Willesden’s Area Director of Ministry, Andrew Corsie, talks with John Beauchamp, Disability Ministry Enabler, about ministering well with MS.
The questions for this interview come from the January/February edition of a publication entitled Enable (a publication about the disability community) and are adapted:
Tell us about your journey with MS.
As is quite common for people who are diagnosed with MS, it’s quite clear to me I had the condition a number of years before being medically diagnosed. Chronic pain, particularly in my legs, had been with me for some time. Various medical professionals investigated without success. However, it was in December 2014 that the diagnosis was given to me – it was in the week running up to Christmas – the information that came from the consultant was quite straightforward: “you have MS of the primary progressive type”. And with a smile on my face I responded, “a happy Christmas to you sir!” The long journey to arriving at this point was actually one of relief as I now knew the reason for the physical difficulties I was having.
This life changing situation has not only meant a change in the way I conduct my life, but also has caused me to reflect on, and to make necessary changes, regarding the way I go about the ministry I offer to the church. I now have difficulty in walking, and am not able to write with my right hand and need to manage ‘fatigue’ – in other words the energy I have for each day – with care.
What does ministering well with MS mean to you, and in what ways has this affected the way you go about it?
To begin with my response was to struggle in learning to accept that I had this condition and that my life needed to adapt. There are various limitations that I had to respond to. To begin with my response was to find ways of working against those limitations, continuing to work at the pace I was familiar with. Gabor Mate, a doctor and neurology specialist, suggests that those with MS develop this condition because they are unable to say “no” – if that is the case then I was a reasonable candidate!
But gradually I had to learn to accept this condition and find ways of not only living with it, but also responding to this new reality. Leadership and ministry for me was going to change. What I took into my prayers was not only the questioning of God as to why I had this, but also how I was going to offer ministry?
That was, and still is, a gradual journey of accepting the physical restrictions now placed on me, but also to discover new opportunities in my journey with God and His people. I needed to be even more open and vulnerable – in other words it opened up my life to a greater experience of the humanity I needed to live and how I engaged with others.
How has ministry changed whilst managing MS?
I’m now very aware of the physical limitations placed on me and the undefended type of leadership I now need to offer – in other words I am more open about needing to ask for help, and this has led me into many important pastoral conversations. To hang my walking stick on the altar as I’m about to celebrate the Eucharist was a practical necessity, but also something I need to explain to others! Indeed, the whole way I lead an act of worship has meant adjustment.
My weekly work involves training and leading workshops – new ways of managing that has changed and developed. I have got used to needing to sit, sometimes, while speaking if my legs are exposed to much pain.
What has helped personally, is a change of diet, regular exercise, together with the loving support of colleagues. When I regularly visit churches, as long as I’m open about what I need, I experience a caring response.
I think the vulnerability that people see, enables them to reflect on all our limitations and how we offer ourselves to God and experience, in practical ways, the enabling of the Holy Spirit.
What challenges are there in dealing with MS?
Depending on how the condition develops, there is a reality to not being as physically able as before – so in some ways your world gets smaller. That can be difficult to cope with. Accessing various activities is hard work as disability access is not always easy to navigate. The need to find alternative ways of enabling life to be enriching needs to be found. From being someone who was very physically active, that is no longer an avenue open to me. My daily experience with the uncertainty of what fatigue will be like is a challenge.
My expectations of myself and what I can do needs to be renegotiated, not eliminated. Thinking creatively of other ways to reach my objectives can be demanding and tough.
What advice can you offer to other disabled people in ministering well?
As best you can, delight in the God who has made you and calls you as you are, in service to Him and His people. It’s not easy to ‘delight’ when days are particularly difficult – but a positive attitude is important to your overall health.
Keep close to God and also to those supportive friends and colleagues around you.
Allow your theology to develop and evolve as you investigate disability and the ways it informs our understanding of God, what being part of the community of Christians involves and our service to all in our parishes and chaplaincies. It’s crucial that our theology of inclusion develops so we can minister effectively.
I remember being stopped in the street by a young person who asked me if I had a neurological condition and would it be possible for them to pray for me. It was rush-hour and we were surrounded by many people. I said yes, please go ahead. The person placed her hand on my head and prayed. My embarrassment subsided and I accepted what was happening and the possibility of physical healing. It didn’t come. The person looked at me at the end of their prayer and asked: “well?” I shrugged and realised that this time the prayer would be answered in different ways. The person wished me a good day and left. I stood there pondering the experience.
Perhaps accepting the word ‘disability’ – that I am disabled and a member of that community has opened up new opportunities in ministry. Maybe, I’m fortunate to be able to offer myself in this way as part of the human family?! That’s a huge admission and something I have to challenge myself with each day!
Do you have any hopes for the future of MS treatment?
There is a considerable amount of research that is going on with regards to managing the condition, and also trials being conducted about its relief. I hesitate to use the word cure. I do offer myself to various medical trials that are researching continuous improvements. Autoimmune conditions are difficult to ‘cure’ – but to halt MS in its tracks would be a wonderful thing! Pray God that may happen.
