Roughly four weeks ago I found out that I inherited a degenerative gene in my family called Spinocerebellar ataxia type 3 (SCA 3), also known as Machado-Joseph disease (MJD). Basically it is a progressive decline in muscle control; losing coordination, balance, speech, swallowing, eventually requiring wheelchair assistance and the support of someone to help you with everything. There is no cure for this disease.
The scientific outlook for my life isn’t all too amazing. I live a reasonably active lifestyle; I’m a nurse in a busy emergency department, a volunteer firefighter with the CFA, I play the guitar, I enjoy hiking, riding, swimming; I’ll give anything that’s outdoorsy a go. To think that one day I may not be able to do any of these things upsets me greatly, that one day I may struggle to even walk in a straight line. My Mum has SCA 3, as well as two of her siblings and so did their Mum. I’ve watched and helped my Mum progress through the disease.
When I received this news I was shocked and devastated. I have many dreams that I could now almost deem as unreachable. Why would God let this happen to me? Why didn’t he answer the prayers of my parents? Haven’t I already been through enough?
So to receive these results came with great disappointment and heartache, well it wasn’t my results that first caught me out. Last year, my younger sister had genetic testing done to see if she carried the gene and when her results came back as positive I was quite upset. I had always held onto my faith that neither I nor my sisters would have the gene. My parents prayed over us from a young age. They prayed and believed that this gene would not be passed on; I had prayed and I had also had people pray for me that I would not have this gene. If God is good then why has he let this happen, why has he not healed me?
I don’t believe in a god who is distant, sitting up in heaven, ruling down saying do good or you’ll get what’s coming to you. I believe in a God who loves, who heals, who cares for me, who would never want to harm me. And I have come to these conclusions…
Why does God let bad things happen?
Why didn’t God create a world free of suffering, tragedy, evil and death? But that’s exactly what God created! God created a world that was free of suffering, tragedy, evil and death; you can read about it in Genesis 1. God saw all that he had made, and it was very good (1). God wanted us to experience love and love always require a choice so God gave us free will. With that free will humans rejected God and that caused the introduction of evil into the world (2). God is not the creator of evil and suffering.
Why doesn’t God heal me?
I’ve heard of people being told they haven’t been healed because they don’t have enough faith or they have some hurt or sin that they need to deal with. But healing isn’t always the path God has planned. Sometimes God allows suffering as it can teach us things that we would never get out of a book or seminar. He uses it to strengthen and change us. Your pain has a purpose. God doesn’t say you might have struggles, he says “on earth you will have many trials and sorrows” but he also says to take heart as He has overcome the world (3). The bible is full of stories about trials but in those trials is God’s grace and mercy. He tell us not to be afraid or discouraged because he goes before us, is always with us and will never leave us (4). God causes everything to work together for the good of those who love him (5) and we cannot begin to imagine what he has prepared for them (6).
Struggles are part of this life but God gives me hope for an eternity free of suffering and pain. I know that there are going to be hard times a head, even now, most days I’m ok but some days the reality that my time to do things may be short makes me upset. One day I may not be able to play the guitar or even walk in a straight line. All the things that I find happiness in now, one day I may not be able to do any of them. But I do know that God has a bigger plan.
Heaven is my retirement plan!
But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefor do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own (Matthew 6:33-34 NIV).
(1) God saw all that he had made, and it was very good (Genesis 1:31 NIV).
(2) …’You must not eat fruit from the tree that is in the middle of the garden, and you must not touch it, or you will die’. “You will not certainly die,” the serpent said to the women. “For God knows that when you eat of it your eyes will be opened, and you will be like God, knowing good and evil.” …she took some and ate it. She also gave some to her husband… (Genesis 3:1-7 NIV)
(3) “on earth you will have many trails and sorrows. But take heart, because I have overcome the world.” (John 16:33 NLT).
(4) The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged (Deuteronony 31:8 NIV).
(5) And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them (Romans 8:28 NLT)
(6) No eye has seen, no ear has heard, and no mind has imagined what God has prepared for those who love him (1 Corinthians 2:9 NLT)
COMMENTS FROM ORIGINAL POST
Genevieve Gibbona 3/4/2017 04:05:23 am
Wow this is so profound Bec. I am blown away by your strength and how you refuse to let this diagnosis bring you down and stop you from being the best version of yourself that you can be for as long as you can be! I wish you the best of luck, I know you will remain strong and continue to live life the way you always dreamt of!
Steven Macdonald 3/4/2017 05:37:17 am
Hi Bec, this uncle Steve I know how upsetting it is for you because I have the same gene. Love and support you
Deb Mitchell 3/4/2017 11:39:10 pm
Bec – this is incredible. Your testimony is so powerful. And your faith is so inspiring. He loves you soooooo much!! We do too. You’re awesome. Super blessed to have you in my life… xxx
Ellie Webster 4/4/2017 02:32:17 am
So proud of you for posting this lovely. And I love seeing how your faith remains so strong ❤
Fanny 5/4/2017 06:23:38 am
Hi Bec :
Is an encouragement to read your post . God is good , all creations are good before sin came . Yes , the earth is not our eteranl home , we desire a better place -heaven , no pain , no tears and with Jesus forever . The one who loved us so much that he die for our sinned , to paid our ransom . This earth is not perfect , is not fair and the things are not set right . But God will restore one day . Be strong and courageous , use your life to encourage the others ; to inspire the others ; to testify ” Jesus Christ’s amazing love ” to the others .
My husband also have SCA 6 and we had been go through the challenges , but thank you Jesus for he walked with us .
Lily Somerford 5/4/2017 09:29:55 pm
Bec, I am so sorry that you and Nom’s have been so far been diagnosed with this horrid disease alongside your wonderful Mum. And I pray that one day, they DO find a cure. Keep positive, and I am thinking of you and your family. 😔
Regi McKinlay 6/4/2017 01:11:32 am
Wow, Bec. I have just read your blog and I am so very touched and moved by your faith and outlook on life. Thank you for sharing this with us. My heart aches for you and at the same time admires your honesty and courage. Big hug!
Kim Mac Donald 14/4/2017 03:06:21 am
Hi beautiful I am blown away by your wisdom and love for God. I know it’s very hard what you are going through. I love you and am here for you. I am so sorry you have it. When mum come down with it the doctors didn’t know much about the desease. We had no idea it could be passed on. It was not until Julie and Robert started showing signs of it what we relised. So when your mum and dad had you girls we had no idea she had it. It breaks my heart to watch my 3 siblings struggle through this and my mum. Now two of you guys too. It’s easy to feel over whelmed by it. But yes you are right God will never leave you nor will he forsake you. Ps 23 though I walk through the shadow of death I will fear no evil for You are with me. Bec this is a dark hour for you but He promises to walk you through it not camp in it. He has a deferent plan for you, we just don’t know what that going to look like. Don’t give up believing for His healing. This side or in heaven you are a winner a victoras winner. I love you very much. Keep up with the blog it’s great. Love you Aunty Kim