I was sitting at the piano on a big stage in a large concert venue, something I had done many times before, but this time my hands were heavy. My fingers weren’t able to play the notes that they should have been playing and I knew that something wasn’t right. Some months later, I was diagnosed with Motor Neurone Disease, an incurable condition in which all my muscles would stop working and eventually lead to my death.
I quickly progressed to using a wheelchair and had to give up the job I loved, teaching kids to play music. Within a few months, I was totally dependent on my wife to feed me, get me dressed and take me places. Within a year, I had lost the ability to eat and now I am losing my ability to speak. I use a ventilator to breathe, am fed by a tube in my stomach and spend my days in a specially adapted chair. I am very thankful that I have an eye-tracking device so that I can still use a computer and turn on the TV. When my voice gives up, I can use my eyes to slowly type a few phrases which my mechanical voice speaks out loud. It would be easy to look at me and feel that there was no purpose to my life, but that’s not what God says.
Here are four things that God is teaching me. I need to remind myself of them constantly and though I sometimes forget, I know that he never forgets me.
I am precious
Isaiah 43 verse 4 says, ‘You are precious and honoured in my sight, and … I love you.’
I need to remind myself continually that God loves me for who I am not what I can do. The Lord has chosen me to be his treasured possession (Deut. 14:2) and I am still precious to him despite my illness. He knows what he is doing and he is good.
If you are feeling that you have no purpose, the Lord wants to tell you differently. He wants you to know that your purpose is being his child, not what you are able to do.
I am blessed
When I first received the diagnosis, there was a time of real sorrow and sadness as I mourned the things that I knew would soon be taken away from me. Still some days are hard and I feel helpless and upset that I am a burden on others. Yet, God promises that if I lean on him and trust him, he will give me the strength that I need.
I need to ask God daily to help me remember my blessings. I have so much to be thankful for. Each day is a gift to enjoy being with my family, watching the birds and the garden grow. The Bible says that every good and perfect gift comes from God (James 1:17) and I have been able to find much pleasure in the everyday things around me that I had not noticed before.
When you have a serious illness your world becomes much smaller, but in God’s grace even that can be a blessing. God has opened my eyes to see the little things in life and I can pray about them. I have time to see God answering those prayers and to see how he is interested in the tiny little details of our lives. Sometimes, living in the moment is a real privilege. I don’t need to worry about earning money or running a house because I have to trust that God will give others the strength and wisdom to do that. I know I can trust God in the big things because I can see him working in the little things.
I am useful
It has been very hard not being able to get to church services and have fellowship with people. Zoom and YouTube are great but they aren’t the real thing. Often, although I know people pray for me and love me from afar, it can feel very lonely away from the church. Yet, wherever I am, I am still part of God’s family. I really value people visiting and telling me what God is doing in their lives and in the church. It is good to be able to serve the Lord by praying for them and with them.
I can encourage others just by keeping going and letting them see that the Lord is helping me. I am learning that you don’t always need to be cheerful and smiling to be an encourager. Just sharing your life and your struggles and letting others see how God sustains you even in the midst of pain and darkness can be an encouragement. God is showing me that Christian fellowship is about sharing your life with others, the ups, the downs and the bits in between. That fellowship is precious and points to Heaven.
Each day I ask God to help me to be content and to make life as easy as possible for those around me. There are times when I struggle with not being fully involved in family life, but I know life needs to go on around me. There are meals to cook and school runs to do, and I can be useful by making those things as easy as possible. I am still a husband and dad and I pray that God will make me the best one I can be.
I am in daily contact with people who are caring for me. I can love them and pray for them. It has been hard for us as a family to open our home and share our lives with strangers, but it has also been a joy and we have seen God working through this.
I am being made new
I have learned that God is bigger than all of my infirmities. He is good and his ways are perfect. I don’t know why he is keeping me alive nor for how long, but whilst he does I know that he will give me the strength to shine for him. As my wife reminds me, even a weak and tiny flame can bring much light to a darkened room.
God doesn’t see my body as decaying. He is preparing me for Heaven. My body is being changed for good and when God sees me as ready, he will take me to be with him, forever. I know that I am more than my illness, I am a child of God and I am loved.
Some days I am scared and I’m sure there will be dark days ahead but Psalm 23 says, ‘Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me, your rod and your staff they comfort me.’ I know that God will give me the strength to keep going until he calls me home. I am learning not to worry about tomorrow, but to be thankful and trust him for each day. He knows what is coming and he will help me when it comes.
Let me encourage you, in whatever situation you find yourself, to keep going. Remember that you are precious to the Lord and he will never leave you nor forsake you.