Hand writing - a dying art.

For those of you who read my blog regularly, you will know that I have hemiparesis on my left side. In the past 10 months, I have worked really hard at building my strength back into my left side and compensating with my right side so that it is not noticeable.

In so many ways now, it is not noticeable. My gross motor skills and strength are excellent. I am possibly the best in my job (and most humble!) at manual handling skills - and by manual handling, I am referring to human beings. Some of the boys are a bit better than me, but for quite a short girl with a slightly weird walk - I am pretty good and I own those skills. I always passed driving requirements, medically speaking.

With my fine motor skills, I am still working on them. I think I am dropping things less than I did. My arm prefers to be bent and my wrist dropped. This is still true, but it is less so than it was. I am working on putting on make up. I am doing this for two reasons.
1) Fine Motor Skills: it's an excellent way to practice my fine motor skills - and just to clarify, I am naturally left handed
2) Self-Esteem. I am not saying you need make up to look and feel good, but in my case I definitely had gotten into a bit of a rut with taking care of myself and this is an exercise that is helping - slowly but surely.

I am also doing activities like straightening my hair - but I am still doing that right handed for the moment, or getting help with them. Slowly but surely.

I had my 21st birthday the other week, and I had a party. It was fun - a clash of different parts of my life, and it was rather a strange and honouring experience. For those who saw on Facebook, I ended up wearing the sparkly silver flats over the jelly shoes - it was a good compromise that my mum and I came to.

Three Best Friends 

"Other Family" - Charmaine's Family. I had done my own make up but had needed help with my hair.

And I was showered with very generous gifts! It was overwhelming and now I am writing thank you notes to everyone for their kindness and for their attendance.

Secret fact about me: I actually have beautiful hand-writing. It isn't well known. Grandmama and Mama keep looking at shock at how neat my hand-writing is. It is taking me a very, very long time to do. It is very difficult to get them to be so neat. I can only two notes before having to take a break. I find it does not only strain my left hand, but my right hand clenches as well.

But - it's such a sense of achievement for me. I can type a blog post in the space of five minutes, but these 20 or so notes will probably take me a week.

And I am going to do it! Just watch me!

My Love for Light Up Sneakers

The other day my life changed forever (I don't think I am being overly dramatic). I discovered happiness I never knew possible (Still not overly dramatic). I was lying in bed, although it was not yet bed time. I was simply not feeling well and took the chance to have a rest, when my Mum came home. She came into my room to say hello and show me what she had bought. I never guessed she had bought something for me.

Out of a box came these gorgeous, sparkly, velcro-tabbed, purple, pink, blue and silver sneakers. I could not say a word. I only gasped and smiled, my love of these shoes knew no boundaries.
Suddenly, Mum turned off my light in my room and threw the shoes on my bed. When they landed, they flashed and lit up. I squealed and squealed. It was like Christmas, Easter and my birthday all in one.

After squealing, squeaking and thanking Mum profusely, I proceeded to text almost everyone I knew to tell them the good news. My conversation with Luke went like this...

She Types Things: LUKE!!! I GOT SNEAKERS AND THEY LIGHT UP AND THEY'RE SPARKLY AND ARE VELCRO TABBED!

Luke: Haha, that's awesome. That's like 5 year old you dream come true.

She Types Things: No. It's more like 20 year old me dream come true.

And it is true. It is a dream come true. I want to wear the shoes to work (I do sometimes, depending on the client), I want to wear them on dates (haha - what dates), and I want to wear them to my 21st birthday (Mum's disapproving look means I probably won't).

I love things like that. I love little things that make me happy. True enough, the other day I went to the shops just to buy some red cordial (I also bought a Scooby Doo toy for $5 because it was just too good not to). I have my nails painted pink. I like to laugh.

Life is too short to be grown up all the time, but that is not the only reason I love my new shoes. I think they should be a physiotherapy tool.

The sneakers light up when they have enough weight on them. They light up on most steps, but if my weight is in the wrong place then it won't. The other thing about it is that it makes me look at where I am placing my weight.

When my sneakers only light up on the right side, I know my centre of gravity is too far to the my right. This isn't uncommon for me - I don't often realize I am doing it. But now, thanks to the most awesome sneakers in the world - I do. I am able to fix my walking and bear my weight more evenly.

Therapy is most effective when it is in the form of play.... or fabulous light up sneakers.

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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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I Make My Own Arm Brace

Fun fact about me: I am a university student, I am 20 years old, and while I do work very hard - I have very little money to show for my work. Between trying to enjoy going out for dinner with friends and paying for my car that broke down yesterday, I don't have much money left.

Like a lot of people with disabilities I have plenty of things I want and need. I prioritize. I make sure I buy my meds every month. I try to have money spare in case I need to go to the hospital. I pay for my subscription to my AAC (PogoBoards). I am saving up money to buy a medic alert bracelet. AFOs are in the future. One thing that I started to need, but was not in my budget, was an arm brace for my left arm.

My left arm prefers to be in a bent position, to the point where it is now causing other problems. To make things more complicated, I am left-handed. I need to keep my strength and function in my left hand and arm.

But an arm brace wasn't in my budget. I genuinely live pay cheque to pay cheque.

But I build a lot of things. I have built tools for special school in the past, and now I have built an arm brace for myself using only: plaster wrap, faux fur, cotton, velcro. Only about 10dollars worth of material, and it took me less than a week to make.

That photo shows how it start: a piece of faux fur, with some plaster of paris on top. The faux fur is to stop it from rubbing.

I then covered it with cotton, so that I would not get overly sweaty when wearing the brace. As you can see, there are two braces here - I did it in a clamshell style design.

And this is the final product. Is it neat and tidy? Definitely not, Does it look professional? Nope.

But it was cheap, it was easy and it works. I also personally like the pink and blue with white stars. 

I try to wear the brace everyday. It's not enjoyable wearing it, but it is for a better purpose.

Disability: inspiring creativity.

My Friend's Disability Pisses Me Off

One of my greatest friends is named Rebecca. She and I get along for many reasons; for example, we just spent Valentine's Day watching Despicable Me together - and neither of us could really imagine anything better. Rebecca is a wonderfully supportive human being, and we tend to agree a lot on a lot of things - but there is one thing we will never agree on.

Rebecca uses a GPS to navigate everywhere. I never, ever use them. I am an old fashioned lady.

(Yep. Pretty close approximation to what I see in the mirror).

I would much rather look up on a map (Google maps, I'm not THAT old fashioned), and know where I am going whereas Rebecca can blindly trust the talking machine. I can rely on my sense of direction fairly accurately whereas Rebecca would end up in outer Mongolia if she attempted to try to rely on hers. We will never agree on the use of the GPS.

And that is okay.

A wise blogger by the name of Mary Evelyn over at What Do You Do, Dear? recently wrote about her son getting his new wheelchair and in the post she said that "[he] only needed the right tools. Just like you and me". Of course, Mary Evelyn with her wise words has caused me to think. Well done, M.E.

We do all need different tools. For Rebecca, it is the GPS. For me, I'd rather a proper map. 

I have other friends as well as Rebecca. One of my other friends is named Heidi. Heidi and me have been friends since high school. Throughout life, I was a dancer and Heidi was a musician. Then fate dealt a cruel hand.

Within twenty-four hours of each other, I lost function of the left side of my body and never properly regained it. Heidi lost hearing in her left ear. She has never regained it.

I am angry at my friend's disability. 

I think it is unfair. I also think it could've possibly been reversed with hyperbaric treatment. My mum is a hyperbaric specialist and has successfully reverse multiple cases of sudden onset hearing loss. I think it would've been at least worth a try. My mum was very keen to try. But by the time Heidi was properly diagnosed, it was too late. I am angry and frustrated that my mum and I didn't fight harder; we didn't talk to her parents; we didn't really believe what was happening... 

She wears a hearing aid now. She only got it recently.

We only need the right tools.

I still make sure I go outside and dance in the rain. Heidi can still play music, she adapted. We learn to adapt: it's the name of the game.

What tools especially help you get through life? (Red wine is an acceptable answer...)

I have a crush (I am disabled, not dead)

Today was an absolutely awesome day, it honestly was. Today, I got my geek on and went to a Red Dwarf Convention. I know, I know. I was amongst all the other people rattling off their sci-fi knowledge and I felt like a bit of an imposter...

The truth is... the only sci-fi show I even watch is Red Dwarf.

It was an expensive day, and getting photographs was expensive too. I had to choose wisely who I wanted to have my photograph taken with as it was 40 dollars a pop and I had already spent a lot to get into the convention. I am not sure I can admit how much I spent to get into the convention: I justify it with the fact that my brother has just gotten back from six months overseas and it was a good way for us to spend some time together...

I chose to have my photo taken with Hattie Hayridge. Although it is a tough call, I think she is ultimately my favourite from Red Dwarf and I was very excited to meet her. I asked her "May I please hug you?" when I first met her, then we had a chat. She admired my glasses, I in return told her how much I admired her comedic style. I was very glad that my aphasia was not so bad today.

Meeting an idol: my favourite comedian, Hattie Hayridge.

 

This really overshadowed everything else that happened today. The fact that I walked down the stairs independently, without a stair rail or another person - something I have not been able to do for a long time - seemed pointless. Don't get me wrong; I was thrilled, it's a massive achievement. But Hattie Hayridge comes once in a lifetime. I'm going to try the stairs again tomorrow. I was texting a friend about it all and the conversation went like this:

Friend: "I am in agony from the high heels last night"

Me: "I know, my feet hurt too. I can't even feel my left toes. But it doesn't even matter. I walked down the stairs independently and - wait for it - I JUST MET HATTIE HAYRIDGE"

Friend: "What? You don't have feeling in your left foot?"

Me: "Yeah. From the shoes. It's not important. I met Hattie Hayridge"

Friend: "You can't walk down the stairs? Go back to that part"

Me: "No I said I can. Without person or rail. But it doesn't matter, I just met Hattie Hayridge"

And then she got the idea and proceeded to ask me appropriate questions about Hattie Hayridge.
It's not that I don't appreciate that I have concerned friends, but guys, I'm normal too. Hattie Hayridge comes once in a lifetime. My left foot hurts because I wore pretty shoes last night, and my left foot is a size bigger than my right. It's not a medical issue. Guys - I met Hattie Hayridge today.

The first conclusion for why something is wrong is not always disability related. Recently, when feeling sad, it has not been all because of coming to terms with things related to disability. It has been because of something far more typical 20 year old related.

I like someone. I have a crush on someone. Fairly sure they don't/can't/won't/shouldn't/couldn't/allthenegative like me back. #unrequitedlove

I don't want to say too much on it - mostly because I'm worried they read this blog. But I'm not so disabled that I don't get crushes on people. I'm not so disabled that I don't get upset when people I like don't like me back.

I'm human.

And this Valentines day I will be enjoying being human - by eating chocolate, all by myself, and not feeling guilty about it. Some of us have companion, some of us have chocolate. Between you and me, I have no problem with my end of the deal.

Fail, Fail, Win: Beginning to Accept Disability (complete with stickers!)

Some days, I am not good at being a grown up. This is shocking, I realize. Today seems to be one of those days.

As the Australian school year starts back, many of my jobs  swing back into full steam and this was the case today. I think the fail began when I forgot to wear my butterfly hair clips. I definitely failed worse when I had already started driving to work and realized I had forgotten the classroom keys. Then - there was the ultimate moment of failure. 

Dear internet, nobody can be an effective educator unless they employ the use of stickers. 

I had, of course, left my stickers at home. 

Fail. 

I considered for a brief moment explaining to the five year olds that they couldn't get stickers this week, but I would have them next week. The image was not peaceful. I might as well have said I killed the Easter bunny. So, I did the grown-up thing, and stopped at the overpriced news stand and bought some sheets of stickers. 

These suckers cost me almost 15 dollars. 

You've done something like this before. Don't lie to me. Particularly if you are a parent, you have done something like this before and sort of kicked yourself for not being more organized. Maybe you have run out of nappies/diapers and had to pay a million dollars and your left arm for ones at the all-night pharmacy. Maybe you have had to buy formula, like Pediasure, because you have left yours at home and you can just see it; in your mind's eye -  sitting in bulk - at home, and there is nothing you can do about it. Or maybe, just maybe, you've even forked out the money to go to the cinema and you are paying for snacks at the snack bar - just to see your kids happy. (Or to shut them up and stop them whining). (Or because you actually really wanted the popcorn). 

We do things like this for lots of reasons. Occasionally we fail at life and being a grown up. Sometimes we fail for good reasons. Today? I think I was distracted. Recently, I wrote "Dear Internet - I am an Idiot", and (excuse my German) but things have really been scheisse lately. That's the truth of it - there's no way to make it rainbow and bubbly.  There's no need to sugar coat it because what is the point in being dishonest? It has sucked. But, I have learned something I knew all along.

People do want to help you with your load. Think about this: when you see someone struggling with a heavy bag, or carrying lots of groceries, or struggling to push the pram while carrying the nappy bag, the other toddler and all the other paraphanelia - do you want to sit there and just watch? Or do you want to help? Even if you are unable to help, do you not want to do something to help?
 

(Please tell me the answer is you want to help...else we may need to have some more chats... I do have a background in psychology after all...)
 

Once people agree to share the load, very rarely do they pass you over the whole load. More often, we just give over something small - the lightest bag. It's like the grocery bag with the bread and the tissues in it. 

And it's a start. Maybe it just makes your load more manageable - even if your load is heavy, it might be less awkward; more balanced. Soon, they may insist on taking another bag. Or someone might even push the child's pram. Sometimes, when you are tired, people are sneaky - they take some of the load... and you don't even realize they have done it. It's okay for some others to even take the whole load for a little while - between even just a few people the load is so much more lighter and more manageable. Rome wasn't built in a day and it was not built by one single person.
 

So, now, I am feeling better. Genuinely and truthfully, I am feeling better than when I wrote the other week. Because do you know what I have realized? There is a lot that is going on right now that really sucks.

I have also realized something else.

I have a disabling illness.

And -

It's not my fault.

And -

I am also very able.

And -

I am really, really loved.

And for that: I am winning.

Sometimes you need to re-learn things you have known all along.

So I will reward myself. Not all stickers are for 5 year olds.

 

These ones? These are all mine, baby. If loving Scooby-Doo stickers counts as failing as a grown up, then I'm not sure why you would want to be winning.

 

Tell me: go on, tell me, you know you want to. When have you had a "grown up" fail?

 

Never forget to share the load.