Dear Internet: I am an Idiot...yet again

Some days suck. There is no need to put it any other way. Of course, I always try and find the good in all of the days but you are still allowed to say: overall, that day sucked.

Today is one of those days. 

Even as I try type this, my beautiful boxer dog is behaving as an inquisitive toddler and won't let her snout be out of anything except for of course those things she is allowed to have. 

Some of you may have read my recent post about my aunt being in palliative care. Thank you all so much for your support. She is keeping on, her spirits seem bright and my mother has made sure she has about 14 different sets of pyjamas complete with matching bed socks. 

I think that is getting me down a bit today, but it's not the only thing. There is a bit of this stuff still lingering, and superficial though it may seem it is having an effect on me still. The daily stresses of uni and work seem to be piling on and today I was feeling like this:

Except my figure isn't early that good.
Picture Source

But I am not an idiot for feeling like that and I do not need to apologize, I know that much. 

My reasons for being an idiot are similar to the first time, except this time I have been taking my meds like an angel child. 

This doesn't really help if you're not taking the right meds. 

Last time I saw my neurologist, I got a script for a higher level dose of medication. Unwilling to up my medication yet, I was taking one of the higher dose once a day instead of my usual lower dose twice a day. 

It really sort of sucks when you mix up the bottles and start taking the low dose once a day...

Dear Internet: I told you I am an idiot. 

The effects of the lower meds are starting to show. I couldn't make it through uni today. The lack of function of my left side combined with my general feelings of crap, really meant today was not sunshine filled. 

Do you know the feeling of when it is like every step is wading through treacle? You don't need a physical disability to know how that feels. Combine that with a left leg acting like a bung shopping trolley wheel and a left arm that is twisted like a pretzel and it really is a pretty picture. I even have had moments of aphasia when I couldn't think of the English word for wash cloth but I could get the Afrikaans one out (shame nobody in the house spoke Afrikaans).

So, now it's time to reset. It's not an easy task. It's exhausting. I am already exhausted and I feel like the world doesn't understand there is only 24 hours in a day and 7 days in a week (does anyone else feel that way?) but we will get there.

It's okay to need to push reset. We do it with our electronics enough, and it is okay and necessary to do it with ourselves.

I am so grateful for everyone's support - near, far and cyber.

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AAC: Pogo Boards, A Review

Lately I have made the jump to a new AAC (Augmentative and Alternative Communication speech device). Although I do not have to use my AAC to get through most days, when I do need it I definitely need one that works effectively.

It is easy to get frustrated with an AAC. When it is too complicated to use or if it does not have that things you wish to say. 

I have used several AACs. For my own personal use, I have always used AAC apps for the iPad or iPhone. One that I have used for a long period now is "Pogo Boards".

Pogo Boards was a great AAC for me. I was very fond of it, or "her". I affectionately refer to the robotic voice as "LucyPogo". There are many great parts about LucyPogo...

Some of the positives include...

It is fully customizable. You can adjust everything on the Pogo Boards app. All the grids, multiple different voices, different languages and all that. You can adjust the size, the speaking rate, the amount of buttons on the grid...

You can share the boards with friends and the world very easily by saving the folders to global folders. This can be a very useful feature.

You can use the app on multiple devices. With my subscription, I could log into 4 devices at one time. I only ever logged into my iPhone and iPad.

I love any device which uses Text-to-Speech features.Anything where speech doesn't have to be recorded is a good app in my book.

Unlike Proloquo2Go, you have the ability to display a different message from that which is being spoken This was useful particularly with pronunciation.

PogoBoards use SymbolStix and have thousands of icons available.

There are many boards that you can either start with as a basis or use as fully functional boards. Or you can go again by yourself from scratch...

The important messages best friends need to say to each other... the app would never capitalize the L in Luke for some reason...

Pogo Boards can be used for other devices not just for iPad and iPhone. You can also print out the boards you make and use it as a low-tech devices.

The staff are really friendly and quite prompt with their replies. They are also very helpful with providing you with other resources.

It's not a perfect system. If it was, I would probably still be using it. I really do like it. But I also have some problems with it...

You can only edit Pogo boards from your computer. You cannot edit it from your speech device.

It is subscription based. This was a big issue for me. The subscription is not much really, and you can pay monthly, yearly, every two years or every three years. I don't have much money. I seriously don't, I couldn't afford a yearly subscription so I had to go with a monthly subscription. Although it wasn't a lot, it just kept adding up for me and I had to say no.

It is a bit faulty. Sometimes, the system would not let me log into my iPad or iPhone. It would say I had "exceeded my amount of maximum log ins", which wasn't true. It was an easy issue to fix, with a quick email to the the staff. But it was a pain nonetheless.

My home page (an old copy from last year) as it appeared on my iPhone

My Core Page for my iPad

A copy of my "People" page from my iPad

My final thoughts on Pogo Boards? If you are an educator, this is a really good system. The more people you have using the system, the cheaper it gets. It is so customizable and I really set mine up for me. Like all AACs, it took a while to set up and I never perfected it. Unfortunately, the drawbacks of this system for me meant it was time to try something new. More on that soon...

Note: Even as I looked through my photos, I didn't have photos of my latest most customized version. For example my iPad page of people normally has the three chihuahuas from Charmaine's house on it. Because, you know... priorities...

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Palliative Care is Beautiful and I Hate It

My aunt is dying. I have  written that sentence out many times before and I have even said it a few times, with a dull feeling of numb acceptance.

Sometimes I don't know why they have started a new treatment. The other day they started chemotherapy. Do they honestly think it will work? Really?

My aunt is dying.

 

Mum, Me, My Auntie - late 2012.

             

The room is beautiful. There is artwork on the wall and, short of a funeral, I have never seen so many flowers for a single person at one time. I signed to my mum, when my aunt was sleeping just now, "which ones do you like best?" But she replied "I don't know" because it doesn't really matter. They are all beautiful and I hate them all.

The room would've once been a 4 bed ward, back in the day. There is a large and not totally uncomfortable couch, two Regency chairs (think of special needs recliners), another recliner, other chairs - no shortage of space for visitors. My uncle stays here every night and the mattress, as far as I can see, doesn't look like your run of the mill back breaking hospital mattresses. It looks like it may actually fit him and his long legs.

An awkward family photo - my 19th birthday. (Uncle is taking the photo)

      

Nobody writes "get well soon" anymore. Nobody buys those sort of cards. They write that they are always thinking of her and they are sending all their love. Perhaps there are even people praying for her, I don't know.

I know she has had a good life, but it wasn't meant to be like this. Nobody knows what the future holds, but I can assure you this isn't good. She will not attend her son's or nephew's or niece's weddings. I doubt she will see her son or myself reach 21, my birthday is in 5 months time.  Our dogs will both out live her. Her elderly parents will likely outlive her. No grandchildren.

And I simply hate it.

She is so much more than my aunt. She shared the place of mother along with my own mother and maternal grandmother. I could not figure out why I was not one for the general Mothers Day dedications on Facebook, until I realized it didn't feel right until I included all three women. They are all significant in raising me.

We do selfies and gosh don't they look good! This is the photo I use for my Mother's Day dedications. It was taken on Christmas Day, 2011. My Aunt, Mum, Me, and my Grandmama.

My aunt is dying.

Palliative care is beautiful and somewhat serene. But no matter how many flowers or presents people send, no matter how large and comfortable the room and no matter how many prayers are said: my aunt is dying.

And I hate it.

Being Disabled VS Having a Disability

The other night, Mama Sharon (Charmaine's mama) asked me a question and I didn't have a good answer for it. She had been reading my blog and wanted to know, "Why do you see yourself as disabled?"

And I suppose the truth is, I don't.

I think I used the words once for a blog title when speaking about unrequited love on Valentine's day and I wrote "I have a crush (I'm disabled, not dead)" because I think I am super cool when I use catchy titles like that (alliteration for the win!) but generally I don't say I'm disabled because I mostly don't think of myself as disabled.

By all medical accounts, I am disabled - I have been since I was a child and here is why:

As a child I was diagnosed with multiple chronic illnesses, forcing me to miss a lot of school. Cumulatively, I missed over a year and a half of schooling.
I am not disabled because I completed my schooling. I completed it in anyway I could, and I completed it with quite a good mark too. I got into university, and I am almost completed university.


As my neurological symptoms progressed, there is many more reasons I could list as being considered disability related:

• I fail neurological exams on my left side
• I struggle to walk down hills, particularly with uneven terrain
• If I was going into the Hunger Games, I would die (don't lie: you would probably too)
• My arm prefers to be in a bent position
• My fingers do not move fast enough on my left arm to play the piano (well there goes my chances of being the next Mozart!)
• I struggle with aphasia, some times more than others
• I have had friends have to feed me, give me meds, transfer me, and learn sign language for me
• I struggle going along the rows at the movie cinema and in auditoriums
• My left hand has a weak grip - I often drop my keys and other items (don't worry: the iPhone is still in one piece)
• You don't want me on your team for Survivor
• My gait has been documented in many different ways. I mostly refer to it as "just mildly stupid"
• My fine motor skills are lacking on my left side including my hand writing and skills like make up and nail polish. If anyone wants to look like their three-year-old did their make up for them, I have those mad-skills.
• I struggle with aspiration of thin liquids
• I can never leave the house without my AAC and my meds bag

For all intents and purposes, medical professionals would consider me as disabled or someone with a disability.

Then why don't I really think that? Because I don't, not on a daily basis. Yes, I can get pissed off when I can't walk on the sand or something like that. But I don't think "Woe is me, I am disabled." I more think "this is one of the most terrifying things I am trying to do. Left ankle now would be a great time for you to cooperate"

There is a quote by Scott Hamilton: "The only disability in life is a bad attitude"

The truth is... I can't stand that quote. I hate a lot of the pictures that go with it - "inspiration porn", as it is termed. I find that quote offensive. Try telling my friends that if they just changed their attitude their multiple and complex disabilities would disappear; they would suddenly not be mobile and verbal if they saw life a bit more positively. That quote strikes a nerve with me.

But I see what the quote means. I do see the tiny glimmer of truth.

Attitude undoubtedly helps a situation, I have never denied that. You cannot do anything in life if you do not have the will to do it and the belief that it is possible. Recently, I did change my attitude. I was in a position to decide I could improve. I had the support of close friends. Here are the ways in which I have improved:

• I can walk down stairs independently
• Not only can I walk down the stairs independently: I can assist Charmaine down the stairs with no trouble.
• I have mad typing skills. I am not even sure how I do it, but I am fairly sure I use the ring finger of my left hand a lot (whereas I used to use my pointer finger).
• I can sit on stools and chairs without backs
• I can cut my food easily using a knife and fork
• I would push you off the cliff in the Hunger Games first, so I would hopefully not be the FIRST to die
• I drive very confidently
• I have gross motor strength.
• My gait is now "mostly not stupid"
• I have an ability to communicate always, one way or another. My friends know the important signs, including all the swear words.
• Although I still prefer to sit cross-legged, I can sit comfortably in other positions
• I take Epilepsy medication and that has helped a lot
• I have CONFIDENCE to do so much more now
• When people don't treat me as though I am disabled, then I am not.

I might have a disability, in all official accounts. But the very term disability says not being able to do something. I can do everything I want to do - I always find a way. I mightn't be able to shuffle into the middle of the cinema row, but I can sit on the edge. The movie is just as good there. I use a friend's arm to help me walk on the beach - the beach is just as beautiful, potentially even more so when you are in the company of those who you love.

The disabilities don't disable me, really. Because I have my life. I do what I want and achieve a lot. I have always said I will, and I can. I recently made the active choice to not accept the motor neurological deterioration the doctors were seeing. A most beautiful friend said to me "Good. Because you still have a lot of life left to live".

She's right. I do.

I am always finding ways to improve. The other day, I carried one plate in each hand. These plates were heavy, I almost dropped them, but I didn't - well done left wrist. My friends are always fixing my left arm when they see it bend or twisted in a position it should not be in, when I don't notice it.

If my disabilities don't stop me from being able to do anything I dream of, are they really disabilities?

If I can work a way around them to live my life, am I actually disabled?

Or is that just what society says?

In other news, I am changing my AAC. More on that soon...

Charmaine Wants Tea, Please

The other night, I was over at Charmaine’s house. For those who don’t know who Charmaine is, I highly recommend you read this post before you continue. Don’t worry, I’ll wait for you until you get back...

Excellent, now that you’re all caught up we can continue.

The other night, I was over at Charmaine’s house. Her mum and her dad were there too, oh and for anyone who is wondering the chihuahua puppies have been born! 

That is one of the puppies in my hand. For a frame of reference, I can pick up the mama dog easily with one hand.

Sam, Charmaine’s oldest sister and Maria, one of the “acquired German daughters” (Charmaine’s live-in carer and OT for the year) had gone out for the night. It was quite pleasant a night. The four of us were relaxing with the television on. Dad was very tired after a long day at work, Mama was working on the computer, and my mind was elsewhere thinking about my German exam at university the next day while mindlessly stroking one of the dogs.

Then something very important happened.

I don’t even know how this happened. Charmaine and I weren't actively practicing any sign language or doing speech therapy. She wanted something, I could tell that much. She was asking her dad for a mobile phone and I knew that's what she meant, but given what she was signing, she could've been asking to phone someone.  So I turned to her and asked, using speech and sign: “Do you want one?”

She picked up on my signs and started to respond with signing for “I want”

But… suddenly we heard from her, clearly speaking: “I want”.

What was that?

Charmaine has a limited verbal vocabulary. She understands the world around her very well, and also knows what she would like to say very well but is afflicted with aphasia and apraxia of speech. Some of her words, with therapy and practice include: Charmaine, Mama, Papa, Sam, Maria, Lala (what she called her previous carer: to be fair, Claudia is a lot of phonemes), Tea, Fish, Shower, Thank You, Sorry, Oops! and a few others including my name. She also can say “How are you?” or if asked how she is she can respond with, “Fine, how are you?”. She also can say “I love you”. Her two most recent words are: why and awesome.

But suddenly, while signing, the speaking just tumbled out “I want”.

We were all silent and then Dad said: “Say it again, Charmaine”. There was almost a sense of disbelief. You could feel the anticipation hanging in the atmosphere.

“I want”

Well there was no disbelief then.
The cheers were immense; the celebration was huge.

“Charmaine say, “I want tea please” her Dad prompted

Without hesitation and clearly, Charmaine said it.
We filmed it. There was squealing. It feels like a piece of the puzzle has been put in and it has fit smoothly.
I messaged my own mother with the good news, my teacher from special school and my four closest friends. All of them appreciated this immense achievement and sent back messages ranging from "that's fantastic, Charmaine!" to "f***ing PHENOMENAL!!!!!"

Later that night, Charmaine actually wanted tea and she simply said as she always does “tea”, but after a quick reminder to say a sentence it happened again:

“I want tea, please”

It is a thrill to hear her speak.

And then she looked at me and said my name, and with a little bit of help said "want tea please", and I am never going to say no to tea!

That night, she could’ve had twenty cups of tea and nobody would’ve objected.

We talk about inchstones and we talk about milestones. This was a milestone.

Please, grab some tea and celebrate with Charmaine and me! Celebrate your own, your friend's or your children's milestones and inchstones with us! 

Charmaine and She Types Things: Charmaine, very proud of herself and Me, very, very proud of her.

"It's a miracle I look this good after everything I have been through..."

I have been trying to write this post for a while. I know it won't be the only post on this topic, but I still never knew what to write. Now, as I sit in my university common room - having left my books at home like a fool and considering that 9:30am is too early for lunch - I think I have the words figured out.

Like most people in this world, I love going to my best friends house. There are many great things at my best friends house. I have my "second family", "other mother", my favourite kind of tea, multiple best friends, all the animals I could ever want (including, any day now, chihuahua puppies) and there is always Pepsi Max. 

And whenever I go into the bathroom of this wonderful house, I see a sign that says: "It's a miracle I look this good after everything I have been through".

And do you know what? This is completely true. Dad, Mum, oldest daughter, extra German daughters and their youngest daughter, Charmaine, are all hot to trot.

....it's a miracle they all look this good after everything they have been through. 

Dear internet: I would like to introduce you to one of my best friends, Charmaine.

I honestly am not sure where to begin to describe Charmaine. The wise words of Julie Andrews say "let's start at the very beginning; a very good place to start". To be honest, I'm not even sure where that is. 

Charmaine is one of the most loving and empathetic people I know. She has a very special way of connecting with people and the world around her. I think it is a gift. She's hilarious, crazy and fun. She can be damn cheeky. In many ways she's just like me in the way that she is a young woman, we live in the same area , and we both have dreams and goals in our lives. Charmaine has a disability, too - in fact, I would say she has more than one.

Charmaine was in a traumatic car accident a little over two years ago. She was not supposed to her survive, at all. When she did survive, she was not supposed to walk, talk, understand language, recognize people or be able to swallow again. 

Charmaine has exceeded these expectations, a thousandfold. Through the love and support of her family, friends and medical team; damn hard work; and things that simply cannot be explained by medical science, which we attribute to the grace of God. Charmaine eats. Charmaine is learning to walk again, she can walk with assistance or with a walker. Charmaine understands the world around her and can respond effectively through speech or another method. Charmaine knows who others are in her life -- and she loves them. Charmaine is still always improving.

I love this entire family beyond what I can say. Though I am normally cynical and a harsh realist, I do soften for a moment and believe that special friendships like this are when one soul joins across two bodies. When I think of Charmaine, it has occurred to me that her right side does not work effectively; and my left side is deficient. Together, we work as one. Some people come into our lives for a reason and some friendships are simply meant to be. I am lucky to be accepted into such a damn good looking family. I am thankful that they take me as I am, disability and all. That is a level of acceptance that I'm still not used to, and I appreciate so much.

Recently, I wrote that "Disability is not normal" and as soon as I wrote it, I wasn't sure I really thought it was true. I have a disability. Charmaine has a disability. Yet, I feel like we are both normal.

We are both more than our disability, absolutely. I am definitely all for person-focused and person-first language and thinking. But our disability is an intrinsic part of us - Charmaine's is more than mine, and that's just the truth of it. We cannot go through a day in our life without our disability being a part of it.

 But, Charmaine is normal to me. When I am with her, I feel normal.

We are friends. That is what matters. What the rest of society thinks of our disability becomes irrelevant - in that house, in that family - we are normal. Disability is accepted so much that we are given permission to be normal. Even when we are out in public together, I don't notice people staring until I consciously look. Disability isn't normal - I stand by that. But people are. And sometimes disability can be so accepted that whether it is normal or not: it doesn't matter. When it is accepted, it is no longer an issue. It mightn't be normal, but it can be okay.

Charmaine makes me feel normal, and her sister Sam once said to me that I make Charmaine feel normal. We are friends, there are no labels.

And we are damn good looking, too.

Charmaine - I love you.