Apricot Press

My son is terrified of spiders. This morning, just before the dawn chorus had even kicked in, our three year old crawled into bed beside me and tearfully told me there were naughty invisible spiders in the room. This has become a regular thing. 

His father and I talked the other night, wondering where it had come from, this fear. His father is the kind of guy who will ever so gently pick a spider up out of the bath with his bare hands and take it outside. I’m not quite as *brave as this, but I love insects, and am about as capable of a girly scream as the spider is. And yet our son screams the place down. We tell him they are in his imagination, that they are not real. 

                                                                                                                  (*crazy)

I always thought of myself as someone who had their shit together. Someone who was tough, and self sufficient. Three kids, a full-time job. Three years ago my youngest son was born with Cystic Fibrosis, or CF for short. We had no idea we were genetic carriers, his father and I. Our world imploded, collapsed in on itself so intensely I only really looked back up out of the little bubble we created for our family a year or so later. 

Once the dust had settled we realised that our beautiful boy was just the same as any other little boy. He just needed us to be stronger and better than we had been until that moment. He needed us to help him be strong, to face his reality with a pragmatism I thought came naturally to me. 

It turns out it did not. So determined was I that he be treated the same as any other gorgeous, babbling baby, and not someone to pity, or assess anxiously for illness, for otherness, that I forgot to bring other people along for the ride. I got so good at making our new reality entirely normal, that most people did not even know he has a life changing condition. 

And in reality, why should they? Those people who need to know, his nursery teachers, relatives, close friends, they all know, and understand. If you met him in the street or playground you would have no idea that Clay’s lungs fill with mucus, that his liver does not produce enzymes for him to absorb fats from food. That his life would be cut drastically short, were it not for miraculous medications that mean he will now live an almost entirely normal life. He takes pills, and does physio, and we keep him away from places where bacteria might lurk. The invisible threat comes in many forms. Other than that he’s a completely ordinary, extra-ordinary little human. 

I lost friends on that journey. The reactions from some were so startling it made me reassess my friendships, how I viewed others. Similar to a relationship breakup, where you realise some people just don’t know how to identify with what you are going through. I think there are those lucky people who have never felt truly intense grief. Who have not lost someone, or something, never lost an idea of who they thought they were, or what their life was supposed to be, and therefore they cannot possibly understand. They have never stood at the precipice of their lives and looked down into the void, and realised how much easier it would be to jump. Have never stepped back, turned around and quietly carried on living. How could they possibly then avoid asking the heartless questions, or stop themselves making inappropriate comments?

My son was born, and this was my story. The mother, I felt I had to be the strong one, the force of nature. I just kept on going, because that’s what you do. And then I got sick too.

I am still ill, the recent diagnosis of chronic fatigue syndrome both helping me cope, and providing a full stop to the version of me I was still getting used to wearing, like a new coat. I had to adjust yet again to the silhouette I now saw when I looked in the mirror. M.E., C.F.S. Just a series of letters, spelling out a whole new life. 

It’s only recently I realised the strange echo – C.F., C.F.S. What is that? Why would I get another invisible illness, another disease that no one can see? On some deep cellular level has my body tried to take on a version of his burden? Do I need to follow my child down this path, in order to prove my love for him? Magical thinking made biological? I have had some strange reactions to this diagnosis too. I have lost a few more friends.

We have a complicated relationship with illness. Society does not like people who are ill, where there is no cure. We like hopeful stories, we like solutions, we like chutzpah and grit and resilience. A bit like those spiders, we are built to fear illness. Some ancient survival instinct kicking in, that makes us banish those who are ill, deny their existence, quarantine them on islands far away. The last few crazy years have shown us how instinctive our response to disease can be. It overrides reason. We do not like illness, and by default, the ill. Make that illness invisible, and multiply the fear. 

Walk past me holding my son’s hand in the street and you’d have no idea. Have a cup of tea with me on a good day, with my son playing at your feet, and you’d probably never guess. We have fought hard for this illusion, for this normality. Those with chronic illness might recognise this fight. This clinging onto some semblance of a normal life. Happily paying for an afternoon of laughter with a week in bed. All in order to feel human, to not make a fuss.

The problem with ‘dynamic’ illnesses is how we can’t pin them down. They are not a broken leg, a cancerous lump. They cannot be fixed with a pill, a surgeon’s blade. They change, shifting like sand beneath our tired feet, they are misunderstood, diagnosed only through a slow process of elimination. 

Doctors don’t like saying they don’t know. Far easier to blame the patient. Recommending yoga, CBT. Practise mindfulness. Be consistent, let us diagnose you, categorise you. Take your bed-ridden sadness away from our eyes, take meds and get better. Stop making us feel bad. And for god’s sake don’t go looking happy some of the time. 

Of course what I have is very different to what my son has. His father and I have started to talk to him about his CF. We tell him he has to take these pills so that he can get big and strong. We tell him he can’t splash in old puddles, that he has to wash his hands carefully. We want him to feel ownership of his condition, to know he is both different and the same as every body else. 

Because that is the truth, isn’t it. We all have something invisible. We are all carrying burdens, be they illnesses or heart break, secret desires, hidden hurts. Some of us wear them more lightly than others. And some are able to take those burdens, and can lift them carefully from the shoulders of others; can take the bags and share the load. 

My son and I spend a lot of time together these days. I lie on the sofa, he plays Lego, or jumps around in his Spider-Man suit. He tells me about his dreams, and I try to forget some of mine. I have had to come to terms with the new me. 

This new me is not very capable. She has to ask for help, with simple tasks. Be driven to the shops, on a good day. Needs help lifting shopping bags, can’t manage the school run. She says no to games of hide and seek with the kids, no to nights out. The community of friends and relatives who I have learned to lean on, who stayed the course, or emerged from the wreckage, have enabled me get through things I thought you couldn’t survive. Helped carry burdens too heavy for any heart to bear alone.

Photo credit: Cole Keister