My life took a turn ten years ago.
I did an MA in Biblical Studies and towards the end I got ill. No surprise really, as I had worked for churches doing ministry whilst doing a 2 year part time MA in one year full time. When I came to look back on that year with a doctor later we would realise that I didn’t have more that one day off in a row for over six months. But, I was young and had always worked long hours because I have always picked jobs I loved. I was 30. I never got better from that illness.
At first we thought I was merely burnt out. I was diagnosed with depression because I was sad and tired all the time. I spent the year working an admin job so that I could write my PhD proposal in my spare time and my mood lifted. But I was still exhausted. I had pains in my arms and frequent headaches. I had always had awful menstrual issues but now these resulted in me sleeping for often 18 hours straight once the cramps had gone, unable to think or do anything. But most telling that something was wrong was that I started to lose my words. Nouns started to elude me if I was tired. My husband at the time became a master of lateral thinking because I could often only describe the function of something: can you get my bag, its in…that place where we make the food?
When we moved to Brighton I would go for walks in the downs. I loved walking alone but found myself unable to get up Devil’s Dyke without constant breaks. I had thrown myself into exercise as this was the remedy for depression. Go outside! Fresh air! But the more I did this the worse it got. After a year, two episodes of fainting at the gym and the constant feeling of weakness we were worried something was wrong with my heart and I bullied my doctor into tests. My mood was fine, I was in a loving home doing the PhD I dreamt of, two cats. I was not depressed. I was sick.
I eventually got a diagnosis of CFS/ME.
Chronic Fatigue Syndrome/ Myalgic Encephalomilitis.
It was nice to know someone didn’t think I was making it up. It was frustrating because there is neither a cure nor any real treatment. What is wrong with me is a multi-systemic dysfunction which may be neurological though they don’t give you tests. ME is a debilitating illness which needs more study and I can’t explain it fully here so please do go to the ME Association website and find out more. http://www.meassociation.org.uk You see for years it has been treated as a mental illness not a physical one. The problem with this being that you cannot, no matter what CBT you get good at, or positive thoughts you have, think your way out of bed if your legs dont work. And some days they don’t.
Why am I telling you all this?
Well, my ME has irreparably damaged my life and I’m still not ok with it. I have questions for God about why this happened and how I’m meant to deal with it that are unresolved. And that tension I said I loved so much….well, it hurts. It manifests as a grief that I can barely express and I don’t like it.
I realised last year that I have been ill for over 10 years. When I got sick no one talked to me about how this would affect my psyche. They talked about physical issue but no one offered me counselling for what I was losing or would miss out on. A 30 year old who had pushed herself her whole life was now forced by her own body to stop. I was not prepared for what I would lose. The rhetoric of illness I had grown up with was one of ‘fighting’. We treat illness as a battle to be won. So I fought. I refused to give in to this thing. I kept going. I ‘managed’ it by giving over my spare time to rest but carrying on working.
But if illness is a battle then I lost. I am losing. And I wasn’t prepared for that outcome. I wasn’t prepared for the fact that I would get ill and never get better. And because I was taught to think of it as a battle, then every time I gave in, I failed. So I made myself more and more ill.
Better theologians that me have written about disability. The rhetoric of the battle to be won is incredibly damaging to people with chronic illness. We will not physically win this. Maybe we will mentally win…but honestly when the main symptom of your illness is fatigue, deep, debilitating fatigue, most of the time you haven’t the energy to mentally win at anything.
When I finally accepted that I was ill in a way that was disabling, I had to put down many things I loved. Energy for tasks is a 1:1 swap for me so taking a shower is as tiring as seeing a friend; doing my marking is as tiring a going to the pub. I have to make direct choices before a day starts about where I will put my energy.
Going to church became impossible. To get up, dressed, presentable and out of the house in the morning was so tiring, but being in the noise and having to concentrate was even more energy. I was always working on Monday so Sunday had to be a day of rest like I had never done. But that meant a chunk of my ministry – teaching young people – was gone. Part of my identity, the way I expressed my faith and service to God – gone.
People would say I was still useful to God because I could still pray…but let me tell you secret about your friends with exhaustion and fatigue: sometimes we cant even do that. You see when I get fatigued I can’t string a sentence together. That noun problem I told you about earlier, its got worse. I often say words in the wrong order, I don’t remember names, I barely can articulate my immediate need. So coming from a charismatic background I felt utterly lost in my faith practice. All the things I valued were being taken away.
I have lost so much to this illness. And I battled with it for so long that I didn’t face that grief until last year when I realised my 30’s had gone by. People were sharing 10 year photos on facebook and nearly everyone had something good to share, and I suddenly reviewed my 10 years and was faced with 30 year old Charlotte’s abilities vs 40 year old Charlottes disability.
I’d got a PhD in that time, so you’d think it wouldn’t matter. But the amount I can accomplish in a day is down to about 4 really good hours. (by the way, that makes my ME ‘moderate’, thats how severe this illness can be). I was faced with all the things I hadn’t achieved, and had put to one side. The stark contrast laid out before me of the friend, sister, lover I had been vs the one that I was now caused me considerable grief.
It still does.
And I am both angry and thankful to God about where I am. I don’t understand my illness. I know it could be worse. But not facing the anger and sadness and only being able to talk about what I’m grateful for has also been damaging. Because I had never felt that I was allowed to hold that tension. I have always felt that I am to be grateful because I’m not as ill as I could be, despite the fact that this illness robs me of my one great gift – language and self-expression – I am always ‘meant’ to be able to turn it around to hope. I hate seeing the tension in peoples faces when I tell them how deeply painful this illness is on physical, spiritual and emotional levels. So I resolve it. I do not love that tension.
In my darkest moments I question God because I got ill by following what I believed, and others believed, I was called to do. I undertook those jobs with prayer and discernment – why then did they lead to this?
Now, I know I could have managed my life better. I know that the cause of my ME is not so straightforward. I know that theologies of illness and healing are also not so simple as ‘if I had faith I would be made well’…but my darkest moments I wonder what I did to deserve this. I wonder why I am not healed when my disability has caused me to lay down exactly what I was sure was my calling from God. I question why God would make such frail bodies? What did I do that caused this?
You see, questioning is a pastoral issue.
Because I don’t really think that I caused this illness, my illness makes me scared and my question comes not from my intellect but from my fear.
I don’t really want a discussion about healing – I have read and seen enough to know that my body is valuable and wonderful as it is. But my question comes from my grief and my difficulty getting used to this new body and getting used to limitations.
When I ask “what is the point of me if I can’t even pray?” I am not actually asking for an answer, I’m searching for that parental embrace that tells you that your very existence is a joy.
So I have to be honest with you I do not love these questions or these tensions. I wish they did not exist. They pop up when I don’t get a job because of gaps in my CV that are due to the illness, and I get angry. They rear their heads when I forget to call someone and have to make an excuse, or I cant express a simple request without getting frustrated at my partner and I get sad. They come from wounds which open every time I have to turn down work, or tell a friend I can’t be at something to support them, or tell my family I can’t do Christmas, or my partner that I can’t listen to them today because noise hurts me. They come from a place that somedays is too difficult to articulate.
And those questions still hurt, even though I know that God is big enough that I don’t have to choose between frustration and thankfulness. They still just hurt.
I believe God is in the tension even when it hurts. I believe God is in the darkness holding our hand as we get used to new realities. I believe God is the light in that darkness when we feel safe enough to see it again.
As I compile the questions that people have been sending in to Phill I am mindful of the fact that questioning is a pastoral issue. We want to give something that helps people questions and hold tension and maybe even enjoy it. But I am not taking them lightly. I shall not tell you that you just need to enjoy the tension. I know that some of these things come from your deepest parts and I will be gentle.
because I love questions….but also, maybe I don’t.