I’ve been enjoying the writing prompts that are sent to me by a website I write for.
The Mighty are a wonderful platform for sharing stories that illuminate the lived experience of people with disabilities or invisible illness, or the stories of their caregivers and loved ones. Their tagline reads
We believe in the power of stories,
the strength of communities
and the beauty of the human spirit.
Recently, they asked this:
Describe a time you saw your disability, illness and/or disease through the eyes of someone else.
I haven’t written this piece for them because it doesn’t really fit their format, there will be other things I can write for them. This is fiction, but close to my reality at various times in my illness.
See, their prompt got me thinking. It’s hard for me to see my illness through the eyes of someone else. I don’t think other people have to feel any particular way about it. But I wish with all my heart it was easier for others to understand it. I fully comprehend the perspective of well people, because I have been one. The sad fact is, that other people very rarely do see my illness. Even when I am right in front of them talking to them about it. So I began to think about who I was before. I think ill people need to remember who we were before. It helps us to understand the gap between. So this piece kind of evolved out of the idea of what might happen if the ‘other me’ met the ‘sick me’ at a school parents’ function. What would each of us think? And how hard would we really try to understand each other?
It’s difficult. Attending these school parent functions. You’d think it would get easier, the more you do. But no! There’s what to wear and the fuss with hair and makeup. There’s making sure the husband is home in time and the babysitter is up to speed with the kids’ routine. All the way to the function, we’re lamenting the fact that we never seem to get a babysitter so we can just go out and enjoy ourselves as a couple. It’s always for work events or school functions. Hardly ideal dates. We promise we’ll do that. But I wonder if we will. We’re always rushing about and there’s no time to pause and enjoy. It’s difficult, contemporary living. The juggle between work and life balance.
I know my husband will be off talking with a few of the other Dads within minutes of our arrival. And so I locate my inner steel. I’m wearing the right shoes, so I pull myself up taller, matching my heeled posture. A glance around the room tells me I was right to prioritise the pedicure over the gym this morning. Although clearly, most of these women managed both. Polished, white teethed smiles flash across at me as I move over to a group of Mums I know. We are still uneasy together, but I take a deep breath and remind myself that we are all in the same boat. We greet each other cheerily and the conversation resumes about the teacher. She is all slender sophistication, that one. I spot her mingling with another group. A father gazes at her with adoration in much the same manner as I have seen his son. It’s sweet. I self consciously watch the diamonds flash on a finger wound around the stem of a wine glass.
Wine. That’s what I need! I smile back at the familiar faced group and make a quick detour to the bar. Hubby catches my eye and nods a silent order. Fortified by familiar feel of the cool glasses in my hands I deliver his and make my way back towards the huddle of women I’d been chatting with.
On the way I notice another mother perched in the shadows along the side of the room. She looks a little pale and is a bit hunched over. Uncomfortable in her own skin. I feel for her, and I wonder if she is a bit socially awkward. Then I notice her cane. Oh, she must be that sick one. I heard some of the mums talking about her once. Her son is a playground troublemaker. I remember making a mental note to avoid adding him to the birthday party list. Apart from looking a little unsure, she doesn’t really look sick. I couldn’t remember what it was that was actually wrong with her. Something weird. Maybe she’s weird? I thought. She doesn’t usually come to these things, I wonder why she is even here tonight, if she is not even going to mingle? And then, in spite of myself, I am walking towards her, smiling and pulling up a chair alongside her. I really hope I am not going to get stuck here for long. I do find myself in these situations, don’t I? My hubby always rolls his eyes at me when I do this.
Talking with her isn’t easy. She is struggling to smile and make small talk. Her husband looks our way and sends me a thankful smile. Oh no. Now I am really stuck. But before too much longer, we have relaxed into a conversation. We talk about our children and the upcoming school play. There is some laughter and commiserations about the hassles of dealing with babysitters. Hard to find good ones these days. I find myself looking at her intently. There is a shadow of someone else around her eyes. Did I once know her, before she became ill? And even though I am internally telling myself not to, I ask her about how she got sick.
She seems hesitant to talk about it, but I settle in to listen. She exhales and begins to tell me her story. I was much like you, she began. And what she told me filled me with discomfort. She got a bad virus (who hasn’t at some point been felled by a virus?) but for her it was the start of something much worse. Her heart stopped working properly. An abrupt change in her ability to stand, dizziness, nausea, the loss of other functions. The list went on, she said, but she spared me the details. Everything, she said, that bodies do automatically. I began to imagine what that kind of broken body must be like to live in. But I didn’t want to imagine it for long. I’m ashamed to say it, but hearing her story made me wonder if I could handle what she was going through. Six years she’s been sick for. Almost the entire length of her son’s life. I didn’t think I could. My mind flashed through all the normal tasks of a normal day. No, there is no way I could manage being sick like she was. I wondered, briefly, how she did it. And then a desperation to be talking about anything else overcame me.
I thanked her for telling me all about it, I think I told her something like she was brave. I think I patted her hand. She thanked me for coming over, looking across towards the huddled groups around the bar and graciously giving me an out. Thank goodness, I thought, as I asked her if I could get her a drink. She asked for a water, so I went to get her one. When I returned her husband was back with her. She was looking paler. He had leaned in close to hear what she was saying. I unobtrusively put the water on the table near her knee and slunk away to my own husband’s side. His hand slipped into mine and I squeezed his back. I doubted if I could explain to him how glad I was to have the ordinary troubles of hair, makeup and babysitters, the general ‘difficulty’ of going to a school function. Then someone asked me about the woman I had been talking to, the one, you know, with the boy who was often causing trouble. I looked across to where she’d been sitting and she was gone. And I told them that she was really nice. Much like us. Only dealing with a whole lot more than most of us understood. I saw the smile flicker off the face of the asker. The inward groan. I didn’t like seeing my thoughts etched out so plainly on someone else’s face.
And then I was drawn into a fun conversation, ordering another wine and moving on. I shook off my unease about the things she said, the alternate realities I’d rather not consider. There was nothing I could do, was there? And she’d gone home. Really, there was no point in ruining a great night. These school parent functions are great once you get into the swing of things.
I do think of her every now and then. When I am organising a party list, or doing mother help at school. It might cross my mind briefly when I am loading groceries into the back of my car. Or sometimes, when I am looking at my face in the mirror. And like the first time, the thoughts come and then they go. Because who am I to think I have anything useful to offer? It’s difficult. It’s a juggle. And I move on.
It’s difficult. Attending these school parent functions. You’d think it would get easier, the more you do. But no! There’s all the pre-planning and resting up that I need to do for the ability to do one night out. Extra medication. Mental fortitude. And there will be the payback afterwards. Days crashed in bed. More wasted time while the tasks for the family mount and mount. I don’t get to many of these sorts of things, but I try to attend one or two a year. And I love the drive there, hand on my hubby’s knee. Feeling like we are on a real date, even just for the time in the car. The beauty of the city lights reflected on rain soaked streets. The privacy and togetherness of our car coccoon. Just us.
I didn’t manage to do my hair or nails, those things seem to have gone by the wayside. I did manage makeup. I check it in the passenger mirror. The woman looking back at me is puffy faced, tired and pale. I wonder where my real self is hiding. Somewhere on the other side of illness. I wonder if she is waiting for me there. If we will recognise one another. But there is so much for my husband and I to chat about while we make our way through the traffic that I am soon distracted from my own reflection. Any alone time together feels like we’ve rewound to the early days. I look across at his profile and marvel at how I still feel this way after so long. After so much water under the bridge. He’s a good man, my man. I wish he didn’t have the dead weight of my illness to carry with him everywhere he goes.
When we arrive, the difficulty of walking from the carpark to the venue takes it out of me. I send my husband into the throng and perch in the shadows of the room, hoping that no one will talk to me. Hoping that my hammering heart will slow to a calmer rhythm and the planes of the room stop warping and fading on the periphery of my vision. Hoping the nausea will subside so I can form words without retching. I want to be at home. I wish I could fast forward to the end of the function. Why am I even here, if I am not able to mingle? I see that my hubby is having an animated chat with someone and it brings me relief. Maybe if he talks to five or so people, we’ll be able to consider the job done and go home. I wonder why I push myself to be part of a group of people who don’t actually want to know about me, about us. I don’t know. But somehow, I know that I desperately want to be a part of this world, to know about them. I remember, in flashes of colour and animated laughter, what it felt like to be out with friends, drinking and talking about interesting things. So often these days my only conversations are about illness. With doctors, with other patients, with myself.
And then one of the mothers comes over to talk to me. She seems curious, and nice about it. It feels good to be able to explain why I am lurking in the shadows. I wonder if she can tell how much I long to stand and laugh in one of those sociable huddles. How I wish my son were more a part of things in the playground. And then, as fast as she arrived, she has gone. I am jealous of the ease with which she sways across to the bar in her incredible shoes. I feel the old uncomfortable conflict of opening up. My hubby comes back, he knows my best-before date has arrived. We make a move to go. I take a sip of the water she brought me and an unbidden sting in my eyes ushers me out the door.
I do think of her every now and then. When my son is left off another party list, or I can’t volunteer to help with a school event. Even when I am doing something as ordinary as filling in my online supermarket order. Or trying to find myself in the mirror. The thoughts come and then they go. Because who am I to think I have anything useful to offer? It’s difficult. It’s a juggle. And I move on.