Seven months

SEVEN MONTHS! Seven months since my last post! I would love to say I’ve been writing a book or poetry, but until October 3rd, I wasn’t a very well chicky.

As months passed and the world turned into something we didn’t recognise, many days of mine were spent looking outside focusing on two trees, one is a beautiful Blossom Tree (which naturally lost its beauty during autumn, echoing my physical state) and a giant Pittosporum (silver screen), which provided the meditation of watching its leaves and branches sway…yes a trick from the 90’s movie Phenomenon.

As the months passed, the more days I sat in front of my desktop computer looking outside (in case or when I needed Mum suddenly). Chronic headaches from a very pissed off occipital nerve became a daily thing. I had a battery pack in my tummy that supplied electrical pulses to over-stimulate the nerve, but unfortunately, the previous batteries had six to seven-year lifespans, and this one was eight!

And then 2020 happened! Yep…My neurosurgeon ordered x-rays in March (just when the Outbreak became an issue.) So more waiting to get a damn set of x-rays. I must say, the x-ray department at the hospital was great once we bit the bullet and went in. That was May/June (it could have been earlier), then we saw my neurosurgeon in July thanks to a cancellation and the fact that the battery pack had really started hurting (it should never be painful).

I should explain since January I suffered from migraines that often made me physically ill. By August I would have these migraines twice or three times within a month. As well as the headaches and migraines, I was putting up with Mr Zappy (nerve pain in my left leg and foot) as well. Headaches and Mr Zappy played off each other especially when I had vomited. I had a surgery two years ago to put a spinal stimulator in. Unaware of what it was supposed to be like, I thought it was the norm. Boy, I was wrong.

After a little setback in August, the stars aligned on Thursday, October 3rd, 2020! The surgery took almost three hours, and I’m still healing in several sites. But I’m mostly headache and most incredibly 98% Zappy free. I’m like a different woman! Sure, I get tired still and now know my limitations, but now I don’t stare outside focusing on the trees’ movements counting to ten while deep breathing…. I look outside thanking the trees getting me through days where I had sea of nausea!

And I can eat a bit of chocolate after thirteen months of cocoa abstinence!

The Tree

Swaying in the breeze
            Providing me with focus
Watching your leaves swa
Reminding me to breathe through
            Days where I couldn’t function.


We shared two seasons together
            Where we wilted to nothing
Until we began to bloom
            In the following Spring
When your pink blossoms became to life again.

            Jacqui James
            September 2020

Why I’ve started Through My Eyes

When I begun this little blog, I was 41 and just had a bad experience with a disability worker. I have had lots of experience with human interactions due to being a chatterbox (even through I’m non-verbal – I communicate and write with an eyegaze system), so I’ve had ome awesome, some not so awesome…some downright cringe-worthy experiences!

What’s different about me you might ask? To many I’m just a woman with the same feelings and emotions as you. These people see me as a person. Others immediately see my severe physical disability; how my arms tense up, how I rarely dribble due to lack of muscle tone and the big one – how I’m non-verbal! I communicate through eyegaze systems; I have one for my trusty Windows 7 computer ie Senior Eric and a portable system Baby Eric which is a Surface Pro tablet for when I’m out ‘n about. (Hopefully this year I’m upgrading to a Surface Pro 4, getting rid of Microsoft’s not so finest platform Windows 8). Anyway, you get the gist; I love to talk even though my own voice doesn’t work, thanks to my brain sending out muddled messages to my muscles.

I live at home with my beautiful Mum and our gorgeous furbabies Shadey, Frankie and my girl Roxy. My Mum is my main carer, advocate and my world. We’ve been through it all; mainstream schools, fighting Board Of Studies so they allowed me to complete an exam over days (at that stage I used a headswitch to type which was awfully slow and tiring), fought to get into uni doing a dual degree (I lasted six months due to not nice lecturers), finally I ended full-time at Tafe with Mum’s support and encouragement. Mum’s my rock, she’s always understanding. I have chronic pain issues which seem to get worse as years pass by, but Mum always understands and even with her mising out on things I never forget what she’s sacrificed (she always assures me she loves being my Mum and wouldn’t ever desert any of her four children). But then, in other areas we certainly make up for this. We love going to concerts, especially Day On The Green gigs! We have some stories about our concert adventures and holidays! I love my Mum, I have no doubt that this is the reason why “Mum” was my first word I verbalised when I was around three years-old, and still is the word I can easily say.

For showers and to get out ‘n about, I have two carers. Currently my main workers are on well-deserved holidays, so for my shower shifts we’re getting fill-in workers. This was the main reason why I’ve started this blog.

Mum always explains to a new worker (because I’m in bed still) that my disability is only physical, “mentally Jacqui’s as bright or even brighter than you and I!”. Some people “get” it, but unfortunately some don’t. Several times now I’ve had a worker who doesn’t “get” it, she talks to me in that high pitch sing-song voice, but speaks to Mum normally. There’s a way to wash my hair without “drowning” me, but this lady’s common sense doesn’t kick in. Whereas this morning I had a lovely worker (who I’ve had long ago) and she did everything with common sense and listening to me by watching my eyes. Most importantly she showed me dignity and made sure she covered my body with a towel when she was drying me. This was bliss! And because I got a little bit sunburnt last week, I pointed to my moisturiser. She put it on my body. Unfortunately other workers haven’t picked up (or just ignored) my eye cues. This morning’s carer joked about not drowning me and said how she’s told off other workers who’s done so to other clients.

I understand most people haven’t come across someone who’s severely physically disabled and non-verbal who’s not intellectual disabled, but in the year of 2017 agencies should educate their staff to at least uphold everyone’s right to dignity.

So if you have a physical disability, I encourage you to write your stories about workers (the great, awful and ugly). Maybe share this blog on your agencies’ page or e-mail them. Your voice is important!

Thanks for reading!
Jacqui

Dear Victorians:

How are you feeling?

Me, I’m very pissed especially at the Federal Government ie: the lack of vaccines And now there are variant strains! Until this lockdown, I was like it’s just the way it is (especially for people like myself) but now they have TWO vaccines but most people have to wait for more stock to come in! If you’re lucky enough to get a booking (especially for Pfizer) people have to queue up for hours, sometimes outside in the winter elements we Melbournians enjoy.

For people like myself, isolation is becoming basically has been for all the time. We can’t go to the movies or gigs in the fear of catching the virus which would KILL us! We can’t plan future gigs not knowing if we’ll be vaccinated then. We can’t plan to catch up with friends outside our homes because if one infected person passed us…GAME OVER!

AND for the aged care f’ up! How the f…. could the Federal Government decide to overturn the rule where workers weren’t able to work at various homes? Then it came out not many workers and patients hadn’t been vaccinated. It’s like COME ON!

I feel for Victorian businesses who are likely not to be able to come back from lockdown 4.0 or 5.0. They have built up their businesses over years, in some circumstances, DECADES! All their blood, sweat and tears down the drain, due to no fault of their own!

Federal and State governments have to do better! People should be able to do fun things again without living in fear for themselves and for their loved ones.

testing

The Year That Was 2020

Really… What can I say about 2020? Besides a global pandemic, it seems 2020 hasn’t gone to plan for lots of people. So let me right now say “Fuck off 2020 and don’t let the door’s slapping you on your arse stop you from leaving us!”

In a positive light, I think 2020 has forced a lot of people to revaluate their lifestyles and their work/life balance. It has for me. Until September I was pretty sick but hid it well to those people who didn’t (and still don’t) realise what was going on… Hell, I was living it and kept telling myself “it’s not THAT bad” as I spent countless days staring outside our sliding door, trying to breathe through nausea from migraines. But I got through it, and even though my life decisions have changed about working, writing and even using my portable eyegaze system to avoid bad headaches… It’s not THAT bad! It’s about adjusting and realising you’re not young anymore! 😛

I’ve noticed how peoples’ opinions on “Rona” are very different. I watched a confronting Greys Anatomy episode a couple of weeks ago which prompted Mum and me to have a conversation about my wishes. (Boy, they’re showing the effects of the pandemic worts and all) I wish people who think people are being “over-cautious” could watch that particular episode because if people understood the consequences of the vulnerable getting this virus, they just might think twice suggesting “getting back out there!” Yes, we’re lucky to live in Australia, but all it takes is ONE person to spark an outbreak. Look at NSW! I’ve only been out about six or seven times since March, once in our local small shopping centre, and that freaked me (and Mum) out because some people weren’t wearing masks or trying to be socially distant! That was in November!

I really, really, really hope 2021 is a better year for everyone! I hope you stay well and safe! And I hope you’ve had some good moments you can look back on.

Choices

2020 started with a different feeling. Maybe feeling disillusioned by the bushfires we had all around Australia which had especially around Christmas. For the first time in years, Mum and I didn’t watch the fireworks on TV (although around 9 pm we went outside and watched fireworks from nearby), but by fluke around midnight I was watching a +LIVE+ concert and 2020 was brought in by one of our all-time favourite ROCK songs Lakini’s Juice! Oh yeah, baby!

Healthwise, things have declined and we are waiting to have scans and x-rays to be done to determine what’s going on. Something is going on with my neck, plus the headaches (we’re pretty sure we know what’s causing headaches and that will be an “easy fix”). The catch is, I have to choose whether to risk going into a hospital to have these tests done. Normally I wouldn’t hesitate, but with this coronavirus, it’s like “Do I risk it? Do I risk my family, friends and workers?“  Contracting this virus is at my family, friends’ and my minds, but we’re going about life as normal. (and we’re definitely not stocking up on toilet paper and god knows what else) I think I will have the tests done because this pain I’m having is impacting every aspect of my life at the moment and it having a ripple effect on others’ lives too.

As I’m having pain every day, I’m finding having free will or choices make me feel empowered. Last month I joined two libraries so I can download eAudiobooks to listen to in bed. Reading in bed has been a dream of mine since I was a teenager so I was over-the-moon! Soon we’re mounting my old eye gaze system mounted over my bed so I will be able to control everything in my room with my eyes, so then I will be able to access Audible, Spotify, Netflix, Youtube, etc from my bed! I will be able to spontaneity choose what I desire. At the moment I set up a “Tonight” folder and number the shows or movies I feel like watching and hit a wand switch to control it (with limitations). So I can’t wait to get the eye gaze setup! I’m also getting a Bluetooth car radio for my van. This will allow me to pipe my “computer” voice through the car’s speakers so that the driver can hear me, and most excitingly I will have control over the radio station through iHeart Radio and Spotify! Booyeah! I’m very stoked about this, Mum jokingly says it’s TROUBLE! Again it’s about choice!

Silent Struggles

The other day I got in touch with one my old Tafe friends who has doing her own exhibitions of her illustrations around the state. I had intended to go to one to check her wonderful creative drawings out, but I won’t make it. So I inboxed her instead to congratulate her and told her how I’m in awe of her as she’s written children’s stories to, which has always been a dream of mine to get one or two published. This is on my “ONE DAY” list.

This gorgeous friend suggested I should submit my story to publishers on certain days where they look at unpublished authors. I thanked her, then I had to explain about my past ten years with chronic nerve pain which is under control, most days, getting off my meditations earlier this year…and now living with headaches most days and other unfolding issues we’re dealing with.

My friend soon apologised, but she didn’t know. Most people don’t know if someone is going through things if the person doesn’t announce it. There are only four people who know what’s going on with myself. My Mum, Dad, my sisters (to an extent) two workers and my good friend. I’ve been in denial a lot (which I do a lot if things are happening…

“It’s a phase” I tell myself)

So I guess people become great at hiding what’s really going on. “I’m ok thanks, just headaches…no biggie!” when deep down you know you’re not ok…you feel like shit constantly and you feel like a failure because you can’t do things like going to your nephew’s 14th birthday and writing interviews, but you don’t have the strength to do so.

I guess what I’m getting at is people are going through silent struggles all the time without the outside world not seeing it, because a lot of the time people don’t want to publise everything. So if you have an inkling that someone’s going through something, just being there (even not acknowledging your suspicions) is sometimes all what people need.

Changes

Sometimes life changes in an instant, making you really think “Life is precious”. Since June Mum and my lives have been shook upside down, but we’ve landed on our feet with Mum’s determination and my acceptance of our new situation we’ve found ourselves in. By the way, Mum is healthy. She had a fall and shattered and dislocated her elbow.   

I want to start by saying how proud of Mum I am. She was determined to get movement back into her elbow and hand. She’s back to be able to quilt, just after three months of not being able to move her elbow and most importantly being able to do fine hand motor skills. She’s now able to stick her rude finger up all the way, which is extremely important to her!

Obviously, Mum hasn’t been able to lift me and never will be able to again, so we’ve got three lovely workers coming everyday morning and night, seven days a week. It’s set times at the moment (it’s still cold at night so I don’t mind getting into bed by 8pm every night), we had a public holiday last Friday thanks to Melbourne’s obsession of AFL so we had no-one coming in, hence I had a sleep in and that night stayed up until 9:30!

The change of lifting using a ceiling hoist and sling took a few months to get my body used to – even now some days are good, other days through no fault to the workers, I injure my neck, shoulder and lower back. Due to my severe scoliosis and luque rods, I can’t physically bend in the middle, so all the pressure goes on my neck and lower back – my two weakest points. No, before you ask, I don’t do physio or any therapy as it causes more pain. Our family (apart from my brother) believes exercise is a dirty word!

Sadly, on June 1, we lost our girl Roxy. That’s what kinda begun our bad luck. On that weekend I made the tough decision; Mum and I had spoken about it since February, but Roxy kept bouncing back. But in her final week she had trouble getting into her bed and wasn’t her tap-dancing self, so on one Friday night I made that merciful decision and cried, and cried some more telling Mum and our dear friends who were staying with us that it was time, so Monday Mum, Danielle and Destiny (who was Roxy’s previous owner) surrounded Our Girl with love as she took her last breath. (yes, I’m tearing up while I write this part). We think she’s still hanging around because occasionally we hear her tap-dancing on the floor and sometimes, I feel something under the kitchen table where she sat for me to give her footpats. I’m grateful for seven years of her unconditional love and protection (she only growled when Mum was out and someone was at the door, then she started. Haha)

Looking forward, Mum and I are planning our first holiday since last June! We’re hoping to get away in March. Our good friend suggested a fully accessible apartment with a hoist and large bathroom. Yeah baby! We don’t know if we’ll fly or drive. It’s in the hands of NDIS! (my companion airfares aren’t covered, and Qantas is the only airline that can cope with my chair).

Professionally, I’m taking regular breaks from doing Gigs ‘n Interviews. I was really honoured to interview Busby Marou and Vanessa Amorosi, and I had a couple of interviews lined-up after those, but I postponed them due to headaches and other pain. Rob Thomas is still my ultimate interview but 2019 won’t be the year. I think sometimes I want to prove to myself and others I’m doing SOMETHING other than watching Netflix or listening to audiobooks. But if people think I’m lazy, that’s their opinion.

Baby Steps

We’re celebrating a huge achievement! I’m off all my drugs now! No Targin, no Lyrica, no Gabapentin… Only Endone occasionally on my really bad days!

No More Meds

It’s been a long journey, since December after my back stimulator operation. I had been on Lyrica and Gabapentin since my 20’s after having an incident causing nerve damage in my lower back and to my Occipital nerve (but this was mainly from using a headswitch for twenty-four years. Until then I was on NO drugs, not even Valium, and people were always shocked by this!

We had slowly weened myself off each drug, but the killer was the last drug Gabapentin! Because Lyrica was totally out of my system, when we stopped Gabapentin that was when the fun began. From last Wednesday morning to Friday night (When Mum had to get a doctor out) I was dry-wrenching non-stop to the point of risking of tearing something inside. Thank goodness the doctor gave me the super doper anti-nausea drug and luckily the violent dry-wrenching stopped.

I’m starting to eat more again (not very well because for some reason my mouth and swallowing has changed), but I’ve just eaten a shepherd’s pie for lunch.

Thanks to Netflix, I’ve binged Lucifer’s latest season (and now Tom Ellis is more welcome to pop in anytime…I was a massive fan before, but now… *insert dirty thoughts here*). And of course my friends and I are hanging for the GOT final on Monday!

I’m still taking one day at a time and have realised my life will never be the same to before the incident. But that’s OK. Maybe sometimes life has other plans than you strive for?

I have to thank Mum for seeing me through these 19yrs! You have always been my rock! Ps. I love you to the moon and back! X

You Can’t Get What You Want, But You Always Get What You Need

Last month was a difficult month.  A friendship broke down (I don’t know why to this day, I haven’t even told Mum what went down because I would cry but I think she’s aware because mums know everything), then Roxy our dog gave us a big scare but thankfully she’s healthy for her age! Later in the month my Lil bro, partner and their gorgeous eight month daughter visited from Queensland for a long weekend which made me appreciate what I do have in my life. Elsie, my little niece from Queensland’s has a great grip and when she was in her pram, I put my hand down so she could grab it.  She also enjoyed crawling next to me and looking up with her big blue eyes along with her eyelashes!

The gorgeous Elsie James Rogers

Last night The Stones song You Can’t Get What You Want entered my head without hearing it. I was introduced to this song in 2004 when I befriended a Melbourne singer-songwriter (well he really was the one who befriended me over chips with my parma!) who played this song at his gigs.  Then of course the bold TV series Californication used this song in one of its episodes (it may have been the season finale).  So I love this song as it provokes so many memories, mostly good.  Last night as this tune entered my mind, I thought “appreciate what you have, try not to grieve over someone who tossed our friendship away.” I know I have a loving family and friends who love me.  But it’s funny how one person can make you doubt yourself and cause you to think “Am I a crap friend?  Are my circumstances the reason why some people let go?  Could I do more?” Self-doubt crept in and for a while I found myself crying at night because I didn’t know the answers to these questions.

I’m finally getting out of this headspace and trying to move forward without this person in my life.  I’ve started interviewing again, so keep an eye out on gigsninterviews.com. AND I’m so determined to interview Rob Thomas this year seeing his third solo album Chip Tooth Smile is released next month.  Rob has right at the top of my interview wish-list since I began interviewing in 2010 and every time he has toured Australia, I have come closer to getting through to the relevant people who could make an interview possible for me! So that’s my goal for 2019!

I’m also trying to think of a way to make a little bit of cash to put towards a Queensland holiday. I enjoy working on websites and designing things (on the computer of course 😉) So if you have any ideas, please let me know. 

Thanks for reading.  I hope you all are well and safe!

Jacqui xx

2018 That Ended A Cycle

For those who have known me for the past nineteen years, I was living in a constant, vicious circle of pain and then fatigue, then the fatigue would cause pain and so on.  All this was a result of trauma to my lower back.  I won’t say how, but it was at no fault of my own.  This experience left me with emotional fear which is still with me, after all these years.

However, after nineteen years since my back surgery in October, my thirst for life has returned.  Although I have been unwell for the past few weeks, I still can think ahead (well a bit ahead).  I can attend family events at night during the warmer months, I can go to concerts after a long day without suffering badly the day afterwards.

I have dreams that I won’t be able to fulfil still (mainly due to my age…haha… and fatigue), but I’m ok with that.  I think Russell Brand or Bruce Springsteen (good old Russell… if he wasn’t married…  I’d write something like “email me Russell!”) said, if you are contributing to society you’re doing your job…  I think that’s what he or Bruce said in their Netflix’s specials.  My memory is still crap from the drugs I’ve taken for years.  By the way, the weening off these meds is fun…  SAID NOBODY EVER! So sorry Russell and Bruce (Bruce is my idol; spiritually and for his work ethic) for not remembering who said what, but I inspire to be like those types of people.

I think I will carry my fears forever and will have panic attacks whenever I get into situations that trigger them.  I have acknowledged their causes and understanding what I can do in that moment.  It’s amazing, I still have the fight or flight instinct and luckily, I can calm down myself to turn on my chair and drive to where I feel safe in spite my disability.  But I don’t have the constant reminder of my past life anymore.  (By the way, if anyone tells you to just “let it go, move on”, they never will understand how you feel.  OR, in other words, they need a punch in the face as one of my younger sisters says!)

My gorgeous nephews and nieces make living all worth it.  My aim is to make it to each 21st, and as you can see we have two little bubby girls in the family now, so I will be hanging around for another twenty-one years!

Thanks for reading my ramblings this year! I wish you and your loved ones a very Merry Christmas and a happy, healthy and safe 2019!