Maybe I will finally read the search…

I had just bought a Mac and picked it up a few days before, took it my mums house and we were sitting around the table looking at the screen. Mum opened up safari, she wanted to check “how fast google was”, I mean it must be different on a Mac to her iPad right? She started to type “Logopenic Primary Progressive Aphasia” and bookmarked the google search to my favourites bar, she turned the screen back to me and said “that’s what dad has.” Gently she said the words, but they still hit me like a steam train right in the gut – within seconds I had lost that gooey “I just bought something new” glow and came crashing back to that sticky old mucky feeling of “F**k, what hell do we do now”.

Dad had been unwell for a little while and at first we didn’t know. It started off kind of endearing, he would forget little things here and there. Start a sentence and never finish it. Put the kettle on and flick the lid up (cause my sister hated the whistle it made) and then completely forget he had put it on at all, until one of us found the kettle with the water almost completely gone still on the stove. We had only really begun to take notice of this when dad was probably three years into his decline, see early on it kind of seems normal – it creeps in slowly like a trickle, you sort of don’t notice it. But three years down the track…. things were getting worse and we were really starting to see the strain on dad. My mother, my sister and I, had many thoughts on what a possible diagnosis could be, which we all tried to explore, over and over we began to search, we couldn’t understand it. Retrospectively, we all came to the conclusion around the same time, in fact I think my mum sort of got there first, but I think we could all see the writing on the wall. Within months, it was confirmed by dad’s Neurologist.

Logopenic Primary Progressive Aphasia is a variant of Alzheimer’s disease- at least that’s what the first result on mum’s google search had told me. Mum had saved the search so that I could go back in my own time and start to learn a little bit more about it… it has been 18 months since she saved that search and I still have not gone and read any more about this diagnosis that is slowly stealing my father from me. I don’t want to know what is going to happen in six months time, I’m trying hard to focus in the moment, each and everyone I can steal before he goes.

What makes dad’s diagnosis so hard, is that he has Early on-setas well. Dad was only 57 when he was first diagnosed and at the age of 59 now, only a few months away from 60, I can honestly say, when he thought about retirement, this was never what he pictured. Our family feels so young, I feel so young, at 26 it is strange to think about making decisions which are going to impact the rest of someone’s life.

I listen to my friends and people my age, talk about their weekends and how they have had a fight with their parents because they didn’t get to wear what they wanted when they left the house, or they came home to late, or they fought about where your life is going, or what I am going to do next, or how should I go back to university and finish off the course I have been deferring for two years…. etc…. it all seems so futile… and here I am… lost… wondering if when I go over to mum and dads for a cup of coffee, will dad remember my name? Will he recongise me? Will he be able to get up and walk today?

Almost every day, I turn my Mac on and I open Safari and those words stare at me, “Logopenic Primary Progressive Aphasia”, maybe tomorrow I will finally read the articles that come up on the screen. Maybe, I will start with just one.

 

Valuing your Self Worth.

I could see she was trying to help, “value your self worth” she said.
I didn’t take much notice of the phrase when she said it and it’s certainly something many people have said to me before, but this time seemed to hit home. I’m just not sure why.

I enjoy my job, in fact I love it. It is like my little baby, I have a role that with in a small structure, I get to work totally autonomously. I make my schedule, I come and go as I please, so long as the work gets done. I enjoy the team I lead and the people I work for.

Quite often than not, we have one role that has been very transient in nature in the sense, that we can’t seem to hold down a dedicated staff member. In the three years I have been here we have seen at least ten people in this role if not more (but that is a story for another time). As a result, I am quite often doing two jobs at once. Do I get paid extra? No. I don’t get extra time or space to account for the second job and it is very rare that I ever get overtime. My contract has this very ambiguous statement in it that, “working every second Saturday and every other Saturday where required” which has meant for the last 2 and a 1/2 years, working every Saturday. In fact in the 2 and a 1/2 years I have had a total of 13 Saturdays off with six of them being force annual leave and public holidays.

My sister says it all the time, I call her/my parents as I drive home each day, often at odd hours of the night and I hear my sister in the background every night, “if you only get paid till 5:30pm why the hell are you staying there?”.

My partner says it too. “What time will you be home babe?”, he says. “Oh, normal time”, I reply. Through conditioning of my constantly late arrivals he knows not to have dinner ready before 8pm. I simple won’t be there to eat it.

No one is tying me to chair or forcing me to stay but I seem to have this unspoken yearn to be there and push myself.

But when she turned around to me and said “it’s about valuing your self worth” and I finally took the time to absorb it and take it in. I realised how self destructive I had been.

So in taking the time to impress everyone, help everyone and never say no- I had disempowered myself. I had made people believe that my time was not worthy. Those I love, who had passed comment were often ignored or shunted away. I didn’t want to hear it- I am trying to build a career here!!

Then I realised, I am here- I started my career roughly 4 years ago and I started as a receptionist and grew to a department head. I had made it, what was I still fighting for? Why am I still working the same way I did when I first started, when I have well and truely earnt my stripes?

I sit here now, taking the first lunch break I have taken in over 3 year, a full forty five minutes away from my desk and I realise just how much time I have given away. I don’t know why I still feel like I have something to proven. I remember feeling this way growing up too. Whenever she could, my mum made me read this poem over and over again- she had it framed above the kitchen sink. Desiderata. I remember it still. I read it over and over and whilst haven’t seen it in a while I could still recite this poem word for word. I don’t think I ever fully understood it till now though.

It is about valuing your self worth and making those around you realise you are important, your time is important and you matter. If you don’t demand respect, you will never receive it.

“I lost him”

It was around 2:30pm when you called. I had just reheated my lunch. The phone rang and your smiling face popped up on my screen.

I answered straight away, excited to hear your voice we only talk once or twice a fortnight so it’s always special when you call- your like a little ray of sunshine, always so happy and bright. As I answered my heart dropped. Hearing the sobs and gulps for air through your tears I knew exactly what had happened. “I just wanted to let you know, I just lost my dad” you cried. I went completely silent. Stunned I didn’t know what to say. “Did you hear me Bella” you asked through tear eyes. I stuttered. “Yes, yes, sorry, I just didn’t know what to say”.

We talked for a while and immediately I found myself saying all the clichés that I hate. “Everything will be okay.” “He loves you very much.” “It’s great that you got to go see him and spend time with him.” “Of course, you will miss him.” “He his not alone, there are so many people waiting for him on the other side.”

The finally those words flew out my mouth, “He had been sick for a while, it’s okay, he is at peace now”… I hated myself for saying it, how the hell is that supposed to be any comfort?? It sounded so holo to me.

Despite the fact that you are thirty years my senior we had found common ground when our fathers fell ill at the same time. Those fortnightly chats carried us through, we lent on each other as we travelled through this turbulent time. Your being the bubbelly bright spark that you are, helped me more than you know. Now here you are, needing me to comfort you and all that is spewing out of my mouth are a bunch of words that seem little comfort to me.

Whilst I really don’t know what to say or do, I’m here and I will have a handbag full of chocolate when your ready.

When I wasn’t useful anymore.

I used to work for you, well it’s not like you ever paid me – Yeah, the occasional lunch or a movie (literally only 2), but never clear renumeration for the work I was doing. It was nothing amazing mostly stocktake, packing and unpacking boxes and seeing as I was only working part-time at that point I guess, I did have the time to help you. The way you stringed me along through the four years of work, was easy for you “when we are up and running, we will actually hire you”. Meaning when your business finally took off, you would hire me full time. Well after four years I sort of gave up… moved on and began my career, not that I was waiting for you “to get big”, but I understood how this business worked and it was an easy solution to the becoming of age trope, “get a job”!

I still worked for you occasionally, but instead of being a weekly arrangement this became more a monthly thing. As I started working full-time I was naturally just less available to you. Eventually you did hire someone (only 3-6 months after I had stopped being so available to), I wasn’t mad, I wasn’t even angry. I was simply just disappointed. In a way I understood why you didn’t hire me, I had started working full time and I wasn’t going to be available when you needed me. However, some acknowledgement of what I had done, would have been nice – even just a hey thanks for helping us out back then… it wouldn’t have needed to be any grand gesture, just a. simple thanks would have been enough.

Week after week, I had been there – I had helped in extreme cold and heat, sick or no sick – I turned up and helped. I work tirelessly and without complaint. At the time it didn’t matter to me, I was helping someone from the ground up. But it did feel like a slap in the face that you didn’t even take the time to acknowledge that I did something to help you and your business get started. The biggest disappointment came later though, when I started working full time, and you stopped contacting me altogether, so seeing as I wasn’t there to be pushed and pulled to suit your every need – you stopped inviting me to all the social outings, no more movies, no more dinners….. It was amazing how after 3 short months, I went from seeing you three times a week, to seeing you maybe three times a year.

My sister never understood, we had quite a few tiffs over it early on. I was happy you had hired her, she needed to work far more than me – and she has a more fluid schedule in the sense that when you call she is usually available to help out. She is a great worker and often you take advantage of her – but knowing how delicate the arrangement was for me, I would never interfere – see I didn’t care when you were taking advantage of me… but now that you are taking advantage of her on a regular basis, I find it very hard to hold my tounge.

It’s funny, if you were a boy I was seeing, I’d have kicked you to the curb a lot earlier, but because you were a friend I let it continue without thought as I thought we were helping one another….     …..pffft, 20-20 hind sight…. I just stopped being useful.

 

 

You cooked dinner

You cooked dinner today, it was a small gesture, but at the end of a long week, it was something I really appreciated.

I came home from work with blinders on, after six days straight, (4 of them being 12 hour shifts) even though I only worked 5 hours today, I was kind of out of it. I walk through the house with my eyes half shut and stumbled to the bedroom. I sat down for about ten minutes and then remembered we had no food and we needed to do the big shop today, so you wouldn’t have been able to go to the supermarket on your own (as you can’t drive). I jumped up – the quicker we get this over with, the quicker I can get my fat pants on. (haha!)

We dawdled around the centre, we always do, we managed to do the big shop in under an hour – we actually made pretty good time. You put the groceries away when we got home and I walked towards the bedroom…

As I got closer to the bedroom I noticed, the floors had been vacuumed and mopped, there was a bunch of freshly washed linen on the bed (which meant you found the stash of dirty clothes I thrown under the table to sort out next week). The ironing was done and back in the closet. The shower had been scrubbed and the dishes were done. I may have gone to work today, but you stayed home and worked just as hard, so that when I finally did make it home I could just relax.

You got in the kitchen and cooked the best stir fry and it was even more delicious knowing all I had to do was wash the bowl, which you stole and did as well.

It may have been a small gesture, but giving me my weekend was wonderful – Thank you for making sure that tonight I get to sit down with a glass of wine, Green Wing and my knitting. You’re the best!

You frustrate me…

Most people see us as best friends, but we are more like sisters. We talk at least a dozen times a day – in fact, most days I talk more to you then my own fiancé. I wish I could figure it all out for you and save you from this turbulent journey. Whats killing me more than anything is you have these moments of clarity where you fully realise what you want from life and in my opinion discover the right way to achieve it, yet in the next breath you turn around and do the same old actions and behaviours that got you no-where, but back in the same place you are now. I watch you get hurt time and time again from romantic prospects who don’t respect you because you are not choosing people worthy of your time, instead favouring those who give you attention and treat you like an object. Although you say this is not want you want, when the choice is in front of you, this is what you choose every time. It’s infuriating to watch, it’s like the growth never happens. I’m not mad, I’m not angry, just frustrated and annoyed that I can’t pull you past this rut, past this stage. I just want you to be happy….

Like Cheese down a Chalkboard

I work long days – often 8 – 12 hours shifts, six days a week. I don’t often get down time, and honestly I don’t really feel I need it altogether that much. I enjoy being busy. However, sometimes working long hours does catch up with me, especially on a Friday. I come home from a long day at work, and you are always so good to me.

The moccasins are by the front door, kettle is on for a fresh pot of tea and you are just about to run me a bubblebath. Before heading into the bathroom to unwind from the day, I collapse on the bed. I am spent.

You come in to chat to me and we are having a discussion about something, god only knows what, I really can’t remember- we somehow got on the topic of something that really annoyed me and I turned to you and said “like cheese down a chalkboard”. I was so brain dead, I managed to mash up two sayings, “like chalk and cheese” and “like nails down a chalkboard”.

I didn’t hear it and you started laughing, I watched the joy, play and dance across your face – you laugh, a loud, jolly, belly laugh and it made me happy. When you finally gained enough air back in your body to tell me what you were laughing at – me, at my expense. I pouted and said “I was so smart all day”, and you smile and said “Yes baby, you were – which is why it’s so cute when you muddle up your words”.

I breath a sigh of relief, somehow, knowing that at the end of a long week, when I am totally spent, I am still able to make you smile, gives me a great sense of accomplishment. Watching all the happy emotions dance across your face makes me content because at last I am home, it is the weekend and we are together. Even if we are smudging “cheese down chalkboards” in my mind and even if I am muddling up all the words, it doesn’t matter, as long as I can see you smile.

Finding Strength through Persistence.

I was a pretty frustrating child. I was annoying, dramatic and I always longed to be someone else. I was constantly trying to outwit/manoeuvre the system, I longed to be a crafty, flaky kid, sitting in a jazz club with a beret on listing to some poem I didn’t understand and clicking at the end in unison with everyone else- I wanted to be in that world so badly, I’d have done anything to get there. My mother, bless her soul, spent so long trying to understand why. She would spend hours talking with me, trying to process what was going on in my mind, attempting to make me grow and push through this rut that I landed myself in, which probably lasted a good ten-fifteen years – I fought her every step of the way, I am lucky I never pushed her over the edge, although a couple of times, I am pretty sure I came close. I never fought with my dad quiet as much, not sure why, for some reason I didn’t clash with his as much, probably because we were so similar, I didn’t have to try as hard to make him understand me. But my poor mum, I gave her a hard time, like nails on a chalk board, I would driver her nuts.

Persistent, that is the best way I can describe her. No matter how much I yelled, screamed, cried, fought, made snarky inappropriate comments, she was persistent. She never gave up. When I had a problem, she always found the solution, even if I was totally unaware of it. She was in my corner fighting for me every step of the way, slowly as I grew, I started to notice it more and more.

We always had this joke, her and I, that she was my knight in shining armor, riding in on her horse coming to the rescue, sword in hard.

Then one day she started to get tired. Her health had started to deteriortate and she started to fade. Although my mum was still fighting for me, it became less and less at the front of the battle-line and more apparent that she was fighting from the shadows. No, not because she didn’t want me to see her, but because she was tired.

Around the time when I was 16, I was lying next to mum on the couch in the living room. She was exhausted. It was written all over her face – the smiles were still there, but the there was a tired hollowness behind her eyes that I could seen glaring at me, she needed a break. She had been fighting a losing battle, pushing herself to work after two years whilst being unwell, holding countless more years of undiagnosed issues before that in her hand- pushing forward without answers. Although we were all here to support her, my knight in shining amour was very much like superwoman she had to do it all herself – she took pride in all she did.

As she lay there on the couch, barely able to lift her head – all of a sudden, this giant, this warrior, this battle axe full of fierceness – suddenly looked so small, so tired, as wave upon wave of exhaustion, started crash over her. At no time did she ever look weak (even in that moment), just simply tired. I took her hand that day as I sat with her, and I said “you are not going back, please do not go back, I won’t let you”. I was looking at this warrior, who fought everyday to get out bed, struggled to get ready, every move of every limb looking like she was lifting hundreds of kilos, as the heaviness of exhaustion took over and I could not let her go back.

I held her hand that morning, as she made the call to work, to say she needed to retire – I sat with her for most of the day in fact. Pride, like I had never felt before, struck through me as she made that call – there were no tears, no shame – she simply said, “it’s time to look after me, I need to get better and I need answers.”

Then it came again, persistence. Except this time, she was not only fighting for her family, her husband, the underdog, or me – this time, she fought for herself as well. I had seen my mother fight for years, for everyone else, for those she loved and those she didn’t, in the countless children she taught, to ensure she not only educated, but she nurtured as well – I never had more pride than in that moment when I saw her fight for herself. It’s easy to fight for someone else, but it is very hard to say that you are worth fighting for.

I never gave up fighting with mum, I never gave up sparing with her – and I never made it easy. There were some days I am sure she wanted to pop me over the head and in a lot of situations we still don’t see eye to eye. But, every step I take, every decision I make, is because she fought – I will never stop attempting to make her proud. Her persistence is what gave me the strength to accomplish each and every milestone I have and will ever accomplish. Her persistence gave me a cause worth fighting for.

You flow around the kitchen

Late last night, I took my cousin for a walk along Chapel Street and we walked past a store selling Nutella Icecream with hot melted Nutella on top – there was no way I was walking past without the largest serving they had – of course in a chocolate coated cone. If your going to eat the naughty foods – bloody do it right!

I woke up this morning, with a slight headache – self inflicted, I ate way too much ice cream before bed, without enough water. You let me sleep in, maybe knowing I had a bit of a restless sleep (crazy dreams – thanks ice cream). I stumbled into the kitchen and there you were smile on your face, ready to jump out and scare me – I was too asleep to jump. I gravitated to the couch (we were in no rush this morning) to sit for a while – I stared blankly at you. I like to describe this state, as sleeping with my eyes open. You were way too awake for my liking and I was staring at you stoned faced – as you went about your morning.

FullSizeRender I watched you flow through the kitchen, flick the kettle on, whilst still gaming, cup out, tea bag in, milk on the counter, next move in the game, your laptop is never too far away. You come over to couch, noticing that I haven’t moved, get me pillows, wrap me up like a breakfast burrito in blankets “it’s only 8 degrees, stay warm” I hear you say, and vaguely the words cut through the morning brain fog, to reach me. Back to the kitchen you strut, but not before kissing me on the forehead.

You take your next move in the game and as the kettle stops, you construct for me the best cup of chai I have ever had. I keep staring at you like a creepy weirdo because in that moment I realised just how much you have made that

space your own – you kind of float through the kitchen, comfortable and at ease with no-one bothering you. In that moment I noticed there is nothing on your mind and you are at peace and I can’t help but have my breath taken away from watching you flow through your morning routine like a well oiled machine, especially knowing, it is all for me.

 

When I saw you

I remember that moment – no, not the one where I first met you, not the moment when we first spoke or the countless times I had seen you since- but, I remember that moment when I first saw you.

It makes no sense, I know – lets face it, I am not always the best at articulating myself- but I remember that moment.

It’s that moment, that moment when you sort of see your whole life before your eyes with this one person. The moment when you in an instant see the next 50 years. I had it with you.

We had been speaking for weeks – though we hadn’t seen each other in five years. Dad had dropped me off (he hated me catching the bus) and I walked to your front door. I wasn’t one to ever care how I looked but I must have changed my outfit at least 70 times that day – Suddenly I felt very light headed, there was so much pressure on me answering that door – such a build up of anticipation, I think I nearly walked back up the street about 8 times – Why the hell was the driveway so long?!

After some very heavy breathing (man your neighbour must have thought I was a creep), I made it to the front door. Eventually I must have knocked, I don’t remember doing it, but someone came to the door, so I must have. Your mum opened the door and out of nowhere all six children popped out in random locations, but just in eye-site, I was scanning the crowd – where the hell were you?! I have never felt so many eyes on me at one time, scanning me, testing me, waiting for me to move- I opened my mouth to say something eloquent… I think a hello may have come out, but I don’t recall making any sound. Your mum said hello and waved me in. Nothing was new, I knew your family, well at least the older siblings and I wasn’t worried about the younger ones, I snuck chocolates in my handbag, just in case things went pear shaped and I needed to bribe them- oh, who am I kidding – that was if I got nervous – so I could sneak into the bathroom and eat chocolate till I calmed down (so I haven’t changed much). After what must have been 30 seconds (but felt like at least 10 minutes), you popped your head over the balcony, shouted hello and said you would be down in a minute – and there you were, so calm, you had this great presence about you. My breath just caught – jeez you had grown, you were so tall – when the hell did that happen? Then it hit me, I suddenly saw you, saw all the potential you had, the fire in your eyes, your passion for facts and conversing, the excitement you had about accomplishments, big or small.

It was in that moment, that I saw, everything I ever wanted, everything I ever needed – and it was all with you.