I turned to the Lord in prayer: "Into your hands Lord. I can't deal with this, but You can. Please be my tower and strength." I knew that that was the one way I could get through this. God would make a way - perhaps not out of this hard place, but He would be with me, and carry me, through it all. I felt at peace. I never asked, 'Why me Lord?' I just thought that maybe, if it was someone else, they might not be able to carry this, but I had my faith to get me through, so why not me?
So now I'm on a path I never thought I'd ever be on. A path of chronic illness, an invisible disability of sorts. I didn't choose it, but here I am, so I had better go prepared. Our journeys through the galaxy of life are all so different. Some seem to sail along among the stars; others are battling against the forces of a black hole.
I had to set out on my new journey with a positive outlook, despite the negative life sentence thrust upon me. My family seem to take it the hardest, having done the research on each disease, and all the medications and their side effects, while I preferred the blissful state of ignorance. I was living by faith, feasting on the Word of God and trying to find out how this journey could be used for good - not just for me, but for others as well.
It wasn't long before I saw evidence of this 'good', as people around me were telling me that they were growing stronger in their faith because of my story. I was similarly encouraged by looking at others who suffered from far more serious afflictions than I did and was amazed at their strength and the beauty of their spirits. I was looking outward, not inward.
I then discovered the organisation Rare Diseases of South Africa and joined to learn about others with similar journeys. I learned about my own fighting spirit and was welcomed into a family of Rare Warriors whose journeys are an amazing story of trials and victories, triumphs, and tragedies. And now I have my own victory story to share. Apparently, the average lifespan for someone with SNIP and Fibrosis is five years, and guess what? I've made it to five years! God has my days numbered, and no disease is going to change that.
Not every day feels like a triumph. Levels of pain and abilities fluctuate moment to moment. One day I can make dinner, the next day I'm too tired to drag my oxygen cord after me to the bathroom. One day, out visiting the craft stalls, I can manage to walk among them by myself and enjoy my independence - the next visit I need a wheelchair and someone to push it. One moment I can happily be chatting to someone, free easy, fully engaged - the next my heart is pounding too fast, all my energy is sapped, and I can barely form a sentence. My husband and sons have recently banned me from walking alone in the garden as some days I can't seem to stay on my feet. After one particular fall I broke my elbow when I stepped off the path; another time I sprained my ankle while watering the plants. The 50 something me is now resigned to using a crutch for support or ankle braces. But at least I'm still standing.
These diseases have taught me to laugh - yup laugh - when things happen, and to find another way to look at life. Instead of saying, 'I have to be admitted to hospital for further testing', I say 'I get to sample hospital food for a few days to find my favourite dish and dessert'. Wink, wink. Or 'Some young doctor is going to get educated using his detective skills on me,' instead of 'I have to have exploratory surgery'. There's got to be some way of seeing the stars instead of only the darkness out there.
Life with a rare disease is difficult out in the world. I look at others who are worse off than me, and I marvel at how they navigate it all. Sure, when I go to a restaurant, I must sit near a plug socket so my oxygen concentrator can work after the battery has run flat. But hey, I get to go out! There are others with rare disease who don't have that privilege. You see, if I only look at my situation, I'll get all 'woe is me' and negative, but I choose to see it through the eyes of other Rare Warriors. Which is why it has been amazing learning about Rare Diseases and the different Warriors' stories.
I don't say 'Oh I'll never go hiking or boating again', I'd rather say, 'Wow, I was able to experience hiking, walking, sailing. I am blessed.' There are others who may never experience those simple pleasures.
There are days however, that I long to be able to do what I used to do, or to look how I used to looked (can't blame it all cortisone!), but if I sit too long at that watering hole, I'll end up drowning in it. So, I'll pause and throw a stone or two at some imaginary foe, shout into the abyss, maybe shed a tear or two, but I'll not sit down. I'll turn around and see those loved ones around me, see their needs and see how I can make them smile, encourage them, listen to them, pray for them. Those are things I CAN do.
Do I look far into the future? No, not too far. I take one day at a time. I plan to go canoeing sometime soon, although I know I won't be holding the paddles. But I'll be there! I'll be with my family. I'll be taking the photos. I plan to go to the beach. No, I can't go running into the sea and diving beneath the waves, but I will be sitting on the sand, or in a shallow rock pool, attached to my oxygen. I remind myself, it's a lot more than other Warriors will get to do. So yeah, I guess I choose to count my blessings, naming them one by one. At the end of the day, I don't say 'oh I never got to walk around the block, make a meal, sew a garment, go to a job....' I say, 'I got to see the sunset, read a book, chat to a friend, try a new flavour of tea....' Oh, and the muscle pains, cramps, nausea, headaches, chest pain, rashes - to name but a few of my constant companions - yeah they're there.... But they're not who I am. I am a Rare Warrior. One of many. One day my body will be made new. This present body is temporary. So, I'll not let my deteriorating body affect my spirit, but let my spirit rise up above its circumstance because Christ is my joy.
I hope that one day I will be able to do a 1km walk. Yeah, one kilometre. I used to do the 5km challenges, but on this new path, I'm aiming for 1, and who knows, maybe that will lead to 5km.
It wasn't easy making adaptations to living with a pipe up my nostrils and clinging to my face like an octopus. The worst was having to drag this 20m long pipe that connected me to the much-needed oxygen box, around the house. I tripped the family up around every corner, got it stuck under the doors and had it almost chewed up by my puppy. Many times, I would feel like a battery powered toy whose batteries were running flat, and my hubby would notice me fading fast. My stats would drop too low, in the 70's when they should be closer to 100, and then he would realize that the pipe had holes.
Everything I do, sitting in the pool, around the braai, driving in the car, visiting friends, going to a movie, all must be done with an oxygen machine. But I count my blessings because I CAN do these things. I was blessed with a portable oxygen machine. I am so grateful for the family and friends that I have. They have been so understanding and supportive. My hubby Peter is a rock. (pun intended, as Peter means rock) He works from home to take care of me and does meals and dishes too. I bet he didn't even think of this possibility when he promised to love me in sickness and in health 30 years ago. But this is the path our life as a couple has taken, and he has adjusted to it, like the Rare Warrior supporter that he is. My two sons, who are now young men aged 20 and 23, had to finish school and enter adult hood without much input from me. But that was then. I've improved over the years to where I can lovingly annoy them once again!
Two years ago, hubby got me a puppy. He has been an absolute joy in my life. When I have a bad night, he lies with me then next day. He gets me up to play Frisbee when I just want to stay in bed. He needs food and water, fun and treats. I need to take care of him, and that takes my eyes off me. I'm looking outward, to someone who needs me, and that keeps me going.
They're simple things - looking upward to God, outward to others, and counting my blessings - but they carry me through each day. Prayer and practising gratitude have helped me find hope and life, even though the loss and challenges. I'm so thankful for groups like Rare Diseases of South Africa who draw us together. I find great strength in knowing I'm not alone.
Copy. Credit: Leilanie Crofton-Ball