muttering in public

Today I was sitting in the car with Wolfgang my pup, our windows all the way down to prevent us from melting. I saw a six foot man with a protruding tummy coming down the street. He was wearing a polo shirt tucked thoroughly into faded navy track pants. The trackpants were pulled almost up to his chest, with the cords hanging out. I could see that he was talking to himself, and as he passed my window I caught what he was saying.

“My disability.”

Then there was silence. A few seconds later,

“My disability.”

Silence.

I just sat there feeling stunned and sad. I wished he had been singing to himself, or muttering about the beautiful weather – but he was pondering his and society’s perception of himself. I wanted to go and tell him that he was great just as he was, that he didn’t need to sweat it. I wished he didn’t even know he had a disability, that he could accept himself without a label.

I found it hard to forget him, hard to see him so internally disturbed by this view of himself. Then it was dawned on me that I was just like him. In my head, a hundred times a day I mutter,

“My disability.”

I say it when I wake up and face the day at home, and when I get weak cleaning the bathroom, when someone asks me what I do, and when I send another message saying ‘no’ or ‘less’.

I’m painfully acutely aware that I am abnormal, and that people aren’t into abnormal. I absolutely dread that moment of discovery in conversation: that I am disabled.

I wished most for the man not that he was able bodied {I do wish that too}, but that he could walk down the street unconcerned by difference or disability. I just wanted him to embrace being him without all the fear. I wish that for myself. I see all the ‘can'ts’ and ‘no longers’ and ‘abnormals’ and the thought that my life is less valuable than another’s is like a load of lead. Just imagine if the whole motley bunch of us mostly ailed humans stopped adding the requirement of seeming ‘normal’ and simulating ‘ideal’ to our diverse issues.

I think if I lived within the boundaries which allow me to function somewhat pain free, and let go of all the “Help, I don’t have a career!  Help, I’m a social failure!  Help, people must judge me because I can’t do things!” I’d stand a chance at less misery, more joy, more living. I want to live the life that I lead at peace with the path I am on. Enough with the muttering, more of the appreciating, loving, giving and receiving grace.   

words for wednesday {Page 14, being a Somebody}

“Like city dwellers who no longer notice the polluted air, we breathe in the atmosphere of ungrace unawares. As early as pre-school, and kindergarten we are tested and evaluated before being slotted into advanced, normal or slow track. Test papers come back with errors, not correct answers, highlighted. Ford Motor Company grades employees on a scale of 1 (clerks and secretaries) to 27 (chairman of the board). You must be at least Grade 9 to qualify for a parking space: Grade 13 brings with it such perks as a window, plants and an intercom system: Grade 16 offices come equipped with private bathrooms. Justice departments and mortgage companies cannot operate by grace. A sports franchise rewards those who complete passes, throw strikes, or make baskets, and has no place for those who fail. Fortune Magazine annually lists the five hundred richest: no one knows the names of the five hundred poorest.”

Philip Yancey, Grace

It’s not really surprising that I question my existence now that I am fully dependant, and meritless. I feel like a Nobody because every Somebody in our world has to earn their way to Somebodiness and I can’t anymore. I can't, and it doesn't feel good. I’ve always defined myself by my achievements, and now that I can’t achieve, I wonder where on earth I fit in?

But then there’s this bizarre and wonderful grace thing, where things aren’t earned or strictly fair. I have a meagre grasp of it. I just know that grace doesn’t care about what I can do, and that we need more grace in our world because there’s enough ungrace. Grace seems to me a lot like unconditional love.

I was looking through HONY and a wizened face appeared, a man playing a wooden flute. The music drew me in, but then I read what the man had said and it seemed to sum up every confused thought I have had regarding me and how I fit into the world now that I am ill.

“Don’t look to other people for validation. Your birth was your validation.”

Human of New York

I was born a little red squishy 7 lbs of girl. I was loved for just being a human being, even when Mum first discovered that I was in her womb, barely formed, barely functional. I didn’t acquire my validity to exist once I’d done something impressive, or sacrificial, or beautiful. I am not valid because of what I do - but because I was born and I make up one of the millions of souls who exist because they were created.

“Your eyes saw my unformed substance;

in your book were written, ever one of them,

the days that were formed for me,

when as yet there was none of them.”

Ps 139

I only discovered Humans of New York a couple of weeks ago, but it was love at first sight and every sight since.

I am overwhelmed by the beauty and uniqueness of every soul captured. When I trawl through the photos and hilarious or sobering quotes I feel less alone because there are thousands of humans going through highs and lows simultaneously. I feel community.

  

damned if I do, damned if I don't

This is the damned if I do, damned if I don’t illness. It feels like that, anyway.

When you are raised to do your best always, work diligently, and provide for yourself, the transition into life with chronic illness is incredibly difficult. It is a humbling sometimes humiliating transition. These ingrained values and expectations battle violently with the new realisation that self-care is vital to recovery. 

At times, the internal struggle sends me mad and robs my freedom. There is little spontaneity and freedom in this life, as everything is carefully evaluated and planned for survival. I cry for the days where I could do something which didn’t cost me something else.

Activity = illness 

Rest = feeling lazy, depressed, unfulfilled

So you say, it’s simple, just do a little bit. Enough to feel like you’re keeping busy, but little enough to keep in decent health.

That would be perfect. But life just doesn’t come in bite sized portions: houses need cleaning, meals need cooking, people need seeing, events need attending, and every single time, there’s a cost to do it, and a cost to refrain.

When I leave the dishes in the sink for Ben to do when he comes home from a day at work, the cost to me is emotional. I hate my vulnerability, the burden I feel that I am, the guilt of staying home all day and pursuing only leisurely activities. Tears of frustration burn in my eyes as think how wrong it is that Ben has to do so much. 

When I make the decision the other way and do the washing and the vaccuming, I am tired and sore and need him to bring me dinner. I feel like I’ve lost again.

I feel like I’m damned if I see the friend and endure the resultant pain, and damned if I don’t because of the time lapse and guilt. If I cancel my appointment I feel relief, but also confusion as to whether I was right to do so. I accuse myself when I stay home from an event and end up feeling well, and when I go to an event and crash significantly.

Ben and I are invited out to catch up with old friends. Battle breaks out in my heart instantly. Should we go even though the relationship is unsustainable in the long term (due to family and more essential friendships), or turn down the thoughtful offer and risk hurting them? After great debate, a message of decline is drafted. It is based on a phrase I try to live by:  speak the truth with love. 

Thanks so much for your kind offer. We would have loved to see you, but to manage Danielle’s chronic fatigue syndrome we really have pace, and limit relationships...

As the message is sent off, I feel the typical wave of unsureness. How do I know that I’ve made the right decision? Maybe I’m just a selfish, lazy, hyperchondriac – I wonder, for the millionth time in a week. With so many decisions to make every day, I become weary and confused. 

Often the replies to my decline message show little empathy about how much we struggle with this situation too, and are ‘that’s ok’ in nature. The sting is milder each time, but it’s never pleasant. 

Most of the time, I don’t know whether I am being selfish or wise. It’s an endless conundrum. How little should I do to preserve my health? How much should I give out to the detriment of my body? And how will my body react to each thing? What is the best thing to do?

I don’t yet have the answers to the mental terrors of managing an illness. I know it will become clearer to me at some point, and if you have a tip for me, I would be so grateful for it.

All I know is that not everything is a right or wrong, and perhaps even the words wise or unwise are too strong. There is much grace for the things that matter. I can never know the consequences, and I can never micro-manage my life to perfection. I think the best thing is to stop second guessing and revisiting decisions. It’s the phrase of our decade and said too often, but it means something to me: Live in the moment.

Or as this blogger so beautifully shared,

“When I put my whole heart into where I am in living each moment, I will find (a lot more) peace and joy.”

needing a hole in the ground

I woke up at 9.30 am, next to my dog, who had taken my man’s side of the bed. Today was my day off the gym, and I felt very much inclined to take it easy and embrace relaxation and healing. I decided right then and there that I was going to have a pyjama day. It was the first pyjama day I’d had in months and months. I leisurely spent my morning sewing, writing an email and ignoring the piles of dishes, clothes on the floor and general household chaos. Goodness, I’m good at not doing housework now.

3.00 pm arrived and I felt that great bodily weariness which often surrounds me at this time of day. It didn’t seem wise to push through it considering I’m meant to be look after my health post-move. I decided to snuggle up on the couch for an hour’s recuperation. 

3.24 pm. My eyes are flung open by the distinct sound of people coming up the drive. The first thought that flashes into my mind is, “It’s the Jehovah Witnesses.”

But almost instantly this thought is replaced with another, more accurate, more terrifying one.

“No it’s not. IT’S FRIDAY AFTERNOON, AND THIS IS THE AGENT COME TO SHOW PEOPLE THROUGH THE HOUSE. Craaaaaap.” 

My heart is suddenly pumping like a mad thing, and I feel all shaky and weak and gushing with something they call adrenalin. I am standing up now, in my pink dressing gown, with my overly excited Wolfgang barking like crazy. They are just approaching the porch.

I am not meant to be in the house at all, neither is Wolfgang, and the house is not fit to be seen, and I’m in pyjamas and....

I open the door before the real estate agent gets a chance to unlock it with her keys.

“I am soo sorry! I completely forgot. Can you just give me two minutes?” I say in a manufactured- calm voice, as I just peak my head out of the door in the hopes that she won’t see my pink dressing gown.

She graciously grants my request, and I close the front door as I run full pace into my bedroom, skidding along the wooden floors. The bedroom floor is covered, as always, in my clothes. I tear off my pyjamas and dash on my track pants. I start wildly picking up my clothes and stuffing them under the doona, armful at a time. What can I do, when there is no cupboard to jam them in? It looks so she-just-hid-her-clothes-in-the-bed, so lumpy, so obvious.

The sewing room...well, I just hope with all of me they don’t walk in there, because they will come out with sewing pins stuck in their feet.

I run outside to where Wolfgang is, and in my sweetest voice I coax him into putting on his leash. Then I skid back to the front door, wondering how long my re-dressing and bed-stuffing took. I’m pretty sure it can’t have been more than half a second.  

I open the door again. This time I have opened the door a lot wider as I’m not trying to hide my dressing gown. I glance down with embarrassment to see the cords of my track pants hanging out, just a little reminder of my panicked dressing. I apologise again with genuine I’m-so-sorry tones in my voice, and tell her that I haven’t been well so it quite slipped my mind. She replies that ‘there has been a lot of that going round’ and I gladly take this illusion to my having a virus. Four year virus, what of it.

After all this turmoil she says that the potential buyers have just looked at the backyard and it’s not what they were hoping for. They don’t want to look through the house after all. I close the door.

I’m still flowing with nervous energy. I’m quivering inside, and feeling a big looming dose of anxiety coming my way. I also feel some escalating self-hatred for forgetting an appointment. And then I look at my chalkboard, which this week says, 

“Grace for the things that matter.”

It’s something that I have been thinking about a lot lately. It never works when I say to myself, “It doesn’t matter, don’t worry about it!” Because, all of me disagrees. All of me says, “It does matter!” 

Picture source

What I’m learning is that I cannot be perfect. I can’t remember perfectly, or be the perfect wife, or the perfect host, or flautist, or friend, or writer...and that is ok, because there is grace and understanding, from God, from me, and often from others too. Life is important, and flute, and relationships, and the house, and my arrangements with the real estate agent are important. It’s a lie to say they’re not. But there is grace. So even though they do matter, I don’t have to feel anxious when they don’t go quite right.

There is grace for the things that matter. 

And so I applied some grace to myself, and got over it all faster than I have ever gotten over an embarrassing mistake before.