Looking out for Martha

Martha makes a horrendous noise when she yawns. It is because she can’t get enough air into her lungs and this is the noise her body makes. It is terrifying to hear but what frightens Anne, her daughter, is that it has become an every day noise. When Martha made the noise today in the bathroom, Anne’s son ran from his room to check she was okay. Anne saw fear etched on his face, as he asked his Nan if he could help. She heard herself saying ‘Its okay love, Nan does that all the time’. She wondered when she became so immune to her mother’s illness, when did the pain she goes through on a daily basis become acceptable.

Martha was diagnosed with a lung disease 10 years ago. At that time they told her she had no time left, she was in such poor condition. Martha has defied the specialists and the disease in some way. Although she is in the later stages of the illness now, her amazing and powerful spirit is still fighting. As a family, they have had plenty of time to get used to the illness and know what Martha needs. The number one thing is love, but they also recognise and meet all her other needs.

The autoimmune disease Martha has affects so much of what the family does now. Winters are long and spent inside the home, as Martha cannot venture out in the cold. It’s not only the weather but also the fear of catching the winter viruses that imprisons Martha. She lives for the summer, warmth on her face and vitamin D for her bones. Anne feels her mother’s frustration during those winter months and wants to be able to make her happy in any way she can. Anne feels guilty that she can run around town and enjoy the fresh air but Martha always insists that she does.

It is not often Martha and Anne visit a café anymore, maybe only on hospital visits these days. But when they are in café and Martha has a coughing fit, Anne can see herself waving the waiting staff away when they attempt to help by bringing water. It is not that she is not grateful for their kindness but she knows it is not water her mother needs, coughing is what she does all day, every day. People and the germs all around are as dangerous to her autoimmune disease as anything else, so Anne attempts to keep them away and shield her mother. She has come to recognise the coughs and would know if her mum was in trouble, Anne hopes to god that’s the case anyway. Anne believes she must look like the daughter from hell to strangers, she doesn’t really care what she looks like to other people as long as what she does for her mum is right.

If Anne is honest, she has in fact always cared what she looks like to others. She has always wanted to be accepted and approved of, but she has also learnt to put these feelings aside for now. It is not about her at the moment, what is important is what she can do for her mum.

Martha is fiercely independent and when she goes to any of the many hospital appointments, she likes to go into her consultations on her own. Martha says there will come a time when she needs Anne with her, but until then she wants to be able to manage by herself. Anne understands this but it does not mean she doesn’t sit in the waiting room wanting the floor to swallow her up sometimes. She feels the looks and almost hears the thoughts of the people who witness her remaining seated while allowing her mother to struggle across the room trailing her oxygen cylinder. Anne wants to shout, ‘she won’t let me go with her’, but she wouldn’t dream of causing a scene. For now she needs to harness the same strength as her mother.

Oxygen

They delivered the new oxygen today.  As well as the small cylinders you have got used to, they delivered a concentrator, a large box that takes oxygen from the air. You didn’t want it, but it was necessary as you have required more and more oxygen to do the simple things you used not to think about.  You hated it, you said you felt like you were a dog on a lead being attached to the box wherever you went.  I tried to make light of it, look for the silver lining we usually find at difficult times, but it wasn’t easy today.  I said it only meant getting used to something different, that it would make life easier when you didn’t have to wait around for your oxygen to be delivered.  I reminded you of how you would start to get a little stressed and anxious if you ran low and this wouldn’t be a problem anymore now that the oxygen was on tap.

I felt helpless when I saw you were tearful.  It’s so easy for me, who can run around town in no time at all to tell you everything will be alright.  We know it won’t, you will need oxygen now for the rest of your life.

It’s spooky in a way that you had claustrophobia all your life, that the thought of not being able to breathe was your worst nightmare.  You have lived an exceptionally healthy life and end up with an incurable and hateful lung disease.   It’s like from childhood you subconsciously knew what was to come.  When I think of your illness I often think of the stories of you as a child, licking salt from the factory walls or wearing the old gas masks you told me about.

I took you for a drive today, I thought the sun being out would cheer you up and it did.  We drove down the coast a little to a town with some tearooms.  Finding a disability parking space wasn’t a problem now we have the badges.  I set up your cylinder on the trolley and off we went to attempt a walk.  We stopped for coffee and cake, it was lovely although a little on the generous side.  Walking back towards the car, you were very slow, you stopped, you had nothing left in you and had to sit on a bench for a while in the graveyard.  In setting up the oxygen, I had forgotten to turn the bloody thing on.  I felt awful, putting that stress on your poor body, another reminder of how healthy I am in comparison.

On the journey home, you said you realised now how awful it was for dogs to be on leads.  You’re nothing like a dog mum, however beautiful you think they are, there are no similarities.

You used the concentrator again tonight. I hope it gets easier to live with and you can feel a little happier in yourself.   I suggested you put the tubing over your shoulder so it would trail behind you and you wouldn’t trip.  There you go down the hall with the tube singing to yourself and me ‘over my shoulder goes one care, over my shoulder go two cares’ you’re amazing.