June 29th – Scleroderma Day

Today is World Scleroderma Day and was created to raise awareness of what it means to live with this disabling disease and recognise the bravery of those who live with this rare and incurable disease, which is often progressive in nature affecting other areas of the body.

As noted in a previous post there are many different themes to help celebrate the day around the world. 

What is Scleroderma?

Scleroderma is a chronic disease characterized by excessive deposits of collagen in the skin or other organs. The localized type of the disease, while disabling, tends not to be fatal.

However, diffuse scleroderma or systemic sclerosis, the generalized type of the disease, can be fatal as a result of heart, kidney, lung or intestinal damage.

Unfortunately in November 2018 I was initially diagnosed with this disease and in the past few years it has progressed to involve my lungs.

You can find out more about Scleroderma here, and read about an array of interesting facts about Scleroderma on the Did You Know? page.

You can even check out my own health journey here if you’d like. 

To help commemorate the day people are encouraged to wear teal, the official color for scleroderma and to share their stories on social media. Any way of raising awareness can go a long way for both those affected by this disease and those living with someone who is.

Possibly you’d like to watch the movie For Hope, a made-for-television drama film starring Dana Delany and directed by Bob Saget.

Originally released in 1996 it is based on Saget’s sister, Gay and shows the experience of a young woman fatally afflicted with the disease scleroderma.

“It was a very emotional and fulfilling project, a moment in my life that I will always treasure,” Bob Saget said in November 2021, in honor of the movie’s 25th anniversary.

“I believe that TV movie helped put scleroderma on the map for many. I will spend the rest of my life dedicated to helping our amazing Board of Directors at the incredible Scleroderma Research Foundation to work with the best medical minds in science as we raise the funds for research to one day find a cure.”

It is available to view for free here.

If you are able to, maybe you can help donate monies to one of the following:

The Scleroderma Support and Education New Zealand Trust Givealittle page which has been set up to support & educate people living with Scleroderma, empowering them to make informed decisions regarding their own health care.

The Scleroderma NZ Givealittle page has been set up to raise funds for the national support group which helps patients and their families to cope with this rare and difficult disease to manage.

Thanking you in advance 🙂

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Fine Tuning Won’t Fix your Church

Over the past couple of decades I’ve been following the myriad of ways of doing church, reading up on what is happening within Church Growth circles and Fresh Expressions from around the world.

Often times looking at how I can incorporate aspects of the methodology (principles, strategies, and models etc.) within the Corps (church) settings that I’ve been involved in and determining if this is what God wants of us in these moments. 

In some cases we, as a Corps have adopted an aspect / new approach that seems to have worked, while others not so much. One of the reasons I believe that these adjustments have worked in our ministry has been because I hold to the inherent nature of the early ‘pioneering’ Salvation Army officers and soldiers that were always at the forefront of change, adapting to the times and willing to try something new so that we could ‘win some for Christ!’

However, over the past few years or so I have noticed more and more that the main denominational western church have become less inclined to make the changes that we need to, to move in the direction of what the Spirit of God is doing in the here and now, and leading us into.

Instead we have tended to be overly cautious and risk adverse, having to fill out a myriad of paperwork and develop proposals so that we can justify to the powers that be why we think what we want to do may assist the mission. 

I was recently reading an article on the Fresh Expressions site entitled Fine Tuning Won’t Fix Your Church. “Remissioning” is Different.

As I was reading through it and assessing my ministry over the years, and the growth that Annette & I have seen in some of our appointments which was both spiritually and numerically, I identified with a few things that we all can possibly take on board as we return to a semblance of normalcy within the church.

The first is that we can no longer afford to make small adjustments ‘fine-tuning’ – sometimes we need to take a leap of faith and make much larger ones.

“When churches or church leaders realize something needs to change, they often turn to ‘fine-tuning.’ Fine-tuning means making small but meaningful adjustments to an established system. In the church setting, this could be anything from changing the congregation’s name, the church building’s carpet, or adding a new church service with different music.

There is value to fine-tuning, especially if you are generally happy with how things are going. But for many churches, fine-tuning will never be enough.”

The second is that out of crises, where everything appears to be in chaos, God creates something new and brings about order.

Many church growth commentators acknowledge that the Covid-19 pandemic has been a major crisis that we have all had to face right around the globe, and the church throughout the world has never seen anything as disruptive to the way that we do church than having to adapt / change / pivot the way that we operate, and navigate the way forward.

Our world has drastically shifted and in many ways we will never fully go back to the way we were before. 

“For churches to thrive in a world so different from how they were built, they need to make a more radical shift than fine-tuning. Churches and their leaders need to recapture a theology of God’s mission, an expansive and flexible model for local congregations, and develop skills, strategies and spiritual capacity for living and working as missionaries in this new context.“

Fresh Expressions call this radical shift ‘remissioning’.

Others refer to it as revitalisation, refocusing, re-engineering, re-strategising, reorganising, re-focusing on the key aspect of mission, or mobilising.

Whatever you call it, in all of these approaches churches are seeking to see a movement of the Holy Spirit that manifests in a powerful supernatural way. 

In essence we are crying out for revival and doing what we can to help enable it.

In the settings that Annette & I saw growth we went through a process of questioning everything that we as a Corps were doing, determining if it was something that we wanted to carry on doing, and re-confirming the ‘why’ we exist.

At times this was not pleasant as we had to close down ministries that were no longer doing what they were initially intended to do and people got quite upset. However, in those instances where we were able to communicate the rationale why we were doing what was necessary, it was taken on board positively.

But we were determined and chose to invest in what it was that God was leading us towards and we saw growth – numerically and spiritually. 

As many churches (Corps and centres) return to in-person gatherings and aspects of church go back to ‘business as usual‘, I pray that we would take our time and properly assess what it is that God is doing in these days. 

There are a lot of difficulties facing our world right now. Churches and church leaders have their own difficulties as well. 

But there are also plenty of possibilities and opportunities to do things differently.

In many regards what we were doing prior to the Covid pandemic was not necessarily working for us.

Many church leaders were seeing their churches (Corps and centres) dwindling, finances were not keeping up with the increasing costs of doing church, ministries were not having the effect that they were intended to make and church attendance was low.  

I’ve recently been privileged to be conversing with key church leaders around the Wellington region and they all agree that it feels as if God is doing some pruning in the church. Many are facing challenges that they have never had to face, and in those moments they are finding that they have to draw closer to God like they never have before.

And I believe, as do many others, that God is doing something new thing right now, and many congregations are already experiencing renewals as they are “remissioned” or mobilised.

Maybe that is because for some time the church has been relying on what ‘we’ bring to the table – But it could be argued that we have been doing service for services sake and we haven’t truly allowed God to do what only he can do with them and this goes for many ministries also. Who are they really for?

The things is, often those that we minister too in God’s name don’t even know that we are doing it for Him, let alone so that we can make Him known. Instead ‘we’ (the church or organisation) get the recognition, accolades and praise, rather than the One we are doing it for. 

So, let’s start focussing more on ‘being’ church in and for Him, rather than ‘doing’ aspects of church for _ _ _ _ _ (you fill in the blanks).

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Physical Version of Pink Floyd’s new song to be released

Earlier this year I wrote that as a long time fan of Pink Floyd I was just a tad excited that they had released a new song after almost 30 years.

A few days ago Pink Floyd advised via their website that a physical version of their song “Hey, Hey, Rise Up!” is to be released in the coming month.

The single, which was initially released digitally in April in support of the people of Ukraine and was Number 1 in 27 countries, will be available on 7″ and CD single. Both formats will also feature a newly reworked version of A Great Day For Freedom taken from the band’s 1994 album, The Division Bell. I’ve already preordered my copies 🙂

The lead track sees David Gilmour and Nick Mason joined by long time Pink Floyd bass player Guy Pratt and Nitin Sawhney on keyboards and featuring vocals by Andriy Khlyvnyuk of Ukrainian band Boombox. When it was first recorded at the end of March, Andriy, who left his band’s US tour to return home and fight for his country, was in a hospital bed in Kyiv recovering from a shrapnel injury.

The artwork for the track The Sunflower Look features a painting of the national flower of Ukraine with a twist by the Cuban artist Yosan Leon.

The cover is a direct reference to the woman who was seen around the world giving sunflower seeds to Russian soldiers and telling them to carry them in their pockets, so that when they die sunflowers will grow.

Proceeds for the physical release and the ongoing digital proceeds will go to the Ukrainian Humanitarian Relief. Your donation will help humanitarian NGOs and UN agencies in the Ukraine to assist the most vulnerable communities and people, and to provide them with urgently needed food, water, shelter and other basic support. Through this rapid and flexible response mechanism your gift today can be truly life-saving.

You can watch the song below or stream/download a copy at http://pinkfloyd.lnk.to/HeyHeyRiseUp.

 

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Grace: A gift that we don’t deserve

As I’ve shared previously, over the past month or so as part of my daily devotions in the YouVersion Bible App I’ve been journeying through the Book of Psalms, drawing inspiration and encouragement for my own life from the writings authors.

Although I am still not even ⅔rds of the way through them, I’ve come to appreciate that the Psalms are in essence an intricately designed collection of poetry that recounts Israel’s history and God’s covenant promises, and poetically retells the entire biblical story.

A few weeks ago I was reading Psalm 44 in the Passion translation and was struck by the way that they have framed and then formatted the psalm:

frame – Wake Up, Lord, We’re in Trouble.
format – The Past, The Present, The Future.

This Psalm touches on the importance of God’s grace and His mercy and although these two aspects of His persona are often used interchangeably throughout the Bible, they differ in many ways. They are intrinsically linked in essence much like two sides of the same coin. Grace being the gift that we don’t deserve, while mercy is not getting the punishment we deserve.

Sounds a little confusing right! But the thing is as we read in Romans 3:23-24a;

“everyone has sinned; we all fall short of God’s glorious standard. Yet God, in his grace, freely makes us right in his sight.”

(New Living Translation)

We will all be judged on how we live this life that we are gifted with, one way or another (in spite of our religious beliefs). And none of us regardless what we have done or what we are going to do will ever measure up to His standard – We will have to give an account for our past, our present and those things that we do in the future.

Yet through it all God through His grace will make us right in His sight 🙂

You see, grace is the gift we don’t deserve and the one which we couldn’t earn by your own merit. It’s like a lotion that smooths cracked skin, or a deep rain after a long dry season. It’s the comfort of a warm beverage, a best friend when you’re lonely, or a soul healing hug when you feel sad.

Grace fills in all the rough parts of our lives and makes us whole and God sees you through a lens of grace. When you see yourself as less, God sees you as more. When you don’t feel like you are enough, God wraps you in grace and sees you as worthy.

Ephesians 4:7 says that “to each one of us grace has been given as Christ apportioned it.”
(New International Version)

He loved you and I so much that Jesus was willing to cover our sins in the grace of His blood and gave us each a seat at His table. When we struggle with identity, we can be confident that God’s grace will catch us.

We are all recipients of God’s grace despite having sinned over and over again, He has shown us kindness and compassion. He even sent his only son so all of us can be saved – an act of grace that we do not deserve.

You see, there is nothing you can do to make God love you more and there is nothing you can do to make Him love you less. This undeserved gift, God’s grace, is simply yours if you choose to believe in His Son who loves you!

He doesn’t see you and I through the lens of our sin, He sees us through the lens of His grace, and when we accept His grace, we begin to grow in His love.

“So let us come boldly to the very throne of God and stay there to receive his mercy and to find grace to help us in our times of need.”

Hebrews 4:16 (The Living Bible)

As I’ve spent some time thinking through my own past, present and future over the past few weeks – I’ve recognised some things that have happened in my life in the past that I’m ashamed of, and other things that I am extremely grateful for.

There are even some things that have happened where all I can put them down to is that God miraculously intervened, even if and when I didn’t want to know or acknowledge His leading in my life.

There are times in my present that even though I have a reasonably strong faith (or so I’d like to believe) I cast it aside from time to time and try to work things out on my own and in my own way, rather than seeking His love and guidance, His mercy and grace.

And no doubt unfortunately there will be times in the future where that will remain to be the case, because I am merely human and tend to fall back into what is the known rather than relying on the unknown.

I pray though that those times will become less and less as I learn to rely on Him and trust in His mercy and grace.

So, what about you? What would trusting in His grace and mercy look like in your life? Where do you notice God’s grace in action? Have you noticed His mercy? When you fully consider the magnitude of this gift, how do you respond?

Maybe you’d like to pray the following prayer: “God of grace, thank You that when I was lost, You found me and when I was ashamed You forgave me, nailing the accusations against me to the cross.” Referencing Colossians 2:13-14
(New International Version)

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When the Burden is Too Much

One of the biggest challenges with the rare disease Scleroderma is a lack of energy, also called, fatigue.

It can be likened to dragging a ball and chain around with you night and day that you simply can’t break free from.

When the burden is too much – what gives?

Fatigue is something that I’m becoming more and more familiar with especially over the past few months or so. Initially I had put it down to my body getting used to medications that I’ve been on, as previously I’d get a bout of fatigue every now and again. Then in recent months I’d put it down to the new course of treatment that I’ve been having.

However, I’m learning through reading about and listening to others that suffer from this rare disease through the variety of support groups, that often whatever energy people can have in their body at the beginning of any given day could be gone in a moment. And the ultimate challenge with fatigue is that you simply don’t expect it!

One day you can be fine and do a myriad of tasks, the next day it takes everything that you have just to get out of bed.

Scleroderma patients that experience fatigue often find this symptom extremely frustrating because they were used to living an active life and now need to adjust to a new level of activity, which can come and go.

Sharon Esposito described it like this;

“FATIGUE…..those who don’t suffer from a chronic illness may not understand exactly what it means.

It’s not just feeling tired, it can’t be alleviated by a nap. It’s much deeper than that.

Fatigue from Scleroderma is a total body shut down. It’s as if a vacuum has sucked out any energy or strength your body has and you are left with nothing.

Even simple tasks such as showering, getting dressed, or sometimes even getting out of bed can feel like climbing Mt Everest. It’s just one of the MANY symptoms that I and others with Scleroderma deal with everyday.“

The thing is, fatigue is a complex problem often experienced by people with chronic illnesses such as Scleroderma and can contribute towards brain fog.

Which is something that I wrote about here.

Some people have medical reasons why they have fatigue, like thyroid imbalances or anemia. It is usually caused by an interaction between physical and emotional causes. 

Unfortunately though, there are no medicines to improve general fatigue in scleroderma and the medical community does not entirely understand it. Still, there are lots of things that can contribute to fatigue, such as:

• Pain – Chronic pain, acute pain, and worry about pain can all contribute to the experience of fatigue. Here, fatigue can be caused both by chemical changes in the body and by the stress and anxiety that often accompanies pain.
• Sleep problems – Not enough sleep, disrupted sleep, or sleep that is not of high quality all contribute directly to daytime fatigue.
• Doing too much – Adjustment to a new illness often means having to adjust what your ideas are about a reasonable amount of activity. Overdoing things leads to increased fatigue.
• Limited capacity to process oxygen – Scleroderma can affect the lungs in several ways, which can result in shortness of breath and difficulty breathing.
• Depression – Mild situational depression is a normal response to the limitations of chronic illness. Often, people experiencing depression have a loss of energy and enthusiasm. If you believe you are depressed, you should tell your doctor or other health professional.

Recently I have been accepted as one of only a few international participants into the University of Michigan RENEW Scleroderma Fatigue Study.

The focus of this 12-week RENEW program is to provide people with scleroderma the resources, tools, and knowledge to self-manage fatigue.

It can also help address pain, physical changes, and emotional challenges, all of which may contribute to fatigue.

The RENEW Program involves health coaching from trained peer mentors and allows users of the Web and App based platforms to read information about scleroderma and to set and track weekly goals and complete activities relevant to these goals.

In due course I will be sharing some of my experiences with the programme 🙂

Over the past few weeks or so I’ve been listening on YouTube and Spotify to a lot of progressive rock bands; Yes, Jethro Tull, Rush, Genesis, Uriah Heep, Marillion, Hawkwind, Supertramp, among others.

A song that has resonated with me of late is one that features on the Japanese version of Asia’s Omega album, Drop A Stone (video below).

The lyrics of the chorus are as follows;

When the burden is too much to take
When you feel that your back is to break
When it all gets too much, and your feelings are such that you ache
Let it go

Although, sometimes with fatigue it is hard to let it go per say, and those affected by it can probably relate to the quote from the picture above; 

“Just because you aren’t making progress as fast as you think you should does not mean that you aren’t making progress. Keep going.“

We do need to do what we can, as small as that may be, to combat the effects of fatigue and let go of the psychological tension that could cause us to start sinking into a deeper and darker level of depression.

We need to try to remain as upbeat and positive as we can and accept that even if we can only manage to clean a corner of the room, or vacuum one room of the house that is better than nothing at all 🙂

 

 

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Matariki – New Public Holiday

Today marks the first public holiday to recognise Te Ao Māori – Matariki and although it will not always fall on the same date each year (just like the Easter holidays) it will always fall on a Friday.

The rising of the star cluster which is known around the world by many names, but most commonly Pleiades, signals in the Māori New Year and is made up of several hundred stars.

But only a handful are visible to the naked eye and each star in the cluster has special significance. According to Māori astronomer Dr Rangi Mātāmua;

First up, there’s Pōhutukawa. Many Māori believe that this is the star which guides the dead across the night sky. When the cluster returns to the horizon just before the sunrises, the dead of the year make their final journey into the sky. They then become stars in the sky for eternity.

Then as far as geneology goes, Mātāmua says Tupuānuku is next. It means to grow in the ground, and is connected to all of the kai/produce which we get from the ground.

Tupuārangi is the star that’s connected to the forest – to bird life, and the harvesting of food products grown in trees or above the ground such as fruit.

Waitī is fresh water. It’s the star that is linked to fresh water and all the creatures that live in the rivers, the streams and the lakes – particularly eels. Waitā is salt water and is linked to the moana, and the many kinds of food that can be gathered from the sea.

The next star in the cluster is Waipuna-ā-rangi, which means water from the sky. It will determine whether there will be a drought, or an abundance of rain for that season.

Ururangi is linked to the winds. Māori have hundreds of names for different winds.

The youngest star in the cluster is Hiwa-i-te-rangi. This is the star where we can send our wishes, hopes and dreams for the year.

Mātāmua says each of these stars, are the children of the central and biggest star of them all – Matariki. She is the mother of the cluster.

He says that when the stars rise as one group, Matariki hunga nui, that’s when everyone should gather together and unite as one.

“All of them feed into the wellbeing of people and that’s what Matariki represents,” Mātāmua says.

“When Matariki is bright, it’s a sign of peace and a sign of wellbeing for people on earth.” (Source: 1News)

The New Zealand Government has committed to ensuring mātauranga Maori is at the heart of celebrations around the country. It will be a time for:

Remembrance – honouring those we have lost since the last rising of Matariki

Celebrating the present – gathering together to give thanks for what we have

Looking to the future – looking forward to the promise of a new year.

Te Wānanga o Aotearoa who provide holistic education opportunities of the highest quality for Māori, peoples of Aotearoa and the world have provided a range of resources that you may want to check out including this awesome colouring and activity book which is available here.

You can also check out what events are happening when and where around the country for the inaugural Matariki public holiday here.

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