I am truly humbled by this moment.

From excitement to a touch of anxiety, it still feels surreal holding Hope Undivided in my hands. This journey began more than forty years ago, but over the last four, it has pushed every boundary I thought was set in stone. It broke me — only to rebuild me, moment by moment.

This book has been in the making for four years… yet, in many ways, the journey is only beginning.

To everyone who believed in me, motivated me, and stood by me while I poured my pain and soul into these pages — thank you.

To Teresa, who carried me through sleepless nights filled with tears, anger, and relentless writing. To Malan and Liam, who had to endure a dad not always present, even as I fought my way back to them. And to every single person who played a part in this journey — in whatever way — thank you from the bottom of my heart.

This book is for you.
For everyone searching for light in the middle of their storm.
For everyone who still dares to believe in Hope.

(📖 Now available on Amazon KDP (internationally)
South African release coming soon — details below in first comment👇

📖 Hope Undivided is now available on KDP Amazon (internationally), and will soon be available through:

·        IngramSpark (internationally)

·        Exclusive Books (National)

·        Bargain Books (National)

·        Wordsworth Books (Western Cape & KZN)

·        Van Schaik Bookstores (National)

·        Protea Bookshop (National)

·        Airport Retail Concessions (National)

You can also pre-order directly from me, and by the end of the year, it will be available on Takealot.

CRPS my Journey: Being a Warrior: Living with CRPS, Chronic Illness, Depression and Unstoppable Hope

It’s been a while since I posted on my blog, as I’ve spent the past year focusing more on getting my book finished. But more on that later.

Lately, I’ve been thinking a lot about what it actually means to be a warrior. When you live with a chronic illness, calling yourself a warrior—rather than a patient or sufferer—becomes a choice. Some people think it’s just denial or a way to use positive thinking to feel better.

The reality is that, while positive thinking plays a part—even positive reinforcement—calling yourself a warrior when living with an incurable disease means much more. Let’s break it down:

Being a Warrior – Positive Thinking

The dictionary describes positive thinking as: "a mindset where one focuses on the positive aspects of situations."

Now, living with an incurable chronic illness like the Suicide Disease (CRPS), you might ask: what’s positive about that?

Being a warrior means finding moments you can define as positive within your circumstances. It’s about looking for glimpses of hope in the chaos. That might mean a day when the pain is less, or a good chat with someone where you don’t feel judged or disbelieved. It could mean spending time with my kids on the weekend instead of working.

It might even be holding onto the hope that a cure may be found someday—preferably in our lifetime. And even if not in ours, that a cure is still found, so others may be spared the brutality of this disease.

Positive thinking isn’t denial. It’s not pretending that there’s nothing wrong with my hand or my body, or that it’s all in my head. That’s denial. And we already have enough people telling us that—without adding to it ourselves by believing their uninformed opinions.

I’ve always stood by the importance of pushing your limits responsibly—listening to your body. Denying I have a cruel, life-altering disease is foolish. Stopping treatment because I want to “think positive” and “think myself healthy” (I’m not talking about faith—that’s another discussion) is not only irresponsible but also undoes progress and creates more complications.

Positive thinking is about consciously choosing to focus on good things, reframing negative thoughts, and visualising desired outcomes. Instead of dwelling on mistakes, you learn from them and look for ways to improve.

So, I try not to dwell on the bad days. I take each day as it comes and learn from experience. If I know Chucky (my CRPS hand) will flare up after certain activities, I try to reduce the aftershock by using coping strategies and making time to rest and recover. I also ask myself: Is this task really necessary? Can I delegate it?

Positive thinking is about finding ways to move forward while protecting Chucky and reducing pain—without compromising the quality of my work, or my life. It’s about setting goals and figuring out how to achieve them while navigating my limitations.

It’s a mindset that improves mood, reduces stress, and helps sustain well-being.

Being a Warrior – Positive Reinforcement

“Positive reinforcement is a technique used in behavioural psychology to increase the likelihood of a desired behaviour by adding a desirable stimulus.”

It means identifying a behaviour you want to encourage and then offering a positive response—like praise, a reward, or a privilege—when it occurs. It’s a simple concept, but its power lies in consistency and timing.

For example:

• A parent might praise a child for helping with chores, which increases the chances they’ll help again.

But what does positive reinforcement look like when you’re living with a chronic, invisible illness like CRPS—when bad days outnumber the good?

🟠 Sometimes, it’s allowing yourself a rest day after pushing through pain—no matter how small the task achieved.

🟠 Sometimes, it’s placing a heat pack on a burning hand to ease the fire that is your daily reality.

It might not sound like much to others, but when you live with constant pain and bone-deep exhaustion, a warm beanbag or a guilt-free nap can feel like heaven. It’s not luxury—it’s survival, wrapped in compassion.

And sometimes, that’s all it takes to rise again tomorrow.

Being a Warrior – Dealing with the Cards You Were Dealt

Being a warrior means learning to live with the cards you’ve been dealt.

Having an incurable disease isn’t something anyone chooses.

But it’s not something you can outrun, either.

🌀 You must face the storm.

🌀 You can't sidestep it.

🌀 You can't close your eyes and wish it away.

🌀 You can't pretend it’s not real.

Well, you probably can—but denial doesn’t change the facts.

Chronic illness doesn’t follow any rulebook. It doesn’t ask permission.

It doesn’t care about your calendar or your dreams.

It just… arrives. Uninvited. Unrelenting.

But here’s the thing:

You don’t have to play fair to survive—you just have to keep playing.

Being a warrior isn’t about bravado or heroics.

It’s about acknowledging what you're up against… and facing it anyway.

Even if you’re scared. Even if you’re exhausted. Even if you don’t know how.

Because that—that’s what makes you a warrior.

Being a Warrior – Choosing Hope

Choosing hope means believing in a better tomorrow, even when today feels unbearable.

It’s about recognising the darkness and lighting a candle anyway. Hope isn’t naive—it’s brave.

It’s what keeps me going when my body wants to give up.

Some days, hope is all I have. Some days, I dig deep and remind myself of all the times I made it through when I thought I wouldn’t.

It’s choosing to keep showing up—for my kids, my wife, and myself. It’s believing that there is still purpose in this journey, and that pain doesn’t get the final word.

Being a Warrior – Fighting Back

This is one of the most misunderstood parts of being a warrior.

Fighting back isn’t about aggression.

It’s about refusing to give up. Saying no to despair. Challenging the limitations that society—and sometimes doctors—place on you.

I fight back by advocating, raising awareness, and refusing to be silent.

I fight by trying treatment after treatment.

By showing up at the gym on good days. (well my home gym)

By resting—unapologetically—on bad days.

By living with intention, not just existing.

Being a Warrior – Being Real

This part is vital.

Being a warrior isn’t about pretending everything’s okay.
It’s about being real with where you are.

It’s allowing yourself to grieve, to feel, to cry, to rage.
It’s about saying, “Actually, today is hard.”

It’s the courage to take off the mask. To be seen.
To let others walk with you, even when you feel broken.

There’s strength in vulnerability. Power in truth. Healing in honesty.

One thing I’ve learnt about being a warrior: you don’t have time to be pretentious.
Yes, we fake smiles. Yes, we act okay. We hide the agony to avoid judgement.

But warriors don’t diminish what they face.
Behind the fake smile is someone fighting a battle they wouldn’t wish on anyone.
The pain, the burning, the depression, the anger, hope, failure, struggle—it’s all real.

So when a warrior snaps, it’s not always about you. (well sometimes...but not always 😉)
It’s because the pain is so consuming, it strips away every mask—until you're naked, inflamed, and on your knees… still fighting.

Warriors often feel they can't be real around others. So when they finally break—people see them as rude, not realising what it took to get there.

Being a Warrior – Does Not Mean You Stop Being Human

Being a warrior humbles you. It doesn’t make you invincible.

We don’t take pride in what we’ve achieved because we know the battle’s never over—not until the final trumpet sounds.

People often tell me my story will inspire others. I hope so. But my journey has just begun. Four years of living with CRPS is nothing compared to those living with it for 10, 20, 30 years.

I’m grateful for what I’ve learnt—for still being able to stand. But I still feel every pain, every burn. I still get mad. I still get low. I still feel like giving up.

But by grace—I keep going.

Some of my fellow warriors are my heroes. Just for still fighting.
But even heroes are human.
Today, I may be someone’s hero. Tomorrow, I may need one.

Being a Warrior – Means It’s Okay to Not Be Okay

These past two months, I’ve struggled.
For the first time in four years, I’ve felt disheartened, perhaps even depressed.

Every second month for four years, I’ve seen my psychiatrist. She always asks the same:
“How’s your mood? Are you coping? Should we adjust the meds?”

And I always answered:
“I’m fine. I’m not depressed. I can still face my demons.”

But this time was different. I couldn’t say that.

Why? Because I’m tired. I’m bleeding. I feel at times overwhelmed, like it’s too much.
Not something we easily admit... but maybe we should.

Maybe if we talked more, understood more, outcomes would change.

There’s no shame in asking for help. If we were more honest, there might be fewer suicide attempts.

I have empathy for those who feel suicide is their only option.
It’s easy to judge from the outside. I used to be one of those judgemental idiots.

But there’s nothing cowardly about it. (I am not saying it is okay, nor am I condoning it. None of us know the battles that person face and how much guts and determination it must take to end your own life)

People often feel utterly alone—like society has turned its back on them. And when pain becomes too much to bear, they break.

I had to learn that it’s okay not to be okay. A good friend reminded me of that when she shared this song with me. It perfectly sums up how I felt at that moment:

🎵 Song: “I Am Not Okay” – Jelly Roll

"I am not okay

I'm barely getting by

I'm losing track of days

And losing sleep at night

I am not okay

I'm hanging on the rails

So if I say I'm fine

Just know I learned to hide it well

I know I can't be the only one

Who's holding on for dear life

But God knows, I know

When it's all said and done

I'm not okay

But it's all gonna be alright

It's not okay

But we're all gonna be alright

I woke up today

I almost stayed in bed

Had the devil on my back

And voices in my head

Some days, it ain't all bad

Some days, it all gets worse

Some days, I swear I'm better off

Layin' in that dirt

I know I can't be the only one

Who's holding on for dear life

But God knows, I know

When it's all said and done

I'm not okay

But it's all gonna be alright

It's not okay

But we're all gonna be alright

Gonna be alright

Gonna be alright

I know one day

We'll see the other side

The pain'll wash away

In a holy water tide

And we all gonna be alright

I know I can't be the only one

Who's holding on for dear life

But God knows, I know

When it's all said and done

I'm not okay

But it's all gonna be alright

It's not okay

But we're all gonna be alright

I'm not okay

But it's all gonna be alright:"

Warriors can’t always be strong. That’s not sustainable. Everyone faces storms. What matters is how you face them.

Being a Warrior – Begins with a Mind Shift

Being a warrior begins with a shift in mindset.

It’s about courage, resilience, and a commitment to overcoming challenges—inside and out. Not brute strength, but mental fortitude and a proactive spirit.

Warriors are driven by something bigger. Often, it’s the desire to serve, protect, or inspire—even while suffering.

When I look at fellow warriors, I see people encouraging others in the middle of their own flare-ups.

Being a warrior means choosing to shift your mindset. Your struggle doesn’t have to be a meaningless burden. It can become your motivator—and a tool to help others.

Here are some warrior traits, and how to develop them:

🛡️ Courage and Resilience
Warriors face adversity. They find bravery in fear and grow through challenges.
• Push beyond your comfort zone and confront your fears
• Learn from setbacks and develop strategies to recover.

🎯 Discipline and Focus
They stay focused and build routines that support their goals.
• Establish daily practices and boundaries that support your goals

🧠 Mental Toughness

They withstand pressure and manage stress.
• Practise stress-management and emotional control. Try to stay focussed under pressure.

🌱 Service and Purpose

They live for something greater than themselves. Whether it's serving others, protecting those they love, or fighting for a cause—they don’t live only for themselves.
• Set Clear Goals by defining your values and your mission.
• Serve Others by contributing to your community—even when you're struggling.

🔄 Adaptability

Warriors are not rigid. They know adaptability is crucial. Life throws curveballs, and being able to pivot is part of surviving and thriving.

·        Stay Flexible by recognising when you need to adjust your plans or approach.

🤍 Humility and Self-Awareness

Despite their strength, warriors remain grounded. They’re self-aware, know their limits, and are open to learning.

·        Stay Humble by being open to feedback and growth.

·        Live in the Present by focusing on the now—avoiding the trap of past regrets or future worries.

 

But what if I can’t live up to this? What if I feel like I’m failing?

That doesn’t make me less of a warrior. It makes me human.

I don’t have to be perfect. I just have to get back up—one breath, one step at a time.

These traits aren’t rules. They’re inspiration.

The Merriam-Webster dictionary defines a warrior as:

“A person engaged in some struggle or conflict.”

And isn’t living with a rare disease exactly that?

We fight battles on all fronts—physical, emotional, mental, financial, spiritual.

Our bodies are in conflict. That overflows into everything.

So when a warrior says, “I’m not okay”—that’s okay.

No one gets to judge. They don’t know the journey.

Some days, just getting out of bed is a victory.

And even when it’s not easy, we do it. Because not doing it? That’s worse.

Rest if you need to.

But at some point, get back up—and fight.

 

Hope, Humour, and a Hint of CRPS

So, I did a thing. I published this on my blog in April 2025.

I decided to write a memoir. Not just any memoir—this one’s about living with Complex Regional Pain Syndrome (CRPS), which, if you’re new here, is also lovingly (read: horrifyingly) referred to as The Suicide Disease. Fun times, right?

But before you back away slowly, Hope Undivided: CRPS – Memoirs of an Ordinary Man Living with a Not So Ordinary Disease isn’t just a 300-page pity party. It’s raw, it’s honest, occasionally tear-jerking, often weirdly funny, and deeply personal. It’s a book about pain—but more than that, it’s about faith, survival, parenting, frustration, and the fine art of not swearing at medical professionals. (Too much.) It's about HOPE and the will to never back down.

We’ve reached 16% of our goal on the BackaBuddy campaign, which I’m incredibly grateful for. To everyone who’s donated, shared, or just sent a kind message—thank you. You’ve kept the fire going, even on the days when I felt like tossing my laptop out the window and eating cereal for dinner again.

But here's the deal: we still need R41 800 to cover publishing and printing costs. Think editing, layout, cover design, proofreading, coffee for the writer, coffee for the editor, and therapy sessions for both. (kidding)

The plan is to launch the book this November—fittingly, CRPS Awareness Month. That gives me 2 months to wrap up writing, editing, panicking, and proofreading this beast into something worthy of your bookshelf (or bathroom magazine rack—I’m not picky).

So, if you haven’t yet supported or shared the campaign and you’d like to be part of something that brings light to an invisible battle… now’s your moment. Every donation, every share, and every “You’ve got this!” helps bring this message of stubborn, unreasonable, ridiculous HOPE to life.

Let’s get this book into the world. With humour, heart, and hopefully no typos.

👉 Support or share the campaign here: https://www.backabuddy.co.za/campaign/crps-awareness

https://youtu.be/Qop5XLgwkNc?si=OhwHcJW49yvE5mnc

 

CRPS My Journey: Chapter 31 - Back-A-Buddy: Hope Undivided!

Over the last couple of years I have documented my journey with CRPS through my blog. 

In 2021, my life changed forever when I was diagnosed with this rare, excruciating neurological condition, Complex Regional Pain Syndrome (CRPS), often referred to as the “Suicide Disease” because of the relentless, unyielding pain it causes.

For months, I felt isolated, misunderstood, and defeated. But somewhere in the middle of the chaos, I picked up a pen and started writing — not to escape the pain, but to give it a voice.

Today that voice, that started with this blog, became a memoir: Hope Undivided – Memoirs of an Ordinary Man Living with a Not So Ordinary Disease. A raw, brutally honest account of what it’s like to lose the life you knew, and still find reasons to get up, love fiercely, and hope anyway.

To bring this book to life I need everyone's support. I have created a Back-A-Buddy campaign to help me cover the necessary expenses to have my book published.

This campaign isn’t just about me. It is about getting this book into the world — not for fame, but for purpose. For awareness. For the countless others living in silence with CRPS or other invisible illnesses. For the spouses, parents, and children who walk this road beside us.

Your support will go toward:

Publishing and printing costs (Professional editing and proofreading, cover design, layout, ISBN, first run of books)

CRPS awareness initiatives tied to the book’s launch (Fund CRPS awareness projects and educational talks.)

Translation and accessibility efforts (including audio versions for those living with disabilities)

Distribute my book to hospitals, doctors, and people who need it most.

Stay mobile and present for my wife and two sons—who are my reason for everything.

My dream is simple: to reach those who feel unseen. To show them they’re not alone. And to help shift the conversation around pain, masculinity, chronic illness, and resilience. There is always HOPE!

If you have followed my journey, and Hope Undivided resonates with you — whether you’ve battled chronic pain, supported someone who has, or simply believe in the power of stories to heal — I invite you to partner with me.

My goal is to launch my book in November as this will fall together with CRPS Awareness month.

🎁 Rewards – Thank You for Helping Share This Story

(Every donation matters. Whether it’s a donation, a share, or a message of encouragement—you are part of this journey. To show my thanks, I’ve created a few ways to say thank you.)

💛 R50+ | Gratitude in Ink

• A thank-you email and shoutout on social media
• Name on the digital Supporters Wall

📘 R250+ | Signed with Hope

• All of the above
• Early access to the eBook
• Digital quote card from the book
• Name in the “Hope Undivided Heroes” section

📦 R700+ | Bound by Courage

• All of the above
• Signed paperback copy (SA only)
• CRPS awareness bookmark
• Behind-the-scenes video or voice note
• Invite to a live online Q&A

🌟 R1500+ | Carriers of the Flame

• Everything from earlier tiers
• Name or dedication on the Legacy Acknowledgement Page
• Second signed copy donated in your name
• Option to include a 20–30 word message in a digital tribute section

🙏 Final Words

Your support means more than just bringing a book to life. It’s helping me give CRPS a voice. It’s reminding people that even in suffering, stories matter. People matter. Hope matters.

Let’s publish Hope Undivided together.

With gratitude,
JJ Ritter

Short description of Hoped Undivided

What happens when your life’s path takes an unexpected turn—when dreams shatter, pain becomes a constant companion, and every day is a fight for normality?

In these raw, candid memoirs, JJ Ritter shares his powerful journey living with Complex Regional Pain Syndrome (CRPS), known as the "Suicide Disease." Through profound honesty, sharp wit, and deeply personal reflections, JJ explores the turbulent waters of betrayal, resilience, family bonds, and redefining hope.

This book isn’t about finding a cure, nor does it claim to have all the answers. Instead, it’s an honest invitation to walk alongside one ordinary man's extraordinary journey through chronic illness—an inspiring testament that hope, strength, and purpose remain within reach, even in life's most painful moments.

Even when your body betrays you, your spirit doesn't have to.

If you've ever faced a moment that forced you to question your strength or wondered if you're alone in your struggles, this story is for you. Because no matter the challenges we face, one truth remains clear: life, with all its imperfections, is still a journey worth taking.

 

 

CRPS My Journey: Chapter 30 - Always show up!

"You are what you do, not what you say you’ll do.” - -Carl Jung

'SHOWINGUPNESS" describes the degree to which reliability, empathy, care, intentionality, thoughtfulness, and embodiment of “just being there” that is consistently demonstrated by someone. It speaks to one’s willingness to put our loved ones (and/or ourselves) first, but people with great levels of SHOWINGUPNESS do so willingly and gladly. It requires vulnerability—to show others and ourselves that someone or something really matters to us. It also requires sacrifice—it might mean having to delay, lose, or let go of another activity, person, or thing that we care about, when doing so helps us to better prioritize showing up in a truly meaningful way. - Kaitlin Kindman, LCSW

It has to do with life and character and integrity, and it is something that I think we all need to hear and reflect on. Showing up means being there for others, regardless of who you are or what your beliefs and circumstances are. It is human nature to wait for and expect others to show up, but when last did we show up for someone else. It is like forgiveness. Why do we forgive others, when they still wrong us? We do it to set ourselves free. But unlike forgiveness, showing up not only builds or show our character, it also empowers and motivate others.

Something that I have learned, especially when my kids were born, was to be present. It is so easy to get busy with things, whether it be work or social responsibilities, that we often miss out on things that really matter. That extra 15 minutes spent at work to get stuff done that could have waited till the next day, while your kids are excitedly waiting for you to pick them up from school. Or that project in the garage that you just need to finish, as you only have the weekend to do it, while your family have to keep themselves busy. I am not saying that these things do not matter or is not important, but we need to get our priorities straight. I have made myself guilty of this many times.

I remember when we were kids, my mom often used to say to my dad, "Nobody is going to raise a statue in your honour", when he worked long hours away from the family. Hours that he did not always get paid for, but that he still put in due to his strong work ethics. And although his heart was in the right place and he had these strong work ethics that he also installed in us as his kids, those were hours that he would never get back. Time with us as a family that was lost for ever. 

Unfortunately, it has become virtually impossible for people nowadays to not put in extra hours, or not have a second or even third job, just so that they can just make ends meet. That is the sad truth. Yet, in our children's eyes they do not always understand why we are doing this. What they experience is that mom or dad is not showing up when they miss a game, or work late nights.

As I said, I have often made myself guilty of this in the past. So lately I have tried to show up as much as possible, whether it be a hockey or rugby match, golf, a school play...or just taking them to birthday parties. I have even started to take my kids with me when I am busy with some project in the garage, trying to teach them skills and values, spending time with them even when I have something that need to be completed, and allowing them to be creative. It is not always easy, and it is sometimes hard to stay calm and not get irritated, but when done right it is very rewarding.

Showing up for their hockey or rugby matches are crucial. Whether they are playing, or sitting on the bench as a reserve doesn't matter. What does matter is showing up either way to support them. Those are the moments that they will remember, the times that you have been there, having them know that they are the most important people in your life.

Zoey, thank you for showing us the value of showing up

Another way that I have experienced lately that we need to show up, is not only when they fall ill, but also when they experience hurt and loss. A couple of days ago Zoey, their dog became ill. Watching the kids, you could feel their own helplessness, how they were trying to cope with this, while trying to make sense of it all. I had to take Zoey to the vet, and the prognosis was not good. She had started with liver failure, and there was nothing that could be done for her. I stood before one of the hardest decisions that I had to make in a very long time. I could bring her home with medication, but she would suffer until she eventually passed away, or I could have her euthanized so that she would not live the rest of her life in constant pain, eventually ending in a painful death.

I phoned Teresa, and we decided that we were going to do the humane thing, not matter how hard and heart-breaking it was, and that we were not going to bring Zoey home first. We wanted the kids to remember her as she was, and not as she had become towards the end. We would however bring her home afterwards and give her a proper burial. 

Standing there, with my niece at my side, and with Zoey still trying to be strong for me, her person, I realized that even in her pain, she tried to show up for me. And then it hit me, no matter how hard it is going to be, I could never leave her alone at the end to face this alone. There was nothing to think about. I had to show up. I wanted to show up, for Zoey, and for the kids, as she has always been there for us. So I stayed with her till she drew her last breath. It was difficult. It was gut wrenching. But I know that right at the end she was calm and that she knew that she was loved. And as much as this whole experience broke me, I know that in life there are many people that do not have that opportunity to spend their last moments with those that they love the most.

We took Zoey home, and put her in a safe place until I could go fetch the kids. Mufasa, the cat, could feel that something was not right, and when we opened the back of the car he immediately jumped in, something that he never does. He walked towards Zoey, lying wrapped in her blanket, and sniffed at her as if to say his last goodbyes. Then he came and sat next to me with his head against me as if to try and comfort me, while looking for comfort himself.

When the kids got home, we sat them down to give them the sad news. They were completely broken, and started dealing with this in their own way. The first thing that Malan asked was whether Zoey was alone at the end. I am so glad that Teresa were able to honestly reassure him that both Sharné and myself stayed with her, and held her till the end. And again I realised that in his mind, through all the heartache and sorrow, his dad showed up. Perhaps it does not soften the blow that much, and it definitely does not take away the pain, but it does make him feel safe knowing that someone was there for Zoey when she needed it the most.

We offered the kids an opportunity to go and say their final goodbyes, although her spirit has already left her body, but they did not want to stay for the burial - which was fine. All the while Mufasa was sitting on the tree house, watching what was happening in front of him, dealing with this loss in his own way. Even animals do. Yes, Mufasa and Zoey did not play with each other, in actual fact, Mufasa tried to avoid Zoey as far as possible, but I know that he felt the loss just as much as we do. And he knows that his people is hurting and also need his comfort - so he showed up.

Neck Operation

It has been 3 weeks since my operation and just a quick feedback. So the operation went well, and the doctor is pleased with the outcome. As I was waiting for the theatre, he came by to remind me that the main focus of the operation is to relief pressure and prevent paralysis. Should I be without pain afterwards, that would be a bonus. When he opened up, the spinal cord was grey in colour due to the compression. The moment that he removed the disk, the pressure was released, the spinal cord relaxed and returned to a pinkish colour. The operation was done just at the right time. Should we have waited till next year it might have been too late. The fact that I had no mobility symptoms (apart from the constant pain) was a blessing in disguise. 

Hesti asked me how do I felt about the fact that the operation, that we have tried to avoid for three years, was done. In hindsight, knowing what I know now, I am thankful that I was in the position where it still could be done. Above all, the Lord showed up in an amazing way by preventing what should have been the inevitable outcome. The fact that I had no mobility issues, despite what the MRI showed and the actual pressure under which the spine was, was only the Lord's providence. We often are so focused on the trials and tribulations in our lives, that we often do not see what the Lord is protecting us from. I should have been in a wheelchair, yet I showed no signs in mobility loss. This was not by my own greatness, but only by God's grace.

How do I feel after the opp? Better than expected. Yes, my neck is sore at the back, but apart from sensitivity around the wound at the front of my throat, I do not really have pain at the front of my neck. At the back it does feel at times like the skin has been torn off, or that that my neck is burning, and then there is the extreme pain. Did the CRPS spread to my neck? Well only time would tell. At this point I am not ready to jump to that conclusion yet, as the symptoms are still in line with what is to be expected from having your neck and organs bend and pulled in all directions. One thing to remember is that due to the compression before the operation, my muscles and tendons has "shrunk" or gotten lazy, so with the fusion and the spacer, and the decompression, my spine is "longer" again, as it should be. This means that all those muscles and tendons that became so lazy with the compression, is being stretched now to regain its intended position. So yes, what I am feeling at the moment is absolutely normal. Also the fact that Chucky did not flare up, but behaved himself, do somewhat reassure that the possibility that the CRPS may have/might still spread to my neck seem to be minimal - which I am very grateful for.

The issue with living with Chucky and his antics for so long is that there is a good and a bad side to this. The good thing is that you learn to live with and through extreme pain, and learn how deal with the pain. The bad thing is that you learn to live with and through extreme pain, and learn how deal with the pain. So although you have learned to recognize pain and flare-ups and have an arsenal of coping mechanisms, it is easy to just push through the pain that present in different areas of the body due to how "normal" pain has become in your life. And this is then where the line between referring pain (pain that you feel in a different part of the body as where the injury is) and CRPS pain can sometimes become blurry. 

So one of the coping mechanisms that I have learned, is to give it time and to stay level-headed - not to put the cart before the horse so to say. I cannot control everything in life, but I can focus on the here and now. I can focus on keeping Chucky calm, while focusing on recovering from a neck operation, without worrying about what may or may not be in six months from now. And if there are little things that present itself, that tend to point towards what we dreaded might happen...well then we deal with that as it happens. 

For now, I am just happy to know that paralysis is off the table, that Chucky has not flared up, and that, although extremely sore, there is a short term explanation for that, so that we can work at getting better. It still looks as if I have two Adam's apples and at times feels like I am swallowing stones, but that is due to the trachea, veins, vocal cords etc. that had to be pulled away so that they could get to the spine. This will still take a while to heal, and so will the temporary raspy voice that it left me with (Dysphonia).

Thinking back at the operation, one of the biggest blessings was experiencing friends and family showing up in support. Not necessarily in showing up in person at the hospital, although some did, but having my back in many ways. With a disease like CRPS, people often feel outcast and alone, leading them to contemplate suicide. If they only had people showing up when they needed it most. 

Teresa went with me to hospital, and stayed till long after the operation. She showed up - as she always does - which meant the world to me. I asked her to stay home over the weekend, but she drove 60 km every day to be with me. For many CRPS warriors that I talk to, this is something that they often long for, but that is non-existent for many of them. But not only that. Even having a doctor or medical professional standing up for them, is often only wishful thinking on their part. 

I was privileged with Dr King and his team, and how he especially showed up. He visited me 5 times from when I was admitted till when I was discharged to make sure that not only the operation itself went well, but also that the CRPS was contained, reassuring us throughout that he did and would do everything humanly possible to protect Chucky and prevent the spread of CRPS. How often do we complain that doctor's visit us only once or twice over a weekend in hospital, if we are lucky? I've been blessed. And he did not only show up for me, but also for Teresa in the way that he treated her, spoke to her and supported her through it all. 

Another person that showed up, was Hesti, my physio. She was not on hospital duty that weekend, but she showed up - physically. As the nurses were turning me after the operation, I looked up and who was looking through the curtain? Hesti. She came to check in on me and see if the operation went well, and to hear how Chucky was handling it. And yes, I could actually confess that even Chucky showed up, which in itself was a great blessing. I would not want Chucky flaring up, while going through an operation like this.

As much as there are people in our lives that do not show up when we need them, we should not forget those that do show up and that want to show up. These are the ones that gives us a new perspective and hope on life. It is often much more difficult to show up, than it is to just stay away. If I am not in the mood for people, it is much easier to stay away from my colleague’s farewell party, than blessing him with showing up despite how I feel. If my son has a rugby match, and the possibility is great that he might stay on the bench and not even play, it is much easier to justify not showing up because I am not allowed to drive for two weeks due to an operation and the fact that I am still very sore and not that mobile. It is a totally valid reason for not showing up, and besides he might not even get the chance to play. Yet, putting aside my own issues, dressing warm, taking my pain meds, taking an Uber or calling someone to take me to that match in order for me to show up for my kid, despite my own discomfort, has much more value and meaning in my child's life - and also in mine.

Today, is all we got. Yesterday we can never have back. Tomorrow may never come. Always ALWAYS show up...no matter how uncomfortable you may feel.

Years ago Al Denson sang a song, "He's watching me" about a blind father that showed up when his child needed it most, and I want to leave this with you:

He's watching me

Back in '63 my little league career had just begun

I had two left feet yet I believed

That I could rise above

I watched the bigger kids

And prayed the coach would put me in

But I sat on the bench

Well, my biggest fan sat in the stands

For each and every game

And though he was blind, he listened for

The coach to call my name

"Please, coach, let me play"

 

You see my dad, he's watching me

Yes, my dad's so proud of me

Even though my dad can't see

He's watching me

You see my dad, he's watching me

Yes, my dad's so proud of me

Even though my dad can't see

He's watching me

 

Well the weeks went by

And summertime was almost at an end

It was a special day, I just had to play

May not get this chance again

The coach put me in

And underneath the stars that night

I got my first hit

When I crossed the plate

Tears on my face, I looked up in the stands

I nodded to the empty seat

That used to be my dad's

The coach said "Sorry, son

Your daddy wasn't here to see"

And I said "Yes he was"

I guess you didn't hear the news

My dad, he passed away

And I know Jesus touched his eyes

And for the first time

 

My dad, he's really watching me

Yes, my dad's so proud of me

Up in heaven dad can see

He's watching me

You see my dad he's watching me

Yes, my dad's so proud of me

Now in heaven dad can see

He's watching me

Up in Heaven daddy sees

He's watching me

Oh, he's watching me

 

Oh, daddy

 

 

Always, ALWAYS show up!