"When you kiss me, do my lips feel numb to you ?" My wife asks. I tell her that they feel wonderful to me. But her eyes fill with tears and her mouth trembles.
It's all a bit much for her. A body that is never not in pain . Days reduced to lying in bed or "resting" on the settee. Eyes so tender that the curtains have to be pulled against the light. Exhaustion. Acute senstivity, to most food and drink. It gets her down sometimes. She feels bad about the impact she's having on my life, caring for her 24 hours a day. She gets frustrated because there is so much in her life that she'd like to do.
Like going for a walk together, as we used to, a long time ago, hand-in-hand. Instead, when we do manage to get out I push my wife, short distances in a wheelchair, ever so sensitively, because her body cannot take the vibrations of the pavement. Like being able to be touched, without it hurting. Like being able to act upon the 101 ideas her active mind, in a befuddled brain, comes up with, all the time.
But always the pain, the exhaustion, the numbness. Always the struggling start to each new day, her body on fire with suffering. Always my less than perfect attempts to help, to comfort, to encourage, to hold. I hold her. As I've done so many times before. I hold her and pray silently. "Hail Mary, full of grace.." Please, Jesus, help her. Please.
Jesus always helps. Not to take away the pain. But to fill it with his presence. Someone said recently that we are the happiest couple he's ever known. God bless him. If only he could witness the arguments, the many, many tears. If only he could hear the rage that erupts against the illness, the devastation. If only he could feel the levels of frustration, the grating irritation, that we feel, sometimes.
Our happiness, for we are happy, is forged in fire and strengthened like steel. Stripped of most of the props that keep others going : career, status, pubs, cinema, country walks, money, Christ is very real , especially to my wife. She touches me deeply and transforms my life with her living faith and penetrating insight. Like Mary we journey in partnership with the Holy Spirit, who has led us to the foot of the Cross. At the foot of the Cross you are challenged to grow and change.
We might have made this journey on our own. But I don't think so. You have to learn to cope with the illness. This happens on different levels. At the deepest level my wife aligns herself with Jesus on the Cross, and shares in His suffering. Our combined experience has helped us to open our hearts, in love , compassion and healing to each other, to others whom we know are suffering and to God. We could not have come this far without the encouragement, support and the very real love that our parish priest, Father Philip Law, has for Christ. His is a faith that bubbles over and embraces us. He has stood by us and shared many of our tears.
In the face of a medical profession, that is overwhelmingly suspicious and often dismissive of ME, my wife's illness, our priest has managed to find us a supportive GP. He ensures we receive the eucharist daily. He annoints and uplifts us with the Sacrament of the Sick. He prays for us. He is there in a real way for us. It means everything.
Astonishly, many of the people that we are in contact with, through our ME network, the 25% Group, receive little if any support from their parish or their Priest. Not surprisingly some of these people have drifted away from the Church. Others are very angry indeed.
What has helped us has been a real, loving encounter, with our priest and with a few members of the parish who have become friends, spiritual companions and in one very special case a prayer partner, who more than anyone, keeps us going and growing.
Although, we are part of a lively parish, it is particularly hard for my wife, in her isolation, to identify with it. I share her isolation as I go to Church on my own, and it is impossible for me to attend any social functions. Our spiritual community exists for us mainly in the 25% Group prayer circle, whose members keep in touch by post, sharing their struggles, their insights, their suffering,their love of God, which is so alive and active. The Holy Spirit is clearly and powerfully at work here. As John Paul says in our sufferings there is : "concealed a particular power that draws a person interiorly close to Christ, a special grace." (Salvifici Doloris 26). These are spiritual riches that have so much to offer a parish. A parish that sees itself in terms of the fit and able, that excludes and isolates those who are ill, disabled and housebound is in great danger of spiritual bankrupcy.
My wife and I reach out to our community and share something of our experience, through devising and running an "Opening your heart to God" group, which began last Advent and has followed the Church year through Lent and into Pentecost. My wife develops the exercises, I run the group and she holds and supports us in prayer from home.
If we were to speculate on what would help us most from a parish, as a couple trying to support each other through the experience of chronic illness within marriage then we would suggest :
Prayer Team support for people who are housebound, that would come and pray with people. Also the knowledge that there is a prayer team that would pray for anybody regularly, so you know that support is there.
People that would come and sit with my wife, who is so sensitive to noise, and is so ill, in silence.
Joint spiritual support for couples in this situation to share their real difficulties and struggles and spiritual direction on how to lift it all up in prayer together and bring healing into the relationship.
Chronic illness places every concievable pressure upon a marriage. It would be wonderful to find some way of housebound people andcarers establishing a connection across a parish, so they could meet and upligt each other spiritually, so that they don't feel isolated and so that they can feel their suffering can be used for the benefit of others.
As my wife explains : "My illness has taken away everything, but it's given me the space and the silence to grow spiritually and to learn how to love in a profound way."
Truly , in his wounds, we are all healed (1 Pet 2 :24)
Greg Crowhurst