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!

 

 

CRPS My Journey: Chapter 29 - You may delay, but time will not. — Benjamin Franklin

“Time is what we want most but what we use worst.” — William Penn

It has been a while since my last post and I thought that I would have more time to sit down with the next chapter, but alas. Strange how time passes by so quickly. How often do we say, "Don't worry, we've got time", just to wake up one morning to suddenly realize that time has run out? Procrastination - the act of putting things off till the last minute. We all do it. "I will start losing weight, starting next week". "I will start with the project on Wednesday". "I will spend more time with my family when I get home". Do any of these sound familiar?

Dawson Trotman once said, "The greatest amount of wasted time is the time not getting started." We often have good intentions and we spend a lot of time planning (which is not a bad thing per se), but often this become so time consuming that we fail to start. And when we eventually do start, we find that time either is running out, or has already run out.

Lately I have tried to focus on finishing tasks that I have set aside due to pain or time restraints, finances or just pure procrastination. Whatever the reason(s) were, regardless of the validity of the reason, I often found myself at the tail end of time. And with my health this was no exception.

It has been almost four years now since I started seeing Dr King at the Spine Centre. Initially the plan was to monitor the degeneration of my vertebrae over a three-year period. Last year as we reached the third year of this three-year period. We agreed that, with my condition seemingly not progressing as rapidly as we feared might happen, that we had beaten the odds. This would mean no operation, which was awesome news, as this was exactly what we tried to prevent as far as possible, partly because of all the risks that came with an operation such as this, but also (perhaps even the greater reason behind this) because we wanted to avoid the possibility of the CRPS spreading to my neck.

Well I saw Dr King earlier this year for a follow-up, and he insisted that we do a MRI, just to make sure that we do not miss anything, as the last MRI was four years ago. He still did not want to operate, and told me that the only way that he would decide to operate, is when my spinal cord and my spinal fluid is being compromised.

A couple of weeks ago Teresa and I both went to see him for the results, and things did not look good. He sat us down and started asking if I had any symptoms, apart from the normal pain, to which I replied no. He explained that sometimes MRI's can be over sensitive, but looking at mine, and zooming in on the problematic vertebrae, he was a bit perplexed. He showed us where c4/5 is pinching the spinal cord creating a barrier whereby little fluid is allowed to pass by. This meant a compromised spinal cord - which we feared.

He asked me to stand up, walk from one side of the room and back, do the heel to toe test, turn around quickly among some of the tests. He had me press up and down with my hands, lie on the bed and do more reflex tests. And this is what baffled him, as according to my scan I should have symptoms like struggling with buttons, falling over, being off balance. In fact, I should have been in a wheelchair. Yet I passed all the physical tests. Yes, Chucky drops stuff from time to time, but that is to be expected. But for all the other tests, I seemed to be healthy.

So I asked, "Doc, is this good news or bad news?", to which he replied. "This is good news, weird and mind boggling, but actually great news. This means that the symptoms can be prevented". And then he explained it like this:

"First of all, I am still hesitant to operate, as we know that the possibility is there that the CRPS can spread to your neck, which we want to prevent at all cost. In more than 700 of these ops that I have done, I never had a patient present with CRPS in this area, BUT unfortunately it is documented, so the risk is still there. Especially in your case with the degree to which you developed CRPS.

However, unfortunately we have gone past the stage now of waiting and looking at an operation as a possibility, to looking at an operation as a necessity. Because of the deteriorating state of the spine, and while you do not present with symptoms, we have to operate to prevent you from getting those symptoms. Should we leave this for say next year, and you develop any of these symptoms, we will still be able to repair the spine, but we won't be able to reverse the symptoms. So if you were to land in a wheelchair, you would then stay in a wheelchair, even though a fusion was done. Therefor we need to act now.

Luckily it looks like we only need to do C4/5 for now, as (although the others do not look great) there is still enough space around the other vertebrae. Also by doing only one fusion, we will hopefully minimise the risk of CRPS flare-up or spread. Obviously with the operation there are other risks like losing arm and/or bodily functions, losing your voice or becoming raspy (usually temporary), secondary infections even bleeding out (worst case scenario should something go wrong), but we will try to minimize all of these as much as possible. Any operation has its risks.

This is a routine operation. We cut on the front of the neck, next to the vocal cords and next to the spine. We take out the cushion between C4/5 and replace it with a spacer, before we fuse the two vertebrae with a metal plate. It will take about a year for the bone to fuse, but you should lose very little movement, and the healing process should be fairly "quick "(in relation to other ops). You will go in the Friday morning, we keep you sedated in ICU for the rest of the day, the next day the physio will visit you. If she is happy that there are no side effects, you will be moved to a general room. I will come by on Sunday, and if you feel okay you will be discharged. A week or two at home and you should be able to return to work. After that I will see you on ten weeks, then three months, six months and then again one year to make sure that there are no complications and that the healing process is going as it should."

Somehow, I thought, hoped that we would still have time. The one thing that probably helped to postpone it this far and that helped to keep the symptoms at bay, apart from the Lord's grace, was my battle with CRPS. Fighting to manage Chucky probably occupied my brain so much that my brain did not notice what was happening with my spine. Well this is not a medical fact, so don't quote me on that. However, I would like to believe that this was the case, as it would somehow give purpose to this horrendous disease called CRPS, aka Suicide Disease - even if it was just to explain in my own mind what I was dealing with.

My op is scheduled for Friday 2 August 2024. How do I feel about it? Everybody asks me that, and I know what people would expect me to answer, but I don't know. Perhaps indifferent or detached? Perhaps it hasn't sunk in yet, or perhaps I have already dealt with this as I had prepared myself over the last three years for the inevitable. Either way, this is something that I cannot shy away from any more. Time, which we thought was on our side, finally started to catch up to me. And so many of the things that I have wanted to do, that I have planned to do, is still unfinished. Do I have regrets? Of course I do. The problem however with regret (and I have said this before), is that regret always comes too late. It does not necessarily mean that you won't have time to fix things, but you will never be able to get back the time and opportunities you have wasted.

Life is short and every moment counts. Don't let a moment pass you by to let someone know that you love them, that you care for them. Don't waste so much time on not getting started. There's a famous quote by Ray Bradbury: “Sometimes you've got to jump off a cliff and build your wings on the way down.” Take chances and never take anything for granted.

In the immortal words of Mark Twain:

"Life is short, break the rules. Forgive quickly, kiss slowly. Love truly. Laugh uncontrollably and never regret anything that makes you smile."

Catch you on the flip side!

 

CRPS My Journey: Chapter 28 - Remember, so that you may never forget!

Sitting at the fire, cold beer in my hand, watching my children arguing over who has the best hot-wheels, I am suddenly reminded again of how quickly life can pass us by. In a year or two, they won't even remember what they argued about. And a lifetime from now, tonight will only be a faint memory to them, if any. 

Remember!

My dad passed away last month and thinking back on our life together, I know that we argued a lot, at times because we were too similar...and other times because we did not see eye to eye on a number of things. The age old issue of the young that thinks he is wise, without life's experience to back him up, and the experienced elder, without the ability to accept and conform to the changes that life bring. On the one hand the younger generation that believes that what is happening in this new age, cannot always be solved with the knowledge of a few decades ago, and on the other hand the elder that is not able to accept that what has gone before will not always be relevant today. 

In retrospect it is easy to see now how futile those arguments often were, and how, if we had just taken the time and listened to each other and tried more to understand where the other was coming from, we would have been able to build more memorable memories together. After my dad had a stroke a couple of years ago, he never fully recovered. He had no physical impairments, at least not in the first couple of years after the stroke, yet his short term memory has been affected. This became more and more challenging, especially towards the end when he started to lose his ability to communicate with those around him. 

I remember my dad as being a proud man. From the age of 14 years old he would take the produce to the market, driving at night to miss the traffic officers. My grandfather passed away when my dad was 8 years old, so himself, my uncle and aunts had to help my grandmother to work the lands and keep the farm going. He did not have anyone else that was able to deliver the produce, so he had to do it himself. Eventually the cops realised that they would not be able to prevent my dad from doing this and they arranged that he would be able to get a special license - something that would never be possible today. When they had to sell the farm, he joined the same traffic cops that was so lenient towards him, and he wore that badge with great pride. He eventually worked himself up through the ranks and invested himself in his work wholeheartedly.

The hardest part for him, of surviving the stroke, was probably the day when his licence was taken away from him, and he had to face the fact that he was not able or allowed to drive any more. I think that broke him. It was nobody's fault. It was done to protect him, as well as those around him. Unfortunately, that is the path that a lot of people have to take as they get older. 

My dad was a humble man, always believed in, if you cannot say something good about someone else, then you rather shut up. He lived for his grandchildren, and regardless of whether any of us 3 sons screwed up and even rejected him or forsake him, he was always there for us, a safe haven to where we could return without being judged. There were many a time during the past few years where I longed to be able and sit down and talk to him and ask for his advice, when I was not able to because of his inability to communicate. Something that I never thought that I would need or want when I was younger. I always felt that we had no connection growing up as he was always working, and it often felt like I had to grow up alone after my mom died when I was 13 years old. It was only later in life that I realised that it must have been hard for him to take care of a teenage brat, while trying to deal with the pain and sorrow of losing the love of his life, and still keep the lights on as well. Yet he never backed down, and he never projected his own suffering, pain and grief onto us.

Liam and Malan did not take it well when he passed away. Malan would cry uncontrollably and Liam put on this strong facade of not being phased by the loss that he just experienced, something that he had not experienced before and therefor did not know how to deal with this immense pain and heartache. Much like myself, when my mom passed away. Teresa lost a father and was broken. Myself? Malan asked me about a month after my dad passed why I never once cried? How do you explain this to a twelve-year-old boy?

It was not that I did not love my dad. I did and I missed him tremendously, but I think (apart from the emotionless effects of the medication) I have had time to say my good byes or process the inevitable when he was still with us. The last couple of years was tough seeing him in a state where his health was deteriorating more and more, knowing that we could not do anything to prevent it. I often felt that, looking at him, that what I saw was not living, not for him, nor for my stepmom who had given up everything to care for him, putting her own life on hold. I think being there when he passed away, with the last memories of him responding to Malan en Teresa's voices and the touch of their hands, gave me inner peace. He did not struggle at the end; he did not let out a big final last breath. He just quietly passed on, peacefully. And the fact that he had no pain anymore as he entered the throne room of God, was comforting. 

On the one hand I would have loved to talk to my dad about my fears when I was diagnosed. On the other hand, I am thankful that he never knew about CRPS and my struggle with this disease. Although a reality, I don't think any father should lose a child or experience their children suffering with such a horrible disease, causing them to feel helpless. This has got nothing to do with the support system, this is just my perception. As a dad I would lay down my life for my kids, if it meant preventing them from having to suffer.

Why do I share this? I don't know. Perhaps it is a way of working through this event in my life. Or perhaps it is because looking at my boys as they argue about hot-wheels, I suddenly realised how short life really is. I don't want my boys to remember me as a distant dad that was constantly in pain, not able to make memorable memories with them. When I get to that point where I may become paralysed, or completely shutting down (not saying I would, but no-one can outrun time and life), and my kids are sitting next to my bed, what will they remember? What will they carry with them when I am not there anymore? Will they have absolute peace within, knowing that I am in a better place? 

No-one wants to talk about death, yet no-one can outrun it. This is the one thing in life that is certain, that we all are going to die, eventually. What do we do with the time that was lend to us for this short period? 

The aftermath

Following my dad's passing, it was as if Chuckles was feeling my loss as well. Perhaps the fact that I was not able to show emotion, filtered down to him, causing him to gorge himself in the emotional distress that was to be expressed through burning, extreme pain and swelling. After a short hiatus, Chucky stepped back in his full glory, and to be frank, he has not left since. This led me to read up about Impaired Empathic Abilities among Patients with Complex Regional Pain Syndrome (Type I). 

The purpose of these studies was to assess correlations between empathic abilities and multidimensional aspects of pain. But what is empathic abilities? Researchers define it as "the ability to sense other people's emotions, coupled with the ability to imagine what someone else might be thinking or feeling or the ability to understand the experiences and feelings of others outside of your own perspective." Although the studies mainly deal with the ability of patients with CRPS 1 to show empathy towards other people, it did make me think of my own ability to feel emotions and the effect that it has on Chucky. A phenomenon called embodied emotion.

Embodied emotion suggest that emotions have the ability to affect the body. A person may be aware of these emotions, or these emotions could be subconscious, thus being outside a person's awareness. The challenge being when these emotions are subconscious, as they can become difficult to manage and therefor continue affecting the body. Researchers suggest that this has to do with how the brain and the nervous system process emotions. These sensations in the body functions as signals that help people to become aware of feelings or emotions that require their attention - a theory known as the "somatic marker hypothesis".

Reading up on this really resonated with me, as this was exactly what I was experiencing. Thinking of how I am stripped of emotions, or rather of the ability to feel emotions, even with the death of my dad, and how Chucky started to flare-up at exactly the same time, started to make sense. In the past I have learnt that, usually before something like the flu or some physical illness or event, Chucky would start to flare, signalling that something was brewing. In the same way it seems that he had decided to be the harbinger and/or outlet for my emotional distress. It is as if my brain and my nervous system is channelling my emotional distress into my hand, as a way to create a release mechanism.

Something else that I have been reading a bit recently is the effects of hypnosis on CRPS. I have asked around on some of the support groups whether there was someone that had experience with this. Sorry to say, that there were few to none that replied that they had tried this. Trying to find studies on this has also not been as fruitful as I have hoped. Few studies have been done on the effects of hypnosis on CRPS. Some studies suggest that Hypnosis can effectively be used as part of the treatment for CRPS, but also stress that not everybody will benefit from this. Unfortunately, hypnosis is not a cure that will take away CRPS. What it does do, is to assist you in dealing with the disease and teaching you even more coping skills.

I have reached out to some hypnotherapists in the area to find out if they were able to assist with hypnotherapy to treat CRPS, and how they would be able to do this. The results were as follow: Some of them claimed to be able to assist with and even treat Chronic pain successfully, yet speaking to them I soon realised that they did not know anything about CRPS, and after I explained what CRPS was, they confessed that what they understood about Chronic pain, did not even start to comprehend CRPS. Clearly their understanding of Chronic pain did not include CRPS.

A second group claimed that although they did not know about CRPS, they believed that after the first session, they would be able to build a baseline from which they believed that they would be able to treat CRPS. Perhaps even cure it. RED FLAG!!!

A third group immediately confessed that they did not know what CRPS is, although they have helped others that suffered from chronic pain, but that they were willing to study up on CRPS and learn more about it. They also suggested a first session to determine a baseline, but more so to see whether hypnotherapy would indeed be able to assist or not, giving no guarantees, but offering to investigate the possibilities with me with an open mind.

I am yet to try this, and if I would, it would be with the third group, as they seem more likely to take an investigative journey with me, rather than offering a false cure. Hypnosis is explained as "a changed state of awareness and increased relaxation that allows for improved focus and concentration." The better health channel explains as follow: "Some researchers believe that hypnosis promotes particular brain wave activity that allows the mind to take in and adopt new ideas, while others suggest that hypnosis accesses the 'unconscious mind', which is more open to new ideas than the rational 'conscious mind'."

So in short, hypnosis seem to be a more in depth way of practicing self-awareness. Unlike what is portrayed on television, the hypnotherapist that I have spoken to assured me that you are also fully in control and can get "out" of the tranced state whenever you want to. There are even courses on how to do self-hypnosis. 

Have I tried it yet, either of them? No. Will I ever try it? Most probably yes, even if it is only to have the experience and to see how it would be able to assist me in my treatment of CRPS. What do I have to lose? Even if it will be able to help me with dealing with my emotional distress or lack of emotions, then it would definitely be something to explore further.

Any treatment or coping mechanism that helps me to keep moving forward, is worth pursuing. And if it means less relying on medication, and regaining more control over this disease, then it is a win-win.

Retreating to my inner self!

By now the kids had started to settle down a bit. Still playing with their hot wheels, they managed to find a way to play and work together, building tracks, making ramps and challenging each other to do better. In the warm glow of the fire, I look at Chucky, thinking about the rough start that we had three years ago, and how far we have come. At least it has been a while since I wanted to put him into the fire - fighting fire with fire. I think of my dad and how much we could have done differently, but then I am also reminded of those specific events that were memorable, some of them that I have almost forgotten about over the years. I think of my own brothers, how we do not really talk any more, well the one at least. Not everybody is destined to be in your life forever, not even family. Some were meant for a season, while others were meant for life. And that is fine. It is life. I look over at my kids again and pray that they will stay close for life.

Strange how life follows the same patterns in all areas of life. Whether it is dealing with our relationships with those close to us, or dealing with illness and disease, or dealing with your own humanity and mortality, there is always something there to connect one thing to another. Life is always trying to rectify itself by adjusting to whatever direction it has taken. Life is not a smooth ride, nor does it move in a straight line. At times we are in control, and then there are times when it feels like life has taken off without us, leaving us stranded in total chaos. Those times that you wish that you could just push the pause button on life to allow you to catch up. Unfortunately, life does not work like that. But maybe that is just it. Perhaps if we focus more on the now, enjoying the moment, instead of worrying about what could have been or should have been, life might not pass us by so quickly. 

Looking at my kids, it is clear how easily we can remove ourselves from life. How many of us have become spectators rather than participants in our own lives? For me CRPS has done that, although it is probably not fair to lie everything at the foot of CRPS. It is like saying "the devil made me do it" - we often give the devil too much undeserved credit for bad choices that we often made ourselves. In the same way, it has become easy to blame everything bad that happens on CRPS. And yes, perhaps for a great deal, CRPS is to blame, but I still have the choice of how I will react to the curve balls that this disease throws at me. And looking at my kids I realise that the best way to convey this message to them, is to have them see me as someone who never gives up, just as my dad did when my mom passed away. 

Thanks dad for showing me the way! And thank you, the reader for allowing me to share this part of my journey with you.

 

  

 

CRPS My Journey: Chapter 27 - "Fear (like quicksand)...the longer you stand in it, the harder it is to move."

“Courage is resistance to fear, mastery of fear, not absence of fear.” – Mark Twain

Oxford Dictionary:

fear (noun): an unpleasant emotion caused by the threat of danger, pain, or harm.
fear (verb): be afraid of (someone or something) as likely to be dangerous, painful, or harmful.

At the start of a new year, sitting next to the beach with my family, I have had some time to contemplate on the term "fear", how it affects the human psyche, especially when dealing with Chronic pain and how it affects the outlook on our future. For many of us, fear has become an integral part of our being, whether we use it as a survival mechanism, a motivator, or whether we simply give into it due to an emotional inability or lack of strength to work past it and overcome it. I don't think there is one person in this world, that has not been confronted by fear at some point in their lives. The sad reality is that for many people, fear has become an all-consuming part of their lives.

I remember when I had my operation, that started all of this. My greatest fear at that time was to receive anesthesia, as I usually get sick afterwards. Never would I have thought that that fear will be replaced with greater fears that would set of a whole chain of fearful events. Whenever I felt that I have reached my limit, the next fear would rear its head, and another and another - each time worse than before (or so it felt). Some fears I could see/feel creeping up on me, while others just sprung on me like a wild cat. I soon had to realise that I cannot live my life by what my fear(s) "predicted" MIGHT possibly happen. In some instances my fears might have been justified, but in other instances it had no justification at all. It has become so easy to live like a tortoise, continuously retracting my head in my shell, living in fight or flight mode all the time.

Looking at the new year that lies ahead, I cannot but wonder to what extend we will allow fear to guide our thoughts, actions and abilities in the days to come. For some of us it may be the familiarity of living in fear that keeps us there - a false sense of "security" where you know that you need to escape that fear, but fear the unknown beyond that fear..

Frigophobia - a persistent, abnormal, and unwarranted fear of coldness, despite conscious understanding by the phobic individual and reassurance by others that there is no danger. It is also known as cryophobia, cheimaphobia or cheimatophobia.

For others it may be the fear of fear itself. Fearing the emotions that you experience when fear overcome you.

Phobophobia: is the fear of fear itself, but more specifically, of the internal sensations associated with that phobia and anxiety, which binds it closely to other anxiety disorders, especially with generalized anxiety disorders (free floating fears) and panic attacks.

Regardless of the reason why we entertain fear in our lives, we need to agree that fear, although a valid basic human emotion, can be a useful instinct...but can just as well be a disruption in our lives when not managed, thus allowing it to get out of control. Fear is programmed into the nervous system and works like an instinct to protect us. From infancy, our survival instinct is to respond in fear when we sense danger or feel unsafe, but it can also originate from imagined dangers. In such instances it can lead to distress, and when left untreated, it can become so extreme that it can lead to an actual threat.

This made me think of fear in my own life, especially living with CRPS (and the connection between fear and CRPS). A known fact is that fear can cause a variety of anxiety disorders. Anxiety on the other hand can manifest in a physical form through muscle spasms, muscle twitching, cramps, pulsing, throbbing, tremors, and involuntary muscle movements. These symptoms have a direct impact on CRPS and are also symptoms often associated with CRPS.

For many (most) of us living with CRPS, fear has become a part of our everyday lives. Fear for the unknown - fear for how our body will react on new challenges. Fear for the known, that the things that we are attached to will come to an end, but also fear for what we know will follow when we step out of our comfort zone, or do something that we know will end in flare-ups. Nobody that lives with chronic pain willingly want to ignite more pain. Many CRPS warriors report a fear of movement that can worsen symptoms and increase disability

Metathesiophobia, or the fear of change. We fear change, again because of the unknown element that change brings. What if my CRPS flares up? What if I cannot handle the pain? What if I cannot accomplish this thing because of my CRPS? What if...

Often when we live in this type of fear, it becomes easier to just avoid life in the hopes that we rather not aggravate our CRPS. It is exhausting enough to live with CRPS, that we often feel that we do not have the energy to hold onto life. Yet nothing worthwhile has ever been accomplished without putting yourself out there, jumping into the unknown (knowing what you know). So what if...my fears are unsubstantiated or irrational and I actually achieve what I thought would never again be possible? Isn't that in itself worth a try?

Pain can create a barrier in life...but it can also become a motivator if you allow it. Yes, it might not be easy, and I might not feel like it at times (or ever), but I owe it to myself to try. I may never be able to do some of the things that I used to - that is something that I have to deal with. I may never be able to live without pain again - that is something that I have to accept. But I will never know what I am able to accomplish, in spite of my pain, if I let fear dictate my life.

I still have a choice of being part of this life, or just accepting my fate and give up. And this is a conscious decision that I have to make every day. And this decision starts with my choice of what I am going to do with my fear. If I decide to allow my fear to consume me, I cannot expect to overcome any physical, mental or emotional challenges that pain my bring. However, if I decide to say no to my fear, to live every day, one moment, one breath at a time, to accept the bad with the good, and not live in the past, then I have the ability to create hope within myself to say yes to life...no matter how painful it may be.

One of the greatest feelings that I experienced when I was still hiking and kloofing was the sense of accomplishment afterwards. Knowing that the pain and exhaustion that I experienced during the hike was worth it. Looking out from the top of the mountain, enjoying that incredible view and that peace and tranquillity that nature brings, made all the pain and battles to get there seem like a distant memory, a necessary discomfort to achieve an amazing outcome. 

Conquering my fear does not mean that I deny my pain, or that I blind myself to my condition. It simply means that I refuse to become a slave to fear. Conquering fear comes in various forms. In practice it may mean that today it might be working with the band saw, despite fearing flare-ups or how my hand is going to react on the strain of holding the wood straight, overdoing it with fine motor skills or the possibility of injuring myself in the process. Tomorrow it may be the fear of just being able to get out of bed, being able to grip something in my hand without dropping it or experiencing more pain, after pushing my limits today. Fear comes in many forms. Fearing what the future holds, what my condition will be tomorrow, next week, next year or in ten years from now. Fearing that CRPS will spread to other areas of my body. Fearing what I may or may not be able to do as time goes by.

I have read the other day of a CRPS warrior that recently got the diagnosis that her CRPS spread to her internal organs. Others have lost limbs due top CRPS. While others gave up on life and tried suicide because they just could not live with this disease any more. Whatever our fears, we all have them. One thing however that I have thought about a lot while contemplating the definition of fear, is something that might sound like a cliché. It is something that Franklin D. Roosevelt said during his 1933 inaugural address: "There is nothing to Fear but Fear Itself".

Fear in itself can become greater than any external threat or possible flare-up or possible extreme outcome of CRPS, as fear can become our primary obstacle to progress and success. When you live in fear, you close yourself off from all and any possible blessings and positive influences in your life. If I continue to live in fear of what CRPS may or not do to me, of what I may or may not be able to do tomorrow or the day after, or whether it is spreading or not, I will continue to close myself off from living life to the fullest, as far as I possibly can. I will prevent myself from conquering things that may have become obstacles and challenges in my life due to CRPS. I will eventually stop living.

Fear cannot be my future. If I want to live a more fulfilling life, despite this disease, then I cannot live by fear. There is difference between living in fear, and living responsibly. Of course I need to be responsible in whatever I do. That is when I need to use my fear as a motivator to 1. prove my own fears wrong, and 2. to achieve progress and success. One day, one breath at a time. Today a win may be helping my kids to build something special for their mom, tomorrow my win may be to be able to get out of bed, open my hand and pick up my cup of coffee. A win may not always be wow and extraordinary when you have CRPS, but a win is a win and that is awesome in itself. You see how I can see the same scenario either as a fear or a win? It is all about perception.

Living in fear causes extra stress. As CRPS warriors often exhibit heightened levels of anxiety and depression, fear may directly and indirectly lead to flare-ups. In my own life I have experienced that the more I protect and hide my hand out of fear that people may bump into it or I my hit it, the tenser I get, and the easier that tension lead to flare-ups. And as Murphy’s Law would have it, I would often bump it, the more I am trying to avoid bumping it. As affirmed before, CRPS is not a mental illness, however fear and my physical and emotional response to that fear definitely have an effect on my condition, how it presents and how I respond to CRPS. If my fear consumes me, it will have a negative impact on my CRPS, but if I overcome that fear or channel that fear and use it as a motivator, I am more likely to achieve goals that I otherwise might not have been able to.

Unfortunately there is no quick fix or solution for dealing with fear, and for people that have struggled with fear their whole life due to their circumstances or the type of personality that they have, it may never be easy to let go of their fears. NOT easy....BUT not impossible.

There is a saying that goes: "You become what you feed your mind". If I tell myself often enough and long enough that I cannot accomplish something because I have CRPS...I will eventually believe it and I won't even try. BUT...if I tell myself every day that I am going to attempt something and that I will take the smallest achievement as a win on which I can build my confidence, strength and abilities, before long, I will have achieved much more than I initially set out to achieve. Never sell yourself short because of fear. I would not have been where I am today, if I had given in to my fears after being diagnosed. Yes, I still have my bad flare-up days, I still cannot do a lot of stuff that I used to - either at all or in the way I used to - I still get anxious when I challenge myself or do something which I know will increase my pain for the next day or two or three. However...I deal with that when I have to. For today, if I am able to achieve something that I were not able to do yesterday, then that is a major win. If I need to rest tomorrow, then so be it. It does not mean that I am lazy, simply that I am rewarding my body by looking after it and listening to it, for the win that I had the day before. It is all about perspective.

Michael J Fox put is so well when he spoke about his struggle with Parkinson’s: "You deal with the condition, and you deal with people's perception of the condition. It was easy for me to tune in to the way other people were looking into my eyes and seeing their own fear reflected back. I'd assure them that 'I'm doing great' — because I was. After a while, the disconnect between the way I felt and the dread people were projecting just seemed, you know, funny."

When fear propels into anxiety...

There will be times when fear becomes unavoidable and ultimately ends in anxiety attacks. You will remember that earlier in my blog I spoke about getting anxiety attacks when I entered a certain store, and how I had to learn to deal with this when it happened. Anxiety attacks are horrible, especially when this was never a problem before. So how can I approach this and get my control back, before it leads to more harmful situations? By grounding myself. There are different techniques that one can practice, but it basically come down to this...breaking the fear cycle, by calming oneself and regaining control of you actions and emotions and surroundings. To deal with this, I practice mindfulness, which I spoke about in Chapter 19. Another way of dealing with this is by following these tips:

1. Take a few seconds to look around you
2. Find 5 things that you can see
3. Find 4 things that you can touch
4. Find 3 things that you can hear
5. Find 2 things that you can smell
6. Find 1 thing that you can taste

By doing this you are starting to ground yourself, when you feel that you have lost all control of your surroundings. You are brining yourself back to a safe and calm space where you can regain control of your emotions.

Medical gaslighting

A term that was unknown to me until recently when some CRPS warriors shared their experiences on this. I have known about this practice, but I never knew that there was a formal term for this called Medical gaslighting. But what is it?

Medical gaslighting is term used to describe doctors or medical practitioners who wrongly deny a patient's illness entirely, for example wrongly telling patients that they are not really sick, or blame a patient's physical illness or symptoms on psychological factors. These healthcare providers will often refuse to order labs or imaging, even if your symptoms warrant a closer look. This often leads to a misdiagnosis which in turn lead to delayed or wrong treatment. Another form of medical gaslighting is rude or condescending behaviour on the part of the healthcare provider.

In the technological and advanced age that we are living in, it is hard to believe that these type of healthcare providers still exist. Martin Luther King Jnr said, "Nothing in all the world is more dangerous than sincere ignorance and conscientious stupidity". Knowing that something like CRPS has been diagnosed a hundred years ago, or even not knowing and refusing to seek assistance from other colleagues in your profession, while still refusing to see and acknowledge the symptoms and the disease itself, is to live in total ignorance and conscientious stupidity.

Knowledge does not start when I open my mouth, nor does it start when I read or study a book. True knowledge is gained when I start to truly listen, without preconceived ideas, in order to gain a greater understanding.

Since my diagnosis I have been blessed to have had healthcare providers that knows about CRPS. In certain cases, they are well educated in CRPS, in other instances they have limited knowledge but are willing to learn. And in cases where I had healthcare providers that have not heard of the disease before, they were honest about it, and willing to learn and listen to gain some understanding. That is saying a lot in a country where very little is known or heard of the disease. Which makes it even worse when you hear of Medical Gaslighting in 1st world countries where you find Clinics and institutes that specializes in treating this disease. How can it be that despite growth in the medical field, you still find healthcare providers that refuse to listen to understand and just blatantly deny that which they do not understand and do not know. Perhaps it is a matter of "ignorance is bliss", perhaps it is stubbornness or perhaps it is a matter of having seen too many patients that tried to mislead the medical profession by claiming to be ill when they were not. Whatever the reason(s) are, one cannot refuse to see the truth, simply because of one or two patients that may have played the system. You cannot leave those who truly suffer and need help out in the cold, because of what you have experienced or what you do not understand.

The specialist that initially diagnosed me (I have shared this before) told me once that I am in a better position to explain CRPS and what it feels like and how it affects me, than he will ever be. This does not make me a specialist in the field, however it does make me an expert in my own body and someone worth listening to. And yes, expert does not mean All-knowing or having the right to be condescending. It does mean that I have personal knowledge and experience that are valuable for those in the medical field to search for answers, treatments and a possible cure.

Holly Teichholtz, head of communications at the Fox Foundation said the following of Michael J Fox: "His message is so simple, it gets forgotten: The people living with the disease are the experts,".

Neither the healthcare provider, nor myself, have the luxury of being condescending towards one another. Treating other humans with decency and respect is a basic human value - regardless of whether I am a doctor that has studied for many years or a patient that have to live in this living hell each and every moment of every day. The only way to look for a solution is to do it in partnership with each other. As much as the healthcare provider need us to trust them, we also need them to trust us.

Follow-up on Counsel of Medical Schemes outcome

According to them they have investigated my case, and although they "understand" my case and my plea, and although they have "empathy" for me and other CRPS warriors, they denied my request as the medical aid is adhering to the "minimum" prescribed benefit...which in layman’s terms mean that they do not have to do more than that or even have to commit to reviewing it. It is things like this that create the image that CRPS is not chronic enough for medical aids to acknowledge it as being the chronic disease that it is. I have 30 days to appeal this, which I will be doing. I have contacted the legal counsel of Rare Diseases SA for advise on this matter and will report back on the outcome.

May 2024 be a blessed and fairly pain free year for all.