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.