After 3 relaxing nights, Brie and I parted ways and I was headed on unchartered territory to Allora and Warwick.

I checked into my cottage with the fireplace blazing to welcome my arrival and I sat on the couch for the next 4 hours or so preparing for the 11 am meeting. They had a record player and I'd brought with me the 1 record I own to listen to. I don't own a record player yet, but have a desire to one day buy a vintage record player. I set the music up and got on with the revision of my various Drs letters and Functional Assessment done by my OT, stripping out in a list form everything we'd asked for to try to gauge during the meeting if they'd been approved and what they were worth.

I read over the NDIS booklets on what to expect in this meeting and reflected on what my Complaints Lady Danielle had said.... "Loren, given your rough run, I want to manage your expectations, whilst this is your approval meeting outlining what you will be able to access you won't get the final figures or access to anything for 1-2 weeks after it. And you will likely need to resubmit documents outlining your deterioration since the March submission to help with changes. BUT, I am file-noting it for your NDIS lady Emma for Monday that due to our arduous process, things have changed".

I jotted down the key things I wanted front of mind or to ensure we heard from Emma:
- Approximately the value of the items I can't live without to help me know if the result was ok.
- We wanted 'flexible' spending not 'stated' - which would mean I can reallocate the budget as needed.
- Back in the day we had applied for Self Managed but given my cognitive decline we now wanted Plan Managed which is funded by them.
- We wanted a Support Coordinator to help me coordinate the complexities of everything, but I'd been warned by many this is hard to get.
- I needed to get through to Emma that since the March report the gurus have said SPS has impacted my brain function and my right and left sides aren't communicating well, and I'd failed all their physical tests. This then means I need a neuro physio and feldenkrais physio as well. Most importantly my specialists have said the key to me stabilising is physio and rehab. Plus, we had also now found an elbow bend in the trachea and the 2cm down to 1cm diameter issue which I'll learn more about on Monday.
- These days I need more help with transport, it's not always safe for me to drive and all my gurus are in Brisbane and their specialities don't exist on the Coast, but I can't move back to Brisbane as it sets off my trachea/voicebox spasms. Plus the sea air has been excellent for my respiratory and I only made the move as it was recommended by my CF specialist.
- I do now have an apartment again, am no longer homeless-deluxe but have also relied on staying with others during this period and am ashamed I've not been able to mop since I've moved in.

By the time I met Janelle, she had also written a checklist of what she would be advocating for as a bare minimum.

From the outset we could tell Emma had read over all the reports, and my prior Local Area Coordinator NDIS lady Allison had done an excellent job putting my story through their system (from our 2.5 hour arduous day reliving my shit major life events and daily living inability). Allison is the one who got me fast-tracked as high-risk. It was also becoming obvious that Emma had also seen the complaints lady notes on my deteriorating circumstances.

As we went through my crappy elements of life again she said it is obvious you will need this, and that, and this, and that..... effectively everything we had asked for line by line in our report. But in some sections, she added things to allow for really bad days or further deterioration this year. Wow. Tick. [Janelle did a fist pump, and ticked a few things off her list].

She then said given the changes in your health, how long has it been since you've had a swallow study done and do you find yourself choking much? I said it's been so long I can't recall as I've had to stop self-funding speechies and dieticians and yes, I often choke on swallowing my medication or even on sipping water.

She then said, well with this in mind and the degeneration I see in the SPS research we want to fund that test and we want to add to your plan a dietician who can work with the speechy who can work with someone who will be preparing your meals. It's clear with your allergies, and elbow bend issues, and SPS spasms we need to keep a close eye on your diet for 2 reasons.
1) to help with the best eating regime to support and not trigger all of your conditions; and
2) ensure it is aligned to where your SPS and elbow bend dysfunction may lead to. e.g. softer foods.
[Janelle did a fist pump and added this to her list to tick off!]

Emma then went on to say that given how quickly things change for you we want to make sure we do annual reviews, not leave you stuck on 2 or 3 yearly. [Janelle did another fist pump! I had no idea how important this was at the time]. And I've decided it is going to be very important that your funding is 'fully flexible' so you can swing the funding to where it is needed based on how you are going with each of your issues which change daily. [Janelle did another fist pump!].

Emma then said: how are you feeling about Self Managed?
I said: we've now come to the reality I'm not capable and Plan Managed would be ideal.
Emma said: that was a good answer!

Emma then said: Loren, it is super clear to me how important having a Support Coordinator would be with how complex things are for you managing soooo many moving and unexpected or unplanned parts and I'm adding that into your plan. [By this point I think my head was on the desk in disbelief and I could sense Janelle vigorously fistpumping away].

Emma asked if I was still there, and Janelle had to respond that I was becoming very overwhelmed but in a good way. By now my body was seizing up from good overwhelm so I had to get up and start moving it. Janelle asked if we needed to take a time out and Emma was obliging.

I said: Nope we've come this far, let's press on, I'm just lost for words and my body is spasming and seizing from the good overwhelm. Janelle, you might need to manage the rest from here. The two of them went on for a bit more, I'll never know what about as I was in too much shock.

Next minute I hear Emma say:
I think I've pretty much got everything I need to finalise it anyhow and did either of us have anything else to add? Janelle went over her checklist and there was one item left. I couldn't think what could be left!!

Janelle said: As you know Emma, Loren's family is a long way from her, in Cairns and on the Murray River. Travel is important to Loren, which she's barely done for 5 years, and so is her family. But each trip she takes she limits to around 4 days as it's too taxing on her body without having her usual quiet environment and supports and when she returns she has a setback lasting weeks. I'm wondering if you could consider Short Term Respite and Accom with the appropriate supports for her in the plan. So that she can do this but not suffer at the same time.
Emma said: This seemed reasonable as it's a basic human right to see your family and see them safely.

By now I was back with my head on the desk.

Emma said: I'm going to go away now and spend the day on this. I'm on leave tomorrow (I flung up from the desk and Janelle and I both looked at each other with horror), so if you don't hear back from me today you will Monday (Janelle and I both sighed relief it wasn't a long break!).
Emma asked if there were any questions and if when she did call back could we have a Plan Manager and Support Coordinator's details ready.

I somehow found my voice that had been missing for the last 20 or so minutes.
I said: Emma, can you help me understand what this means? I was informed it takes 1-2 weeks for the final budget/plan.
Emma said: Loren, I think you've been through enough, and are suffering when you shouldn't be, we are not following that process, I'm making you my #1 priority and I'd like to see it finished today and me calling you back today with it fully signed off and live. The only thing that will get in my way is finding the right senior manager to approve this plan and me making sure I cover everything you need....but well enough, not cutting you short. If I can't do that, then it would be Monday.

I then said: I'm lost for words and how grateful I was. Emma then said she'd be away now to get on with it.

I then said: Emma, before you go, can I ask one last thing?
Would you mind ringing me either way this afternoon, you know, to let me know if it's carrying over to Monday? The silence during the entire NDIS process is torturing and not knowing what's happening is not good for my mind. Plus, I won't be with Janelle on Monday but I am all day today. So then I can make backup plans for Monday.

Emma said: Loren, that sounds really fair. I promise to call you either way. And if I need to inform you it's Monday, if you like I can call Janelle and we can manage it for you, or I can dial you in too.

No worries. We all hung up.

I laid back in the sofa like chair I was in, slunk down, to an almost sliding-off position.
I was speechless, motionless, in a daze.
Janelle was so damn happy celebrating it gave me the visual signal we'd had a significantly good meeting. At this exact point, I knew I'd made the right decision to come all the way to freezing Warwick as Janelle's visual cues told me things were on the right path and I did need someone skilled to manage it for me. I could not have handled that alone.

I apologised to Janelle I was so quiet when I should be jumping for joy like she was. I was just lost for words and in shock and overwhelmed. This had been a 2.5 year battle (with a 8+ year battle fighting the notion of accepting I needed to apply for supports generally). It was so surreal it seemed to then be wrapping up so quickly and more than adequately. All I knew at this moment was that if Janelle was stoked, I was stoked given I'm a rookie at this!

Fortunately, we had a Plan Manager already decided and I had a couple of Support Coordinators in mind.

We decided I'd go get lunch, and ring up MS Qld (they have a support coordinator team) as they were most likely used to neurological patients like me (which made sense because when I go to the Mater I go to the MS clinic... given the SPS clinic would only have me in it hahaha) and see if they would be interested in me joining their panel.

Then I'd come back and have physio with a member of Janelle's team and then hang around and wait for "the call".

Just as I was pulling on my pants from physio (around 3pm) a No Caller ID call came. My eyeballs popped out of my head and I thought this was either Emma or one of my specialists.

It was Emma. Being caught off guard I said:
Emma, can you wait whilst I get my pants back on and I'll grab Janelle?
Then I realised what I said, and added: I've just had physio!! haha
Emma laughed and thanked me for the context.

I got Janelle and back on speaker phone we go. I'm now back by the side of my chair, not in my chair, standing, hovering. I could not sit. Waiting to hear the verdict.

Emma said: I've been able finalise your Plan Loren and had the right approval. Are you right to go through it?

I had no words. Janelle piped in and said: We'd love to go through it.
I said: oh, yes, sorry, I'm just lost for words this is really happening right now and not Monday.

I flopped into the chair and opened my laptop back up to take notes.

Next minute Emma was blasting off in bullet point format all the allocated hours and $ for each line item of support we'd requested. Each point seemed same same as requested or better.
It was being delivered so quickly that I couldn't keep up with my typing on my laptop whilst keeping up with comprehending.

I looked over and Janelle was capturing it all and smiling and nodding. I closed my laptop lid and decided to just listen and comprehend as best I could. I felt myself just zoning out and in....missing items and then soaking up as much as I could....hearing things like: "then we will support you with this, and this, and this, and that, and we've decided you need this and that as well".

And yes, I got approval for 2 weeks Short Term Respite accom and care to use as I need.
And yes all line items were fully flexible.

I think I spent over 50% of this call with my head on the desk and eyes closed. It was the surrealist moment of my life.
Was it really happening, and today, right now?
Was I really getting everything + more than we'd asked for in support?
Did I deserve this much?
Is this really appropriate?
How is this happening?
Maybe I've had a bad health turn and this is a hallucination?
Did I hear that bit right?
What does this mean for my life now? I hadn't dared think about that.
What was that about getting my bank details to give me a travel allowance for days my support worker can't take me places.... ?

Emma: Loren, are you there I need your bank details.
Janelle: Loren, can I help you get them?
Loren: Sorry, I'm so overwhelmed with relief and gratitude I can't keep up. Janelle - can you read these out to Emma as I'm dyslexic?

Emma then said: right, well that's all effective immediately. I'll have the written version of this plan emailed over shortly and I'll engage your Plan Manager and Support Coordinator straight away so you can get started by Monday.

Janelle: thank you Emma we really appreciate this, what the NDIS has done will be life-changing for Loren.

Loren: coming back into the zone... so this is it? What happens with you now Emma? Do I work with you again?
Emma: This is it Loren. It's official and I truly hope this is enough to help regain some quality of life and stop the degeneration of all of your conditions. And if it's not Janelle can help you work on a change of circumstances.
Loren: I have no idea how to say how appreciative I am. Thank you Emma. You've just changed my life in the blink of an eye and given me a chance of a worthwhile existence.

We all hang up.

Janelle is basically doing the happy dance in her chair and I'm staring into space again.
But my eyes catch a sign that has been on her wall ALL day and I'd not noticed until this exact moment.

It said:

faith
does not make
things easy, it
makes things
possible

And with a tear in my eye I turned and looked at Janelle and I said, thanks to you and all of my crew of supporters, I feel like living a quality life can be possible again. Like really living it. In time, with all this support, I can dare to think and even dream about what's possible again. Maybe I can break out of hour-by-hour survival mode and into living mode.

I thanked her countless times and we agreed I should head home for an hour's break and we'd meet for dinner at 6 to celebrate.

I made a few celebratory calls, and sent out a few texts to my key contributors (e.g. Dr Reece, Dr Heiner). On drive time to dinner, I called Jen and Mick for a quick celebratory download, but had to bump them as Dr Heiner was calling and it would either be about my complex lung function tests or my text.

Dr Heiner said:
Loren, I'm calling to say congratulations and to let you know this is one of the happiest most relieving moments of my career. But I'm also calling as I know how you will be feeling and I want to put a stop to it.
I know right now you are worrying about deserving this. You've been worrying about this for over 10 years since I've been asking you to get the support that you deserve and need in place to stop the deterioration.
I want you to go to sleep tonight knowing you deserve this. You and SOS have paid your taxes, a lot of taxes. You have helped grow so many businesses from one-man bands to large businesses and with that, they've paid even more taxes. You've given and given to others, relentlessly, even when I've had you strapped to the hospital bed.
You are self-funded. You need to believe that. It is true.
You've paid your way already to have these supports.
You deserve to live out your remaining days with these supports, and as you said in your text to me we do have a blank canvas for you now. In a few months, you'll have some energy back and when that day comes we'll get together and you can help me with some things in my business. Full charge, no mates rates! And then you'll be paying more taxes and funding what you deserve (he said it with a chuckle). He then said, anyhow, go celebrate and I'll see you Monday in the clinic.

Wow. What a man. He could have waited until Monday to talk to me in our booked appointment. But he selflessly called after hours. Both he and Dr Reece (who sent many texts back!) know me so damn well. They've fought for me when I've not fought for myself. They've had faith when I haven't. They've believed in what I deserve when I haven't. They care enough to know how uncomfortable I would be feeling about such a significant result and to call and message me to help me believe I do deserve this. They have literally saved my life countless times, and they've kept me believing in the hope of a better life no matter what new obstacle we get thrown. They just keep lifting me up as I fall down....over and over again. Extraordinary people.

And here we are - with the blank canvas for Loren v47. Things are still sinking in!!
What v47 looks like is still unknown.... but paint and a brush are almost on the ready. I met my Plan Managers whilst in Warwick and I will meet my new MS Qld Support Coordinator on Wednesday - she visits me at home. From there I hope to understand more about where my life is headed.

But at least for now, I can daydream about some positive elements that were not possible over the last 15 or so years that I've been gradually deteriorating and struggling more each day.

Maybe I will be able to buy myself that vintage record player by the end of the year to play my one record I bought as the inspo to drive the dream of one day buying the player :-)

What I know for sure is that I have Hope back. Without hope, you have nothing.
Having Hope keeps you going, one foot in front of the other believing in positive possibilities.
From now on, per the sign below, I'll add Faith to Hope. Together an unbeatable combo.