humbled and humiliated

When I went outside to embark on some weed termination this morning, the sun was shining. And after serious burns from a coconut oil mishap last summer {a story for another day}, I am anxious to avoid further torturing my skin. You see, it is quite likely I will perish from skin cancer due to alternative sunscreen experimentation. I applied sunscreen.

I pulled and tugged the little buggers with enthusiasm. After a while I started feeling faint and weak, so I took my sweaty hands out of my gloves and went inside for a rest. It was ten minutes since I’d started.

It was now time for me to feel extreme frustration, and humiliation. I tried to resist expletives. I hurled rhetorical questions instead.  What kind of a body is this?  What kind of an apology for a human being am I? Will I ever be independent again?

---------------------

Yesterday I went to see my friend try on charming wedding dresses, as she is soon to be married and I am her bridesmaid. She and the other bridesmaid travelled 1.5 hours to do the shopping where I live. In each of the bridal stores, there were plush couches by the change room especially for the bride’s support team. I sank into them, I slouched in. The lady in one shop was telling us how we had to the bride’s servants on the wedding day and I reflected that I was the worst ‘maid’ one could ever choose. A few minutes in to the sitting-watching-exclaming process, I was feeling ill. The lovely bridesmaid asked me a few times if I was tired, and I agreed. Her concern was so refreshing, but oh my heart, ‘tired’ is the biggest understatement I have ever heard.

By the time we reached the last shop I was closing my eyes each time she was behind the curtain to change into a new dress. Please may this one take a long time to get into, I prayed. The curtain would open in a flash, and I would rally to open my eye lids and sit. The attentive bridesmaid next to me would exclaim, “Wow, you look amazing”, and I would slump and literally grunt. That night the bride sent me a message thanking me profusely for my support.   

--------------------

   

 On the weekend, I had the honour of being my younger brother’s grooms woman. I didn’t help with the wedding, nor did I attend the rehearsal, or the hen’s afternoon. In fact, the only thing I did was arrive wearing my prescribed dress, take the bouquet handed to me, and stand up the front near my brother as he waited for, and then married his bride. He could have chosen any friend, but he chose his dysfunctional sister.

These are the times I feel humbled. Love hits hard when you haven’t earned it. I feel no legitimacy because of what I have done, because I haven’t the ability to do anything. Culture says it’s about ‘do’. It has for centuries. Hitler killed the disabled and elderly en masse, along with other minority groups. Those with disabilities have been hidden away as an embarrassment in homes and institutions. Now we can test for disability during pregnancy and terminate if it seems best.

Early on, I held this strong view of achievement based value. I felt humiliated if people had to help me, or modify things for me. I would stoically attend the wedding rehearsal, and refuse help because I didn't want to feel like less of a person. I still feel this way, when I face my inability to go shopping or weed my own garden.  

But slowly I begin to gratefully accept love. This is only possible as I delicately grasp the concept of not being valued or defined by what I do. If my identity is in what I do, then I have lost my very self.  I begin to think that who I am matters more than what I do, and it’s my friends and family who are teaching me this. 

My brother telling me what to do, as I missed the rehearsal.
My husband being my support team, as usual.
My eyes are closed, nothing new.

believe me {a film trailer}

I tear up every time I watch this trailer. Every single time.
I feel raw after watching it, because it is my story, my siblings' story, my friends' story.


Canary in a Coal Mine 




I'm backing this project so that they will have the funds to create a full length film. Imagine thousands of people seeing this and believing this?!

More:
http://www.kickstarter.com/projects/959776320/canary-in-a-coal-mine

a kiss and a cup of tea

1956, animals used as part of medical therapy

2013, my medical therapy

Pain and frustration accompany most of my days at the moment, usually en masse. But there are always flickers of beauty and joy, even on the days where I don’t think I can continue if this illness lingers any longer.

It comes in the form of a letter, a new thought, a kiss, a doggy snuggle, a piece of cake.

Today {a lowly day} was spent in bed, but Wolfie did extra cute things, and when I was strong enough to lift a tea cup, it tasted divine, and the clouds outside my window glided entertainingly. 

Sometimes I view my home as my prison. Every time I am asked why I don’t work or study I am reminded that staying home is not a life, in our society. But the journal below reminded me of all the terribly wonderful moments which happen right here in these four sometimes oppressive walls. 

Source

normal people

This morning I arrived at the animal shelter for my volunteering in the cattery, secretly wishing I had preferenced the ‘doggery’ on my form.  I signed on at 10.45 am because I’m not good with ungodly hours of the morning (10 am), and glanced above to see the times that my volunteer colleagues would sign off for the day.

4.30 pm.

Ok. That’s fine, I thought. Don’t worry about their awesomeness.  

When I first got to the cattery I had to control the dry-wretch reflex. They say it takes eight minutes to adjust to a smell, but they didn’t test this in a cattery.  Lucky I am a pro mouth-breather, a technique my cloth nappy cleaning mum taught me long ago. Once I’d adjusted to nose blocking, I began my cleaning tasks and made sure to frequently pass the quarters housing a mama cat with her day old offspring. I might have passed it ten times because as you know from my last post, oggling baby furries is very therapeutic. It was squeal worthy, the way they were suckling their mum.

So, I was happily working away feeling ‘normal’, as in, not in pain or feeling deathly fatigued.  I loved that I was pain free as I worked; it made me feel all quivery with hope.  Maybe this will be so manageable that I will barely feel the effects afterwards? I thought. After what felt like a very long time, my supervisor was going to have her tea break. I called it ‘a day’ and returned to the sign off sheet.

I wrote: 12.00pm

As I drove home I just thought, ‘How?! How on earth can someone go back to work after their tea break? Is that even humanly possible?’

Instead of feeling joy that I’d managed to do a solid hour and a quarter of work, I felt total deflation. How can it be that these people are so mind bogglingly robust? How can it be that my body is so screwed up that even my ‘I’m recovering’ strength is a weak shadow of normal people?

When I got home, I sat on the couch. I kept sitting there for hours, feeling physically pummelled. 

Of course, the proper response would be:  But, it’s wonderful that you did an hour! Don’t compare yourself to others, but be glad that you have improved so much that you can manage to do that much.

And I would say: Yes, I know. That is the perfect answer. That is so true.

But.  Proper feelings aside, I am confronted by the reality of life outside my lounge. I had lost track of the lives around me. I am like an elderly person who plods through their quiet life yet considers it hectic.

Outside my sheltered existence, people are working all day long, five days a week. They are even looking after their homes, exercising and socialising {ie. my entire existence} in their spare time.

I know. It’s beyond.

I now realise why this was my mantra in my first year of illness:

God grant me the serenity

to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

an impractical plan to avoid death

If you read my blog regularly you will know that I only really cover two topics:

-         -    being sick

-         -    being sick of moving house

And so this post will cover these themes in detail, because I’m sick and we’re moving house again and I’m sick of moving house and moving house makes me sick.

The realestate agent told us last week that we have to vacate, and to say that I took the news well would be untrue. I was a neurotic psychotic mess, crying with despair one minute and laughing uncontrollably the next. I said to Ben that this is what I will be like when I am pregnant, for nine whole months. It was dark, but I think he looked frightened.

Last time I felt like I was going to die. I know that sounds melodramatic, but illness is a common pre-death state and one never knows if one’s lifeless body will revive. As we packed our dirty mop and dirty dog into the car ready for the four hour drive to our new home I started to get stabbing pains in my head. They were ‘is-this-an-aneurism?’ pains, and we wondered if this was a hospital emergency. Mercifully they didn’t persist for as many months as the severe malaise, and I didn’t die.

Moving house and chronic illness are a toxic combination. This particular life event has a 100% record for undoing my health progress significantly. Three doses of this in one calendar year is not recommended.

Two moves ago, Ben had this great impractical plan to send me away while he moved house. I rejected this idea instantly, on two grounds.

1. He needed me.
2. I didn’t want others to have to help us if I wasn’t pulling my weight.

One move ago, Ben suggested his impractical plan again. I rejected it because he needed me as we were living in a remote town with few friends.

This time, Ben suggested his plan again and I have gratefully agreed to it.

I am either getting less conscientious, less proud, or more fearful of relapse. After psychoanalysing myself, I feel it’s a muddy mixture of all three.

It’s a bit of a social norm and pride issue, the whole being- there-to-move-your-own-house thing. I used to think it was an outrageous idea to ask other people to move house for me when I was ‘perfectly’ capable. All of next month’s adrenalin wildly gushes to my aid on moving day enabling me to fool even myself of my suitability for the job. But once I have collapsed into bed it is difficult to depart it anytime soon.

I still have to hunt, inspect, apply, pack, and clean beforehand, but my body seems more approving of quiet regular efforts than short sharp ejaculations.

At this point I am no longer hysterical, which is a relief for my small family. Wolfie kept stealing wet tissues and eating them, and he would have become constipated had my anguish persisted. I feel what I think is peace and acceptance, but it could be numbness. I have just discovered that looking at deathly cute baby animals has great emotional benefits, and I feel quite a connection to this kitten.  

Source

define patience.

I don’t even know what patience is.

Is it endurance? Because endurance sounds like being stuck in the mud, but choosing not to kill yourself. It’s grit-your-teeth and get through. Perseverance feels a little more determined than endurance to me. I think it has an end in sight. Patience sounds angelic, peaceful.   

I have endured 5 years. Maybe I’ve even persevered because I’ve always believed there is a purpose to suffering, however invisible.  But I don’t think that just getting to the end of one day and then repeating counts as patience.  

the dictionary definition confirms my suspicions.

Pa – tient

adj.

 Bearing or enduring pain, difficulty, provocation, or annoyance with calmness.

 With calmness. 

The word used for ‘enduring pain with calmness’, and ‘person under medical care’ is the same. But I am the latter, not the former.

I have half hour stints of illumination where I see eternity stretching out and grasp how these moments now are just a breath. I feel calm, at peace with waiting.

And then I have weeks of terror as I picture myself still homebound, still limited in five years time and how I can barely face the continuance of life in this dysfunctional body. I choose again to only take today, but one second later I’m wondering about the future. Then I remember that patience is the key, but I don’t even know what patience is because I’m not sure I’ve ever felt it. Or maybe it’s not a feeling, it’s an action.

Maybe patience is deciding not to commit suicide, deciding not to cling to old plans and dreams, trusting that each day you will be carried through and can rest in God’s unfathomable, unsearchable ways.

My ramblings may sound depressed. But I’m feeling neither depressed nor anxious. These are just my muddy thoughts, the ones that hang in my house while other people are occupied with work or studies. I have hours to wander through them. 

Many people in unwell bodies seek counselling, because the thoughts which were swiftly stifled by fast paced life unravel. It’s not hard to avoid silence because we can put our ipods in, re-read the updates in our newsfeed, find a book, blog, beverage. We pass the time by incessant stimulation so we can avoid truth. But the truth is that I need to wait.