in that time I had no less than 11 people tell me I was lucky because of something in relation to my different abilities (I don’t like the word disability). Your so lucky to have that wheelchair was a common comment. I wish I had one was another. I’m not quite sure why people think it is so great to have a wheelchair, mostly I think they were tired of walking around the shops, but I just wish they would be careful what they wish for: it might just happen to them one day. I guess if this happened to some of the more influential people (a politician for example) that have made similar comments to me then it could be a good thing because I bet that services for people with different abilities would be greatly improved if those people who control such services needed them. Am I being selfish to think this way? I hope not for I am truly grateful that I have had the opportunities I have had- I just want to ensure that I have more in the future and that future generations do as well.

30 Things You Might Not Know About My Illness...

1. The illness I live with is: Vasculitis of an unknown type. Cerebral Palsy and a bunch of other small conditions such as allergies and asthma.
2. I was diagnosed with it in the year: Cerebral palsy- officially from about a year old but my parents knew something was wrong way before that. The Vasculitis was diagnosed in 2008.
3. But I had symptoms since: 2005, It started off as skin lesiens on the back of each leg and a general
4. The biggest adjustment I’ve had to make is: Relying on carers and parents for more than I ever have before and recognising I have yet another new ‘normal’.
5. Most people assume: That because I look ok or because I have a smile on my face I must be ok... This is generally far from the truth... 6. The hardest part about mornings are: I have to psych myself to get up knowing full well that once I do I am going to be setting off pain as well... I have to build up courage to fight!

7. My favorite medical TV show is: ER and House!
8. A gadget I couldn’t live without is: My Computer -- Its my lifeline to the outside world!!!!! And my and wheelchair too of course!!

9. The hardest part about nights are: They are soo long. Most nights I have trouble falling asleep and then can’t stay asleep for more than 1 hr at a time.
10.Each day I take: A number of pills. Some days I take more than others and each day the side effects seem to be different.
11. Regarding alternative treatments I: have tried some but not all... Some would only make it worse!

12. If I had to choose between an invisible illness or visible I would choose: Well, because I am in a wheelchair its visible to a degree but Vasculitis is classified a hidden illness...There are MANY levels and degrees of mobility, disability and pain in this disease. EVERYONE is different... Many people do not understand why there is so much riggamorile around getting out... Why I can not always get out or have to pull out on people at last minute... It sux but its the way it is... Sometimes I'm just not well enough to get out no matter how much I try to push myself...

13. Regarding working and career: I really want to work but need to find something really flexible (perhaps work from home) because of my medical issues.
14. People would be surprised to know: How much it takes me to just "get out", or even function on the level that I do

15. The hardest thing to accept about my new reality has been: Not being able to do so many of the things I love! And accepting (and getting other people to understand) that I have more limitations now.
16. Something I never thought I could do with my illness that I did was: Endure being constantly criticised and critiqued despite doing my best without taking it personally to the point of dragging me down and not caring what others think when they don’t have nice things to say or pass unfair judgement... It just makes me more determined than ever to prove them wrong!!

17. The commercials about my illness: Are non existent...

18. Something I really miss doing since I was diagnosed is: If I let myself go down this track the list would be endless but a few things are horse riding, my pt program, guitar lessons.
19. It was really hard to have to give up: Even more of my independence.

20. A new hobby I have taken up since my diagnosis is: CaringBridge! Updating my journal, following others and signing guest books! I have also started searching out, studying and researching a whole host of things more in depth!

21. If I could have one day of feeling normal again I would: Go out and have an action packed fun filled day fulled with all the activites I used to love... rock climbing being one of them!

22. My illness has taught me: That I can still make an impact and difference with my life in spite of my situation and limitations.
23. Want to know a secret? One thing people say that gets under my skin is: "You look sooo well - you must be feeling great/ getting better" and “But you don’t look sick” or you are just fat
24. But I love it when people: Treat me as normal and visit me in spite of, take time to talk with me. Hang out with me and make an effort and are willing to accommodate for me! I'm blessed to have friends who have stuck around and encouraged me when I've felt really flat and haven't made me feel guilty when I have had to cancel out last minute... Which is something I hate to do.

25. My favorite motto, scripture, quote that gets me through tough times is: Placing one foot in front of the other, I've climbed to higher lengths. Reaching beyond my own limitations, to show my inner strength. No obstacle too hard, for this warrior to overcome. I'm just a man on a mission, to prove my disability hasn't won.
-- Robert M. Hensel

26. When someone is diagnosed I’d like to tell them: To fight
for their treatment... To hang in there no matter what and to never give up hope!!

27. Something that has surprised me about living with an illness is: How much I have to justify my mental state to insurance as they try to find ways to disqualify me from their services... And how quickly people jump to their own conclusions or try and pass judgement. You really are your best advocate and you have to keep fighting no matter what when it comes to insurances!!

28. The nicest thing someone did for me when I wasn’t feeling well was: Be there for me and messages on my blog and caringbridge page.

29. I’m involved with Invisible Illness Week because:I want to create and spread awareness... You can not always judge on outward appearances...
30. The fact that you read this list makes me feel: That you care... That you took the time to read this and understand a bit more about things in my world!

Spoon Theory

This is long but well worth the read. Insert Vasculitis and/or Cerebral Palsy where the author says Lupus and this would apply to me.

The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons.
then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".
© 2003 by Christine Miserandino Butyoudontlooksick.com

Care vs independence

I am only one; but still I am one. I cannot do everything, but still I can do something. I will not refuse to do the something I can do.
-- Helen Keller

This quote really grabbed me today. In being treated with the Methotrexate I am not able to do some of the things I could before (mostly due to fatigue and nausea) and some of the things I can do I cannot do as well as I used too. I'm struggling with the fact I'm less independent now than I ever was and there are big changes happening with my care situation and also my parents lives. I might be forced to move and will be relying on carers more and more. Its not something I like but I see very little I can do about it. Finding the balance between what I can do for myself and what I need help with has suddenly became hard.

The bus stops and the girl climbs on board. The girl doesn’t mind having to stand near the open window. She feels as if she might melt. Children cry as their ice-creams form a sticky puddle on their laps. An old man reads the newspaper. The women on the bus gossip about Bill and Monica. As time passes the other passengers loose interest in their conversations and begin to look around them. They all stare at the girl. Some smile. Some sneer. Others just continue to stare.

The journey continues. Passengers get off the bus. Passengers get on. It doesn’t matter. They all stare. Some even whisper to their friends. Still the girl stands silently. At times the comments get so loud and so rude that the girl wishes she could go and punch the people in the mouth. But she knows she can’t. She must be silent. Invisible. It makes her blood boil faster than lava, but she is helpless.

At the next stop the people that climb on the bus are friendly and start a conversation with the girl.
‘Hot today isn’t it?’
‘Yeah’ says the girl.
It has been too long for this. There are too many forgotten years. The girl just smiles at the people until the bus begins to slow. As the girl gets off the bus she overhears a conversation between two children.
‘That lady standing by the window looked funny’
‘I’m glad we ignored her, she scared me.’
That’s the story of my life thinks the girl as she walks away in her walking frame.

The girl in the story has Cerebral Palsy. Cerebral Palsy is a disorder of muscle control which results from some damage to part of the brain. It can affect people in many different ways, which can be both mental and physical or either mental or physical. For example, in my case my legs and my right arm are affected by the Cerebral Palsy but I am lucky and have not been affected mentally by the Cerebral Palsy. Others are not so lucky. They may be so severely affected by the Cerebral Palsy that they are unable to go to school or care for themselves in any way.

It doesn’t really matter how a person with Cerebral Palsy is affected by the disorder most people are treated by society in much the same way. (Having said this, however I do not mean that all people treat people with Cerebral Palsy this way.) Some people seem to think that a person with any kind of disability has a mental disability. This is a common assumption with Cerebral Palsy because more than half of the world’s Cerebral Palsy sufferers are affected mentally by the disorder.

However there are many organisations (such as Interchange and Yorralla) in Australia that can help sufferers of Cerebral palsy (or any other disability) to gain independence. These organisations can help people with many skills including personal care, shopping, and meal preparation and can also provide personal assistants who can help a disabled person to gain an education. The services these organisations provide are vital to the life of a disabled person because they enable the disabled person to have a “normal” life and attend school or work and also be involved in the community. To be considered “normal” by today’s society means to be accepted by today’s society. Acceptance is what we all crave and these organisation’s help a disabled person to gain some acceptance but there is a long way to go before total acceptance of a disabled person is achieved. This is illustrated by the reaction of the passengers on the bus when they realised the girl standing near the window was disabled. Not many of the passengers on the bus would talk to the girl who was standing by the window in her walking frame. The only people who would talk to the girl came on the bus towards the end of the journey and then had difficulty making conversation with the girl. If the girl was not disabled the passengers on the bus may not have had any trouble making conversation with the girl. The girl also had trouble making conversation with the other passengers on the bus. The fact that the narrator of the story suggests that “it has been too long for this. There are too many forgotten years.” Suggests that like many other disabled people the girl is so used to being treated badly that she does not know how to react when people are nice to her. These kinds of problems can make disabled people feel even more alienated from the rest of the world. The best way to overcome this problem is to educate the ‘normal’ people of the world in order to try and make them understand that disabled people are just people who may take a little longer than a ‘normal’ person to achieve some of their goals. If we can do this then maybe the ‘normal’ people will be more accepting of the disabled and then we can all live in harmony.

I would like to remind all the ‘normal’ people out there that it’s not what’s on the outside that counts but what’s on the inside. So as a final reminder from my pearls of wisdom as some great literary person said ‘don’t judge a book by its cover.’

My Journey

For Today's Talk About Tuesday I thought I'd talk about my journey as a person with disabilities. More Talk About Tuesday posts can be found here.

For everything you have missed, you have gained something else, and for everything you gain, you lose something else.
Ralph Waldo Emerson

Nobody can bring you peace but yourself.
Ralph Waldo Emerson

Don't be afraid to go after what you want to do, and what you want to be.
But don't be afraid to be willing to pay the price."
Lane Frost

These quotes have me thinking today. What is the price of the inner peace I crave? Will I ever find it? One day but until then I must remember that Life is short, break the rules, forgive quickly, kiss slowly, love truly, laugh uncontrollably, and never regret anything that made you smile (from an email).
In particular, the quote from Lane Frost relates to the way I see myself and my journey with my disabilities. I have to work harder than many people to get to wear I am today but I am not afraid of that but I wonder sometimes at what cost I have done that and to whom that cost was? Myself or society? Sometimes I wonder if I would be better off if I had bowed to societies’ expectations that I can’t do anything because of my disabilities or that I should/could use my disabilities as an excuse to do as little as I can. But then, I think about the opportunities I have had either because of the fact that I see myself as ‘normal’ and try to act (and be treated that way) as much as possible, or things that I have gotten to do as a direct result of my disabilities, and I realise how lucky I am.

Some of my experiences have happened later in life than they do for other people but they happen anyway and I guess they are more special because I have had to wait.

carers

I have been given extra funding for respite carers and as a result will have carers 5 days a week plus extra time for outings such as ten pin bowling. I am not sure how I feel about this. On the one hand, the carers allow me independence from my parents and gives me the opportunity to do stuff that I might not always be able to do otherwise.

On the other hand, having the carers come in each day means I am stuck waiting for carers to arrive before I can truly begin my day and what the routine will be depends on who my carers will be each day as there are certain tasks that only certain carers will do. I will have no day to sleep in or do whatever I want when I want in the mornings.

Don't get me wrong, I am grateful for the carers and the opportunities they give me but I do miss the freedom of my life before carers. It's a fine line and one that I'm still struggling to walk.

update on lucky

I was asked to see the manager of the TAFE today as apparently the Art teacher complained about my conduct on Friday. I explained what happened and that this was not the first time we'd had a similar conversation (and my own teacher and class mates were able to back me up) and the manager decided that the Art teacher overreacted and that I was justified in what I said. I am quite relieved as they could have suspended me from TAFE over all this.

Lucky

Today is blogging against disablism day 2009 which I find ironic considering what happened to me today. On Fridays I attend the local TAFE. It is a very small place so I know most of the teachers and students fairly well. At break time the art teacher came up to me and said (as she has many times before)“ You’re so lucky to have that chair, I wish I had one” I asked why she thought I was so lucky and she said “You don’t have to deal with crowds, you don’t have to walk around and you get to sit down all day”.

I wasn’t sure what to say and sort of sat there with my mouth hanging open for a second. I then said. “ it sounds like you must be having a bad day but think about some of the stuff I have to deal with because of the chair. I need help doing simple things like opening doors and I have to deal with people staring and treating me like I cannot talk or do anything because I am in a chair. Take a ride in my wheels for a week then tell me I’m lucky. And by the way you have a sore rear end when you sit on it all day without really moving”. She very quickly left the room and I’ll bet she thinks twice before deciding people are lucky to have wheelchairs from now on. I feel a bit bad now and that I sort of overreacted but it isn’t the first time she has said something and I just had enough.

Table Tennis

On Monday night I attended a come and try night for table tennis about an hour away from where I live. The program is designed for people with varying abilities and skill levels but as is the case at most of the things like this that I attend, I was the only wheelchair user.

When my carer and I arrived I introduced myself to the person who seemed to be in charge and then explained that I had never played table tennis before. The guy looked at me in my wheelchair and was immediately negative “ your chair won’t fit through the gates here” and suggested that maybe they would set me up in another room. I thought that would be stupid as the nights are supposed to be a social opportunity as well. So I suggested that we try the gate and I fitted. The guy decided he would play with me but only did so for about 5 minutes before leaving me. I stood around a fair while before somebody else came to play with me.

We played for about 20 minutes and then they guy in charge came back over and spoke to my carer. “Being in the chair Karen won’t be able to participate in the last 15 minutes. Take her over there and let her watch”. The last 15 minutes consisted of everyone lining up and taking one turn at hitting the ball before going to the back of the line- the line would then be gone back through with a person being eliminated until there was a winner left.

There was no reason why I couldn’t have moved trough the line with the help of my carer. I felt like they just didn’t want to include me which was kind of strange when the time is supposed to be about including people of all abilities not just those with intellectual disabilities.

So all in all, while the table tennis was fun I don't think its the right place for me and I will continue my search for a new hobby.

Blessed

I am lucky and blessed in so many ways. Compared to most people I know I am relatively unaffected by the CP. Sure, I use a wheelchair to get around and have difficulty with fine motor tasks and there are times when I cannot transfer by myself but there is so much that I can do and this has given me opportunities that many people with CP don’t have. I can communicate and function without a lot of physical support (I can feed myself and take myself to the toilet as long as it is set up with rails etc). I understand that I am lucky in these ways and I think I show that by not complaining about the things that I cant do yet society seems to be set on reminding me of this fact at every chance it can.
Take the other day for example. I had travelled into a nearby city. I had some shopping to do so we hit the shops for a couple of hours and in that time I had no less than 11 people tell me I was lucky because of something in relation to my different abilities (I don’t like the word disability). Your so lucky to have that wheelchair was a common comment. I wish I had one was another. I’m not quite sure why people think it is so great to have a wheelchair, mostly I think they were tired of walking around the shops, but I just wish they would be careful what they wish for: it might just happen to them one day. I guess if this happened to some of the more influential people (a politician for example) that have made similar comments to me then it could be a good thing because I bet that services for people with different abilities would be greatly improved if those people who control such services needed them. Am I being selfish to think this way? I hope not for I am truly grateful that I have had the opportunities I have had- I just want to ensure that I have more in the future and that future generations do as well.