In the school of God’s grace (2)
In May 2008, my husband Arthur was diagnosed with a rare brain disease — progressive supranuclear palsy (PSP). The PSP Association funded a specialist nurse who is on call 24/7. Her help has been invaluable.
We lived in a tall, narrow town house with a lot of stairs. Our bedroom and bathroom were on the first floor and Arthur found it increasingly difficult to get up and down the stairs. Since having a bad fall, he had not been out of the house.
Stair lifts are not recommended for PSP patients and stairs are a serious threat, as patients fall over backwards. So we knew we had to move, but where would we find what we needed?
Along with others, we started to pray and just a few weeks later were told that a young city banker and his wife, in our church in Docklands, were being transferred to Singapore and were letting their apartment.
I went to see the apartment, which overlooks the Thames, opposite the old Greenwich Naval College. The whole complex had wheelchair access, and even a swimming pool with sauna and Jacuzzi, as well as a gym.
It was possible to take a wheelchair along the river walkway and there were several parks nearby. We were only able to afford this because our children were giving up their apartment. Our son would live with us and our daughter with friends. We were awed to see God’s plan come together.
This was to become a ‘valley of blessing’ as we kept our eyes on the Lord and not on what might lay ahead. A friend gave us a book entitled To love a stranger, written by a carer whose husband had PSP. At the front of the book is a quote from Andrew Murray:
I am here by God’s appointment,
In his keeping,
Under his training,
For his time.
Many times I have had cause to be thankful for what Corrie ten Boom wrote in one of her books. Her father used to tell her: ‘When you are about to go on a journey, you get your ticket as you board the train; and that is how God gives us his grace’. It comes as we need it — you can’t store it up. ‘He gives more grace’.
The worst may not happen, but even if it does, God will give us the grace for that. He has promised we will not be overwhelmed.
I have learnt that it is vitally important to live in the present. God’s grace is sufficient for today, but if I add what might happen tomorrow then it becomes overwhelming. If I find myself going off down that road, I quickly bring myself back to the present and thank God for his abundant grace and mercy to carry us through today.
We have some lovely people from the medical profession helping us and have shared with them the hope we have in Jesus. There was a TV documentary recently called A short stay in Switzerland, where a lady doctor with PSP had gone to Switzerland to end her life.
One of PSP’s symptoms is the growing inability to swallow. The medical profession deal with this by inserting a feeding line into the stomach. Our GP called me up one day to ask me if I realised Arthur’s illness was terminal. And would we like him to send someone from the local hospice to talk with us about resuscitation, etc.?
So, on the one hand, we have people committing suicide; and on the other hand, the medical profession trying to keep you alive at all costs! As Christians, we believe that neither of these approaches is right for us.
In the documentary Dr Turner was still walking with just a stick when she went into the clinic in Switzerland to die in front of her children. But Arthur’s disease is more advanced than that, although in January last year he was able to walk our daughter down the aisle using his U-step walker.
We believe God is good and we would miss out on so much if we were to take matters into our own hands. On the other hand, if Arthur were to be continually resuscitated and artificially fed it would only increase and prolong his suffering.
Nature has its own way of taking care of things. The consultant at the hospital told us that most PSP patients die of pneumonia, and, as a GP friend of ours said to Arthur, ‘Pneumonia is known in the profession as the old man’s friend’. We believe Arthur’s life is in God’s hands and for him ‘to be absent from the body is to be present with the Lord’.
Light in darkness
Arthur’s records were referred to the disability options team in Tower Hamlets, who have been so supportive. Our new GP was very helpful. He had done his training at the National Hospital for Neurology and it was he who put us in touch with St Joseph’s hospice. Arthur goes there every two or three months for a week’s respite.
At every turn God has met us. The Bible breaks our lives down into days. The Psalmist writes of the ‘days that are planned for me’. It has been awesome to see how God has planned the care we are to receive, step by step as we need it.
When I have mentioned to people how excellent the medical care is in Tower Hamlets, I have been told it is among the best in the country. This gives us confidence as we look to the future. We know God will continue to meet us and provide for us.
‘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’ (Psalm 23:6). I have stayed in Psalm 23 for many days, as I wrestled with Arthur’s diagnosis.
What does ‘the shadow of death’ mean? Yes, death is a valley we pass through, but it is not a pitch black valley. We only experience the shadow of death. For there to be shadow, there must be light, or at least some sunshine, in the valley.
The true darkness of death was experienced by Jesus on the cross and we only experience its shadow; Jesus has taken away the sting of death.
We needed to move from the flat again. Our concern was that Debbie was still paying a large sum every month towards our rent, when she needed to be saving for her upcoming wedding. The flat also did not meet Arthur’s needs, as it had at first.
Tower Hamlets held an open day for those in need of housing and I went along. Yes, they would take us on their list, but ‘What did we need?’
‘Well, two bedrooms, wheelchair access, walk-in shower, lifts or ground-floor accommodation’.
‘I don’t believe we have anything that meets all those requirements. You will only get that if you have something custom-built’, I was told.
In November I became very excited when eight two-bedroom apartments became available in a new build. All the flats were wheelchair adapted, with walk-in shower, large balcony, and were close to Canary Wharf.
Just before Christmas we were told we were going to be offered one of these new flats. How was it that we came to the right place just as these properties were released (they would only be offered for one week)? Again, as at so many times in our lives, we saw God’s sovereignty at work.
We love our delightful new apartment. You can move around it in a wheelchair and it has two bathrooms and two bedrooms. The location is perfect. There are cafes, restaurants and shops right on our doorstep, as well as a Docklands Light Railway station. God’s goodness has overwhelmed us.
I read recently in Deuteronomy that the children of Israel had to sew blue material on the bottom of their garments, so, while looking down as they walked through the wilderness, they would be reminded they were heading for heaven.
Arthur’s mansion in heaven will soon be ready and, when it is, God will take him there. If he can lavish all this on us now, whatever will his home in heaven be like!
This is my story. Arthur has his own story and it will be different to mine. I often don’t know what he is experiencing, and yet I know he is very peaceful and amazingly content.
He never complains. I can tell he is greatly encouraged as he listens daily to Bible teaching, and sometimes I hear a resounding ‘Amen!’
I know that ‘the eternal God is his refuge and underneath him are the everlasting arms’ (Deuteronomy 33:27).