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!