I thought that it might be a good idea to include some insight into the experiences of those who lives close to someone with CRPS. So I have decided to ask Teresa if she would be willing to share something of what she experience(d) with my diagnosis and how it affected life in the Ritter household. At first she was reluctant as she is a very private person, that do not always want to share this stuff, but she eventually agreed. And for that I am very grateful, as this was also a eye opener for myself.
My wife's perspective - Teresa's story
I remember that I was asked by the specialist to join JJ in the next visit, where he wanted to discuss the way forward regarding JJ's neck. The specialist took JJ's hand, looked at it and then said that the only thing that makes sense to him, regarding the hand itself, is CRPS, but that he wants to send JJ for tests for confirmation. I have never heard of CRPS before, so when we got home, that was the first thing that I did - I googled CRPS. I remember the first result that came up was "CRPS, also known as Suicide Disease". I was shocked and afraid. It scared me and it brought along all this uncertainty of what may be lying ahead for us.
My observation of what JJ experience on a daily basis
He has his good days, and his bad days...and sometimes his very bad days. Often more bad than good. He cannot do everything that he used to and that frustrates him. He has immense pain and burning and he is constantly/permanently tired. He has closed himself off to the world and does not talk very much anymore.
JJ's relationship with our children
JJ would at times be short tempered due to what CRPS is doing, and it is for that reason that he would rather withdraw himself and leave me to deal with the kids and to discipline them. I think that he is afraid that he will lose it and come down too hard on them.
How did CRPS change him?
He used to laugh a lot and tease the kids a lot. In the last two years he has become very quiet and do not interact much with us or with other people. He would rather be consumed in his own world and thoughts.
Our Social life?
We do not have much of a social life anymore. We do not really have friends anymore, and those that we do have, we do not see or visit with anymore. JJ used to be an outdoors person, but nowadays he prefers to stay home, away from people, where he keeps himself busy outside or in the garage/workshop.
What frustrates me the most about CRPS?
The fact that the medical world over the years have become so advanced, but that they cannot do anything for him. That there is still no cure for CRPS and still more questions than answers. Also the fact that it feels, that because of this, he is being used/treated like a lab rat.
Do I think there is hope for CRPS warriors?
I try to stay positive and I really pray that there will be a breakthrough. But at the same time it makes me really happy to see how JJ is able to help so many other people despite the disease. I just wish that there would be someone that would be able to help him as well. I feel helpless and I know too little of the disease. We learn as we go on.
How can we create more awareness of the disease?
People need to talk about it. They need to tell their stories and experiences - both the good and the bad. It does not have to be a "lonely" disease. The more people talk about it, and the more people really listen, the more the world will become aware of CRPS, and hopefully start to understand this disease and find a cure.
What are the 3 most important things about CRPS that people need to know and understand?
1. Although you cannot see it, it is REAL!
2. People with CRPS have unmeasurable pain that you cannot even begin to understand
3. People with CRPS have both good days and bad days. Good days does not mean that they do not have pain, just that life is a little bit easier sometimes.
What are the 3 most important things that people can do to support or help people with CRPS?
1. It is a learning process, so be patient.
2. Try to understand from the person's point of view and just be there for them
3. Listen, support and do not judge.
Please do not think that the person is faking it or just seeking sympathy. Although we cannot see the physical pain, it is REAL! I can testify to that from my own personal experience living with SLE (lupus) for so many years.
My biggest fear/concern
That it becomes worse and that he will not be able to cope with it anymore. Also that he will withdraw himself completely from us and will not feel a part of us, his family, anymore - the disassociation that he has spoken of before. There is also the fear that he may become paralyzed as a result of his neck that cannot be operated right now.
(Teresa Ritter)
Your Legacy
When I asked my wife to share some of what she experience, I did not expect this. Yes, I knew some of it, but to listen to her fears and to see through her eyes made me realise the enormity of the burden that me having CRPS and going through what I am going through has on her and my kids. I remember two weeks ago, my kids were swimming, and I was not in the mood for swimming that day. So afterwards when I went to help Liam to put on dry clothes, Liam looked at me and said, "Daddy, why didn't you swim with us? I wanted you to swim with us.". A knife straight to a father’s heart. But Liam was not the one throwing it...I was...throwing it at myself. An opportunity, a memory, that I missed, because I was closed off - drawn into myself. Hearing Teresa saying what she is saying, just drives that home so much more..and I know it have to change.
Nothing brings you as close to re-evaluating your life and asking yourself what you are leaving behind when you die, as being confronted with an incurable disease or when hardship or tragedy strikes. It is strange, when I was doing camps, I used to ask this question a lot, "What legacy do you leave behind when you die one day?", and I used this to challenge campers to think about the impact that they make in this world, on the environment and on the people around them. We all leave footprints in this world. Whether we are connected to someone for life, or only for a season, or just in passing by - we all leave a mark, a footprint in that person's life. And not only in that person, but in the world around us. What we do in this life, and how we interact with those around us, and how we manage what God has given us, determines the legacy that we leave behind. Not only what we would be remembered for, but what impacted the world around us and what our children will live by. And in our children's lives, these legacies are often created by the memories that we have built with them.
Lately I have been asking myself this a lot. What legacy do I leave behind? For my wife, for my kids, for people that I have met throughout my life - in this world? And I am being honest when I say, that I do not know. I thought I did. When I was in ministry, I was sure that I did. Everything in my life was calculated. I was doing what I was called for. My life had found its purpose....And then Life happened, and it happened again, and again....over and over...and suddenly I was not so sure anymore. I have changed direction so many times that I started questioning whether my life up to that point had any meaning at all. Every person has his/her breaking point, and often we try so hard to hold on to what we think gives purpose or where we need to be, that we do not see that our purpose has shifted. We try to hold on to what is familiar, comfortable, to what we are used to, to what we know. Often the challenge is not to change direction, but to still leave a firm legacy wherever you go.
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When the hardships of life hit us, especially when it takes its toll on your health and physical and mental abilities, you often wonder what legacy you are still able to leave behind. It is easy to become depressed and to feel that you have nothing to offer this world, or that you have outlived your value. But it can't be any further from the truth, because we all have the ability to leave a lasting legacy that will encourage and motivate others. Perhaps it may not be as bold and loud as Albert Einstein or Martin Luther King or Mother Teresa. Perhaps it does not have life altering scientific breakthroughs like Isaac Newton (three basic laws of motion and the theory of universal gravity - 1687), Louis Pasteur (1st vaccine against human rabies - 1885) or James Watson and Francis Crick (DNA - 1953). But then again that does not always have to be. Yes, their legacies have made a huge impact in the world, in how we think and how we do and understand things. But when you think about it, for them to be able to leave behind these legacies, there were people that left behind legacies in their own lives, that shaped and formed them into the people that they have become, so that they could leave behind the legacies that they did. To me those people, the often unnamed people that worked in the shadows, left behind the greatest legacies. If these people have not been born, their lives and work would not have existed.
The legacy that you leave behind, no matter how insignificant it may seem, have the ability to change the world. So what legacy do you leave behind? When people look at your life, what do they see? I am often reminded of Robin Williams, the late actor. Few people knew at the time that he was struggling with depression. Because he was a comedian, he had mastered the craft of living behind a mask - until he reached his breaking point and committed suicide. An autopsy revealed that he was suffering from Lewy body dementia, a disease that not Robin nor his wife was aware of. Robin's death was a great loss to this world, but the legacy that he left behind was even greater - not only the legacy after his death, but also while he was still living.
The two quotes from Robin Williams that I remember well is this:
2. “No matter what people tell you, words and ideas can change the world.”
Him committing suicide, in no way diminished the truth that he lived by. And even after his death his legacy still inspires people. How will your legacy inspire others? Your Legacy do not need to be pain and misery. Pain should stay what it was meant to be, the body's response to danger, your body's alarm - a construct. Pain was never meant to define you, or to determine what legacy you leave behind. Rather use pain as a motivational tool to build the Legacy that you really want to leave behind. I said in the beginning, at this point I do not know what my legacy will be, but I hope that my fight against CRPS may bring a legacy of hope to others that struggle with it. But even more than that, I hope that I may grab every opportunity from here on forward to build the type of memories with my wife and children, that my Legacy for them will be created from. Legacy is not about how much physical possessions we leave behind. That may be part of it, but Legacy is about how we are remembered and what we leave behind to encourage and uplift others to greater things. Also, the Legacy that we leave behind, does not start the day that we die. No, it started with the first breath that we drew when we were born, and every day thereafter. Every moment of every day I need to be building up the legacy that I want to leave behind.
Rhizotomy no 2
So I went for my 6 months’ check-up the other day, and instead of seeing my regular specialist, I saw the surgeon that did the 1st Rhizotomy. As the 1st Rhizotomy had no effect on my neck pain, he feels that there was too much going on in my body at the time. With the Rhizotomy not really given a chance to work, I went for the knee and hand operation, which led to complications and eventually CRPS. The next two years have been a struggle to bring down my body's sensitivity to a point where further therapy on my neck could be considered. This time around he will be going in higher than before and start at c2 and go all the way down to c7 - much further than before. His hope is that 1. this will ease the neck pain, but also 2. sort of help with the stimulation of the brain to help with its restructuring - which will be a good thing for the CRPS.
He did however say that they still know too little about CRPS, so the danger of CRPS flaring up is still there. He therefor does not make any promises or guarantees towards any positive outcome on the CRPS side of things. Unfortunately, we won't know if we do not try. Should the rhizotomy again bring no relief, they will have to dig deeper than what they know about my neck, and see if there is an underlying condition that prevents the rhizotomy from having the desired effect. At this point, they would still prefer not to do the operation yet...which I am grateful for. So I am scheduled for 15 March 2023 for my 2nd rhizotomy. Meanwhile I am testing some other medication for the CRPS as well to see how I respond on it.
Wendy has also sent me some info on DBT Skills, so I am reading up on that at the moment, so perhaps in the next chapter we can talk about that a bit. I think with my loss of emotion, the "Emotion regulation" may be a challenge, but let’s see how it goes. I have managed to bring my sensitivity down, so now I need to find my way back home - I need to find my way back to my wife and kids...and to the world around me. If that means going of Cymgyn...well then it might be a chance that I am willing to take (knowing that I will not go back onto it again). But let's take it one day at a time.
If Today Was Your Last Day
My best friend gave me the best advice
He said, "Each day's a gift and not a given right"
Leave no stone unturned, leave your fears behind
And try to take the path less traveled by
That first step you take is the longest stride
(What if? What if?)
If today was your last day
And tomorrow was too late
Could you say goodbye to yesterday? (Would you? Would you?)
Would you live each moment like your last?
Leave old pictures in the past?
Donate every dime you have? (Would you? Would you?)
If today was your last day
(What if? What if?)
(If today was your last day)
Against the grain should be a way of life
What's worth the prize is always worth the fight
Every second counts 'cause there's no second try
So live it like you're never livin' twice
Don't take the free ride in your own life
(What if? What if?)
If today was your last day
And tomorrow was too late
Could you say goodbye to yesterday? (Would you? Would you?)
Would you live each moment like your last?
Leave old pictures in the past?
Donate every dime you have? (Would you? Would you?)
And would you call old friends you never see?
Reminisce old memories?
Would you forgive your enemies? (Could you? Could you?)
And would you find that one you're dreamin' of?
Swear up and down to God above
That you'd finally fall in love? (Finally fall in love)
If today was your last day
If today was your last day
Would you make your mark
By mending a broken heart?
You know it's never too late
To shoot for the stars
Regardless of who you are
So do whatever it takes
'Cause you can't rewind
A moment in this life
Let nothin' stand in your way
'Cause the hands of time
Are never on your side
If today was your last day
And tomorrow was too late
Could you say goodbye to yesterday?
Would you live each moment like your last?
Leave old pictures in the past?
Donate every dime you have? (Would you? Would you?)
And would you call old friends you never see?
Reminisce old memories?
Would you forgive your enemies? (Could you? Could you?)
And would you find that one you're dreamin' of?
Swear up and down to God above
That you'd finally fall in love? (What if? What if?)
If today was your last day
(Song by Nickleback)
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