Three weeks ago I had major limb reconstruction surgery. I was diagnosed five years ago with a degenerative condition on both knees which needed to be corrected by surgery, but I managed to put the operation off until now. I get very anxious around hospitals and with lots of ongoing health issues with my four children I just didn’t want to do it. In addition, I love what I do and wanted to make sure XLP was in good shape.
On 10th October I went into theatre just before 9.00am and came back onto the ward at 3.30pm. We were told the operation had gone well. The Fibula and Tibia in my left leg had been completely severed, along with some tissue and muscle. I had 12 pins going into my leg – six of which go all the way through the leg, and six of which are screwed into the bone. All of them are attached to three metal rings around my leg and there are 12 struts linking the rings together (which had to be moved slowly over six days). I reacted very badly to the anaesthetic and morphine and it took four days to get the pain and the reactions to medication under control. Six days later I was sent home in an ambulance on a stretcher. I don’t think any of us were prepared for my arrival (it was suddenly brought forward three days) and very quickly realised we needed extra stair-rails and grab rails, as well as a more supportive chair. After a week, and with some help of kind friends, we had all these things in place.
Coming to terms with the impact my frame has on our lives at times feels overwhelming, and it has been an emotional rollercoaster. We have good hours and bad hours. In the lead-up to the operation I was speaking lots about courage as I knew I would need lots of it to see me through. My previous images of courage had been the heroic acts of those on the battlefields, the Hollywood image of the boxer who refuses to go down and ends up winning in the last round. However in my study I found this quote which has kept me going through the last three weeks:
“Courage does not always roar. Sometimes it’s the quiet voice at the end of the day saying, I will try again tomorrow.” – Mary Anne Radmacher
I am starting to realise that courage is about allowing yourself to be vulnerable. Brene Brown says, “courage is showing up and letting ourselves be seen”. I guess the Cross is the ultimate example of this. I have gone from being a very independent person with high standards of myself to realising that I can’t reach those standards and more than ever I need to have the courage to allow others to do things for me, which I can find frustrating. For the first couple of weeks after the operation I needed help with everything, even the simplest task. One of my worst moments was trying to get up the stairs for the first time at home. My stairs are so different to those in the hospital where I was taught how to tackle them with crutches. I was totally overwhelmed by the time I reached the top, but each day I try again, to be honest often going up on my backside (don’t tell the physio!). I have often heard in Christian circles that your identity is not in what you do but in who you are. This is an easy thing to say from a pulpit – often by many of us who have full time jobs – but much harder in reality. Many of us get a measure of worth, rightly or wrongly, from what we do. In my many years of XLP I have worked with enough young people who have been long term unemployed to see the effects of having no job at all. I don’t think it has to define your worth, but it does affect you.
I now have lots of physio, 13 different exercises to be done four times a day and lots of hospital appointments to get through every week. Twice a week my wife Diane does pin site care for me – this involves removing the dressings, cleaning the pin sites and putting new dressings on, all with sterile gauzes/gloves etc. This takes 45 minutes and helps to avoid infections; we have been told to expect around five infections during the next 6-12 months (which is the period of time I am currently expecting to have the frame on). We would love to have none!
I would love to be able to say I can feel God’s peace, but in reality most of the time so far I have been scared, especially when they couldn’t get the pain under control. I have however seen God in the faces of my friends and family who have seen me at my lowest moments and loved me. People who have cooked meals, given gifts, sent supportive texts and prayed for me when I struggled to pray for myself. I was also taken aback and inspired by the responses to the last blog I wrote, “When Faith Gets Shaken”. I had comments and emails from people who had been through so much more than I have, many on a journey with cancer themselves and having chemo or seeing loved ones go through some incredible challenges with amazing courage and dignity. It seems when we are honest and real it gives others the permission to do the same, and together we realise we are part of a community that doesn’t have all the answers but can take hold of each other’s’ hands to try again tomorrow. I hope if you are going through some big challenges, whether it be physically, spiritually, emotionally or relationally you might hear that quiet voice that says, “let’s try again tomorrow”.
This week in South Africa a film is being released about the story the amazing life of Nelson Mandela. I leave you with one of his amazing quotes:
“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers fear.”