Penny’s story
I MET Malcolm when we were postgraduate students at Cambridge, in January 1990. I was studying for a Ph.D. in engineering (nanotechnology), and his doctorate was in mathematics (operations research). We met remotely on the Cambridge University mainframe computer, and discussed life, the universe, and everything, in between working on our Ph.D.s. Within six months, Malcolm had gone from agnostic to confirmed Anglican, and we were engaged to be married. Life was good.
That summer, Malcolm went down with a virus. That was more than 31 years ago. I remember thinking, at the time, that it would be a week or two, and then he would get better, and we could get on with our second year and planning our wedding. The virus faded, but he didn’t get better. If anything, he got worse.
He was diagnosed with myalgic encephalitis (ME) a year later. The prognosis wasn’t known then, but it is thought that fewer than five per cent recover.
During wedding preparation, our vicar, the Revd Donald Humphries, asked what it would be like if Malcolm was still ill after ten years. That was inconceivable! But at our wedding, a few months later, it was touch and go whether Malcolm would be in a wheelchair or not. On the day, he could stand up, propped up by his best man, his brother Andrew, who kept a steady supply of sweets to give Malcolm enough oomph to get through the day. Surely it wouldn’t be long until he got better?
Malcolm often didn’t do more than an hour or two a day on his Ph.D., as he just couldn’t, but one day he had a brainwave in the bath. This solved a mathematical problem that people had been grappling with for many years. It was a totally new way of approaching the problem, and this new solution had useful, practical applications in real life.
Because of this insight, and despite his ME, Malcolm was the first student in his department to finish a Ph.D. in the allocated three years for a long time, and he landed a coveted research fellowship at St John’s College — surely the first step in a glittering academic career?
I, on the other hand, as Malcolm’s carer, generally did everything at home: supporting, cooking, shopping, organising, and more. As a result, my work was miles behind, and my thesis took more than a year extra to finish. With little energy to spare, we focused on work and then church, where we were in the music group. Life was constrained, with little time for fun with friends, to get involved in other activities, and to support friends and family. It wasn’t an easy way to start married life. We figured that, surely, it wouldn’t be long until he got better and we could enjoy life to the full rather than always have to focus on conserving energy.
Aged 30, however, Malcolm had to retire permanently on ill-health grounds from a full lectureship at another university. His promising career stopped dead in its tracks. Suddenly, I was the breadwinner, working as an IT analyst in a big company. Everything felt terribly serious. The pressure was huge, and I was also caring for Malcolm on top of everything else. God was a rock for both of us personally, although our prayers for healing were not being answered as we hoped they might be.
Sometimes, church was helpful, and sometimes it added to our burdens: suffice to say, removing support for people when they’re in crisis is not a good idea, and neither is passing prayers around a chain without permission. I got the feeling that people felt that there was something that they needed to fix, because Malcolm was ill. Also, it didn’t help that he didn’t always look ill, as ME can be an invisible disability; so people assumed that he was fine when he really wasn’t.
We had two children. We loved them to bits, but they were very tiring for Malcolm; so we paid out nursery fees, which added quite a load for me as breadwinner. It felt like a struggle. I was often exhausted with caring, children, work, and organising absolutely everything (finance, domestic stuff, house, car insurance — the lot). But, surely, Malcolm would get better, and it would all be worth while eventually.
As the children grew up, they got used to a mother who worked, sometimes away for days, and a father who was present, but fragile physically. While Malcolm’s energy fluctuated from day to day, and from year to year, whenever he pushed himself too far he would suffer for weeks, months, or longer. My daughter acquired the nickname “Little Mummy” from our second child, who is two-and-a-half-years younger, as she would step in if Malcolm needed support when I was away.
Both children, now adults, are tuned into the needs of others, and have been able to be independent from an early age.
As for me, 15 years into our marriage, I found a new way of working: redundancy gave me the opportunity to take the risk of setting up as an independent consultant, and I started writing books. I began to realise that, perhaps, this was the life that we were going to lead, that we shouldn’t hold our breath waiting for a future when Malcolm’s health was restored, but focus instead on each present moment that we had been given.
Where are we now? While we believe that God can heal, we have, after decades, both stopped living with the constant hope of a full physical healing in this life. In some ways, that makes it easier. Instead, we both know that there will be full healing for everyone when God’s Kingdom comes in all its fullness. People have a lot more to be healed of than physical sickness, however horrible that might be. We put our trust and hope in God, and live the life that we have, not the one that we might dream of.
Our children have left home to go off to university. I am now a Reader, and have transferred to an inclusive church, where disability is a focus for inclusion. They don’t always get it right — nowhere could — but at least they’re trying.
I’ve also been relieved (temporarily) of my caring duties, in a most unexpected way. Malcolm went to visit his family and friends in New Zealand in February 2020, expecting to return in late March. Given his ill-health, rather than return mid-pandemic, it made sense for him to stay. He has been safe there.
We have never been apart this long, but we talk regularly, albeit remotely. In Malcolm’s absence, I have started an MA in theology. I wonder whether I’ll write my dissertation on ill health and the Church. Who knows? For now, I’m enjoying just looking after myself for a change, as both the children are studying; but I’m looking forward to being with my husband once again, whenever that might be.
Malcolm’s story
I AM Malcolm. I have had ME for 31 years. It is a debilitating and distressing neurological condition affecting many of the body’s systems, which I developed after a short viral illness. ME has been known as chronic-fatigue syndrome, or even “yuppy flu”, although it is much more than fatigue. It is thought that a proportion of long-Covid sufferers have developed ME. I wouldn’t wish it on my worst enemy. It has affected my life enormously.
Dr Malcolm Pullan
I went down with ME as a postgraduate student. I was a high achiever in those days, holding an international scholarship to Cambridge. I had my whole life before me: a fast-track academic career, married life, and, of course, lots of mountains to reach the top of.
Unlike many, I was lucky to be diagnosed within a year by a leading consultant, who ruled out any psychiatric causes. I say “lucky”, because many are not believed, or are written off as neurotic or hysterical.
Many GPs know little about ME; so I tend to stay away if I can. I’m amazed at the difference in their attitude when I present with another condition, as I am believed and treated with compassion. After my diagnosis of ME, I struggled on for a few years, but, at the age of 30, I had to retire from work completely as my symptoms worsened. I have never returned.
I am a Christian and a member of the congregation at my parish church. How does this affect me? God is the bedrock of my life, underpinning and giving meaning to everything.
God could heal me — but, so far, he hasn’t. Initially, I used to pray: “Please heal me” every waking hour when I was lying ill, alone, and frightened, in bed on the other side of the world from my family in New Zealand. Then, one day, I felt a call to trust and accept. It wasn’t a stern “No!”, just a gentle and loving call to let go of worrying about when I would better. I did. I felt a huge sense of peace. It was soon after that that I began to improve a little, enough to get me to our wedding.
I have never really gone back to the “Why me?” questions or the endless, desperate “Heal me!” prayers from the very early days. Indeed, when people have asked for prayer in healing services, it has sometimes felt manipulative, and this, together with having hopes dashed, makes me reluctant to try yet again. I’m reconciled with the fact that physical healing may not come in this life.
The Pullans on their wedding day, 24 November 1990
Most people don’t appreciate or respect the journey that I have been on to reach a hard-won, but fragile, state of equilibrium between hope and acceptance. There have been periods of my life when I’ve been quite a bit better, and even close to doing something new and exciting. Once, I was well enough, for long enough, to go through discernment for very part-time, non-stipendiary priesthood, and was all set to go to a Bishops’ Advisory Panel, but, as so many times before, my hopes were dashed by a relapse of ME.
Every time setbacks happen, I hold on to the verses in Revelation 21, especially verse 4: “He will wipe every tear from their eyes. Death will be no more; mourning and crying and pain will be no more, for the first things have passed away.” This is my hope. I know that this dreadful disease will pass eventually.
I wonder why we Christians don’t expect suffering to come our way. We follow Jesus, who modelled the way for us, and that included immense suffering. We live in a world that is “groaning in labour pains” (Romans 8.21-23); so suffering must be part of the here-and-now for humanity. I have been forced to accept this, but most Western Christians do not. They have absorbed the individualistic culture of our society, and their faith is wrapped up in what God does for them as individuals. Everything is centred on “me”. It is just not possible to hold this fallacy when you have long-term illness.
Indeed, Christians and churches can be quite problematic for those of us who are chronically ill. They can make life more difficult, adding an extra dimension to our suffering which we could really do without. I would be a rich man if I had a pound for every Christian who had said things like:
• “Just read the psalms and you’ll feel better.” (Just the sort of thing that Job’s comforters would have said!).
• “What sin have you committed to be so ill?” (While assuming that they themselves are OK, being physically well.)
• “Everything happens for a reason.” (Argh!)
• “Well, do you even want to get better?” (Of course I do. You try having an incurable condition with no treatment and a terrible quality of life.)
• “Why don’t you try . . .” (followed by a quack treatment that might have helped a friend. . . I suspect that people say this to alleviate the pain and discomfort of being around other people’s pain, and to be doing something).
• “Mind over matter — just choose to be better.” (You wouldn’t tell someone with a broken leg to just think themselves better; so why do this to me?)
In church, I have been ignored and pitied, and people have even used my illness as a way to have power over me. It really doesn’t help.
One important aspect of church is to be able to serve others. Often, when I try to serve people, they don’t know how to react. There have been times when I have been unwell, but have asked people visiting me about their own problems. The response is generally surprise that someone so ill should be concerned about them. I have shifted the power balance, and that unsettles them.
ME fluctuates so much that one day I can do a lot, but the next day I can do very little. This can be difficult for people to get their head around. Ideally, I’d be able to give what I can in service. Before my current “brain fog” set in, I was told I was a gifted speaker and writer. To use these, the church required me to do a long, formal course, but it was beyond my capabilities; and so these gifts were not used. Now, those gifts have disappeared, and, with brain fog, I often can’t write and think clearly. As a result, this piece has been written up by another person on my behalf.
What can I offer to others with chronic conditions? Or to those who come out of the pandemic with a diagnosis of long Covid?
First, be prepared to find Christians and church unhelpful occasionally (sometimes, my most meaningful encounters with God have been when I have been alone in bed, unwell).
Second, be prepared to let go of many things, especially trying to “achieve” or “do” all the time. In so doing, be open to other blessings that can come to those who are not too busy to see them.
Finally, try to hold on to the promise that all will be well, albeit, perhaps, not in this lifetime, and enter into that place of fragile equilibrium between acceptance and waiting in hope.
Dr Penny Pullan runs a consultancy providing support and mentoring in virtual and hybrid leadership, and is a Reader in Leicester diocese. Her most recent book is Making Workshops Work: Creative collaboration for our time.
Dr Malcolm Pullan has been retired on grounds of ill-health for nearly 25 years. He is in lockdown in Auckland, New Zealand.