The simplest pleasures tend to be what people miss the most. The things we take for granted are the things you notice when you can’t do it anymore. The fear of losing them can be the most daunting part of coming to terms with the diagnosis.
In the twenty days since we received the diagnosis (how has it only been twenty days?), the simple things in life have had a new awareness in my eyes. At first, things like climbing the stairs to my sister’s flat and saying good morning to her would have me tearing up; they’re all things my mum won’t be able to do one day. On the Friday, two days after receiving the news, brushing my teeth had me crying. We take so many things for granted, every single day.
I know I’m not alone in feeling this way. This weekend, my mum leant over to pick up her beloved pug, and it suddenly hit her that one day she won’t be able to do that. She’ll always have him to cuddle though. He’s such a lazy boy – when the day comes that she’s in a wheelchair, I can almost guarantee Oscar will want to sit on her lap whilst on walkies at the park.
What I really want to talk about, though, is one of the greatest pleasures I have in my life, and my efforts to stop feeling guilty about enjoying it. What I want to talk about is food.
Yesterday I was drafting a blog post, which I decided not to publish, about tasks I keep missing because I cannot summon the motivation to complete them. When I was discussing cooking, I stumbled. It’s not a lack of motivation which stops me cooking. It’s an all-consuming guilt which drives me away from the oven. I am slowly moving past this guilt, but I think this is an issue which I should explore.
Don’t get me wrong, I’m no Gordon Ramsay or Nigella Lawson. My culinary skills are nothing to be admired. But I really love cooking. I love the organisation of preparing ingredients, calculating timings and arranging it on the plate. I feel content knowing I’m eating a balanced and varied diet, because I know exactly what has made up each dish. Nothing, for me, beats that glow of seeing people I love eating food I have made for them. It’s one of my principle pleasures in life.
Except, for the past three weeks I haven’t really cooked. I have made meals – I’ve thrown some ingredients together and brought it to the boil, barely requiring any effort. I have eaten so many ready meals and takeaways. This year I was doing really well with my weight loss – I had lost almost two stone and my BMI was healthy for the first time in three or four years. I don’t want to face the scales anymore. My healthy eating has disappeared as I have sunk into comfort food – a problem my mother and I have always shared.
She can’t share it anymore. It’s probably a good thing, in a way. She won’t be eating unhealthy things, and she won’t be snacking constantly. But Mum has always loved food. The taste and texture of all her favourite foods are, in a way, lost to her – and so suddenly too. It’s so sad.
I suppose this is something all people with MND suffer from. Everyone has favourite foods, and the idea that you can’t eat them anymore is tragic.
Even when my mum has her PEG fitted – a tube allowing her to be fed directly to her stomach – she’ll still be able to eat food, as long as it’s mashed up. But that does mean some things aren’t on the menu anymore, and the texture of those delicious foods on her tongue isn’t something she can experience again. It’s so unfair. I was in a sweet shop on Sunday and saw some coconut ice – can she still have her favourite sweets? I don’t know. I don’t want to risk it. But I hate the idea she’ll never have it again.
This is where my issue with cooking has come from. How can I spend hours lovingly preparing meals when I can’t stop thinking ‘I’ll never make this for Mum again’? Each meal feels like a reminder of what has been lost, and what we will lose.
At the same time, I’m eating far too many treats. Partly this is comfort eating – lots and lots of sugar to stimulate the pleasure sensors in my brain and make me feel better, just for a moment. Yet when I eat all these things I should limit – sweets, chocolate, doughnuts, bread, crisps, cake, beer – I keep thinking ‘I am so lucky to be able to enjoy these things’. I know PBP isn’t genetic, but I can’t stop wondering if a day will come when, for whatever reason, I can’t eat them anymore. Surely I should enjoy them while I can?
I need to be cautious of this emerging relationship with food. I know it can quickly snowball into something deeply unhealthy. I don’t know if I will ever finish adjusting to this new normal, but as I come to terms with it a bit better, getting back on track with my diet has to be a part of that.
That’s why yesterday I cooked a proper meal for the first time – one which took planning and timing. To celebrate the May Day bank holiday and my partner’s birthday, I cooked a roast pork dinner with all the trimmings. And it felt good. Almost as good as how it tasted.
I do feel guilty. I enjoyed that meal so much, and it is something my mum won’t experience again. Her jaw is definitely too weak to get through some crackling, not that she was ever really a fan anyway. I felt almost ashamed when I shared the image of what I had cooked, because I don’t know how it made my mum feel. I don’t want to upset her. At the same time, I want her to know I am coping and that I am happy.
This is something I definitely need to work on. It will take time, but I’m determined to get my relationship with food back on the right track. Although my world now revolves around my mum, and making her as happy as possible, I have to remember that part of that is also taking care of myself and the other people around us.