Bad Day

I See Fire, Ed Sheeran, Youtube

Last week, for the

Redefining Disability Awareness Challenge,

I described a

Good Day.

In life, with the good inevitably come the bad.

This isn’t easy to write and may be hard for some to read. I apologize.

Having a disability is already an extra stressor and can bring on times of depression about life. I am thankful, I must say before I continue, that I do not have clinical depression on top of that. Not having that allows the waves of depression and the bad thoughts and days to be outnumbered by what I know is good and joyous about my life.

***

Describe a bad day:

I am listening to:

Lord of the Rings, The Complete Soundtrack, on YouTube

as I write this week’s Memoir Monday post about a bad day.

I do this to provide me with some background music, yes, but also to put things in perspective.

Of course I will be giving you a glimpse into what a bad day is like for me.

There are plenty of dark and despairing parts in Tolkien’s tales, if you are at all familiar with that world.

But there are also those bright, cheerful, and hopeful parts and the music reflects both as I write.

***

I wake up and right away there is darkness, the day is black, but not because I am totally blind and see nothing at all. I still have the little bit of sight I had yesterday and the day before and the day before that.

It’s one of those bad days. They come and they go.

I want to look at myself in the mirror and all I see is a vague outlines staring back at me.

I want to jump in my car and go somewhere: groceries, errands, to visit someone, just drive aimlessly away from the life I am trapped in.

Oh wait! I can’t!

I don’t drive and there is no car other than the one that others must drive me in. The driving I sometimes do in my dreams taunts me when I am awake.

You are no good. You are lesser than, disability, disabled, unable, not at all capable.

You are helpless and you should hide away from others because you can’t possibly fit in, not when you lack the one sense valued above the rest.

You are as much of a burden as they say. Who are they? You know, them. the ones who don’t want you around, as a reminder of those poor blind people who must have a terrible, deprived existence. It’s one people don’t want to look too deep into and you would do best to just stay out of the way.

Stay hidden. It’s for the best.

You are constantly in the way and a drain on others. You can’t possibly contribute in any meaningful way, so don’t even bother trying.

You stand out like a sore thumb and people stare. You can’t see it, of course, but they do because you make them so uncomfortable and they would rather not look, but they can’t look away.

I am a freak.

I push everyone away. Why do people leave?

My blindness. Yes. It must be that. In a way it’s an easy scapegoat.

I have no future and nothing to look forward to, nothing but a dark, black void.

Why do I even bother to hope for something more?

I will lose the rest of my sight and I will be alone with my darkness.

That is how this story will end, as if it’s already been written.

The End

***

Quote from Stephen Fry:

There comes a time when the blankness of the future is just so extreme, it’s like such a black wall of nothingness.

It’s just nothingness, the void, emptiness and it’s just horrible. It’s like contemplating a futureless future and so you just want to step out of it. the monstrosity of being alive overwhelms you.

***

Daniel Powter, Bad Day, on YouTube

Of course this is an extreme example. I have many more good days than bad and the bad days are more like bad moments. the thoughts, they come and they go just as fast.

Next Memoir Monday:

Describe your baseline, or an average day.

A Day in the Life

Last Monday I wrote about:

The Horse and the Bird.

To answer this week’s question for the:

Redefining Disability Awareness Challenge,

I will run through a typical day in my own life and you can judge for yourself what the answer to the following question is.

***

Q: Are your activities of daily living affected by disability? If you are comfortable, share a little bit of your daily routine.

A: I am not uncomfortable, but I just wouldn’t want to bore any of my kind readers, that’s all.

🙂

If you know me or how I do the little things, that fill up my day, then please feel free to read on with another of my many blog posts, such as this one:

Ripley’s Aquarium of Canada.

If you are at all curious how I cook, shop, or clean then please stay and read on …

To me my day is often full of repetitive tasks and common activities, all such as though I wouldn’t imagine anyone would be interested. However, in recent weeks I have spoke to people who have said that for people who can see, it’s the everyday tasks and how they are performed without sight, that are the most wondered about.

How do I brush my teeth? How do I do my laundry? How do I get dressed?

These are the things someone with sight, who can not imagine how they themselves would undertake such things. These are the questions I have received and that are often asked of someone with none.

To me they are simply the things we all must do to be presentable and to function in the world, but I am able to admit when I need help doing them or when having sight would make it easier to be able to perform them.

I wake up and I can not look out the window to check the weather for the day. I have a cat who needs the litter box changed and a dog who must be let out first thing. This gives me another reason to step out my door to check for air temperature, sun or lack-there-of, or if the deck is wet from a night’s rain.

I keep my shampoo and soap in a certain place in my shower and recognize the feel of the bottles by touch. It is, perhaps more necessary, to come up with systems for remembering which bottles are which and where I will be able to find them again the next day.

I use my fingers to squeeze out the toothpaste. I don’t spend hours on my hair or putting on makeup, but who knows how much time I would spend on these things like many girls do, if I could see my face in the mirror.

Mirror Image, a post about how I see myself without actually being able to see myself.

There are App’s for announcing the colours of my clothes, but I have a good memory and know my own outfits by heart by the shape of the neck line or the material the shirt is made of. I have collected tips on fashion from my sister and hope I go out into the world with at least my own acceptable style. I don’t walk out my door with my shirt on inside out or two different colour socks, not much more than anyone else anyway.

I pour my juice with a finger placed on the rim of my glass, stopping when the liquid hits it. With hot coffee this is done with extreme care. I cook my breakfast, lunch, and dinner with the utmost caution and diligence. I am extra nervous of burning myself on the stove, perhaps holding me back from cooking as many foods as some do, but I do not starve. Perhaps cooking is just not my thing. It is not everyone’s thing.

Shopping requires getting to the store, unless ordering from one of those grocery store sites online, often more expensive and somewhat lacking in available choices. This means I utilize my family’s help in getting there. Often families do their grocery shopping together, but when I do it I often feel like I am failing at going for my own independence.

There are customer service employees to be found in every grocery store who are there to help anyone who requests it. They would help me pick up anything I wanted, but I prefer to shop with someone who knows me and the food I enjoy. It makes trying to explain what I am looking for much much easier.

I have labels on my stove and microwave, allowing me to find each button and press the right one. These days burners are flat and difficult to feel, but luckily I still have one of the older stoves. Modern day progress isn’t always for the better.

Sometimes I play “guess what’s in the mystery can/jar” and I may lose. It’s a good thing I enjoy surprises from time to time.

🙂

I am extremely comfortable in my own house, where I know where everything is. When in my own house I can forget the uncertainty and unpredictability too often found in the rest of the world.

Of course even I move my own things and forget where I put them. Not having someone else in the house makes it inconveniently difficult to have anyone else to blame when I am at a loss for a particular shirt I wanted to wear or the last can of Diet Coke.

🙂

Who moved my…oh wait…yeah, that was me.

I use my tiny bit of remaining vision to sort the darks and lights. Again, my washer is marked with braille or tactile stickers. I have had a surprising lack of laundry disasters, except for one involving bleach and a pile of my sister’s favourite red clothes. Again, I ask her for her pardon on that.

I like to keep my things in the same place and to keep clutter out of my path. This is common sense and safety is important. Anytime I can prevent possible tripping, bruising, or other accidents I do.

Dusting, mopping, sweeping, and vacuuming are easy to put off when I could be reading or writing instead. Washing windows and cleaning bathrooms are not my idea of a good time. I don’t see the dust oftentimes and I already established I do not need a clear window to see what the weather is doing. I am not living in a spotless home and I am sure I have room for improvement. It can be easy to avoid these less than enjoyable chores when you don’t see each speck of dirt and every smudge.

I do love the smell of cleaner and laundry detergent. I like the spray mops and I use my hands in place of my eyes. This allows things to slip by me and a helpful eye never hurts. I like visitors and this keeps me constantly working at working at it, on the off chance that a visitor could come by by surprise.

🙂

I make my own bed and I wash my dishes after I eat. I even discover a spot on a plate or pan that an eye may have missed. In that case my sensitive sense of touch works to my advantage.

I don’t need the light on to find the bathroom or to get a drink of water at some ungodly hour of the night. I have survived through the day and I fall asleep knowing I did my best. We all must learn to adapt to new situations and to live in a way that works for us. I am no different.

Of course I am affected, but although I can never quite escape living a life without the benefit of sight, I make it work as best I can for me. When you realize that you can not run from something, you learn to embrace it. It even makes life more interesting at times.

***

Okay, so you asked for it and this post has ended up being longer than the previous ones. I am happy to answer any other question like it that you might have in the comments.

Next Monday:

Is your work or school life affected by disability? Describe some of these challenges.

Until then … Ask away.

IN YOUR FACE

Last Monday, for the

Redefining Disability Awareness Challenge,

I shared a wonderful post from my very own parents, which I called:

Literally.

Last week’s question was answered by my parents, from the perspective of raising not one, but two children with a disability. They will be back again next week with another thoughtful response, but this week it is my turn once more.

🙂

Week Three: Part A

Q: If you have a medical diagnosis, do you see yourself as having a disability? Why or why not?

A: I probably would not be here answering these questions if my answer were no.

🙂

I have had several of these in my lifetime. The main one was the LCA, see

Here.

Then there was the Senior-Loken Syndrome, which included the renal failure and scoliosis.

These, to say the least, made my teen years interesting ones.

I have had many different diagnosis suggestions from neurologists with the headaches and chronic pain I have dealt with over the last ten to fifteen years now. However, unlike the obvious medical signs that I am blind or that my kidneys stopped working or when an x-ray clearly showed signs of a curvature in the spine, chronic pain shows no signs that can be clearly and medically spotted.

All of this is true and yet, I can not let any of it weigh, drag, or generally bring me down for very long. Whether it’s one medically diagnosed disability or multiple, if it is at all possible to get on with the business of living, I would highly recommend doing so, to myself and anyone else out there.

I did not come up with the term and I do my best to deal with it in this society of labels.

I am so pleased to participate in this awareness challenge of disability because I know I must live life, not just with disability, but in spite of it. I have had it in some form all my life and this makes it very difficult to live in any sort of denial, not that I haven’t had my moments. It just becomes a part of you and something that it would do no good to refute. It’s not that it wouldn’t occur to me because I am human and I have my bad days, but I know I must take control of my own life, to take the power away from the cruelty and the harshness that living with the label of disability often causes.

Yes, the short answer is that I have disability as a part of my life and the person I am. This is the cold, hard, in-your-face reality of the situation. I look forward to getting further into the issues surrounding life with disability, with some of the questions I have yet to answer, in the weeks to come.

Check back next Monday for more.

Next week my two parents will be answering the following, Part B:

If you don’t have one, how do you view the concept of disability and the people in your life who have them?

***

Speaking of in-your-face.

🙂

With September being Chronic Pain Awareness Month I wanted to share here an initiative being organized by the ones fighting to lessen the stigma surrounding chronic pain and a new way to hopefully bring attention to this silent and invisible scourge.

I asked to do what I could to help migraine, headache, and chronic pain ambassador JP Summers, and this is what she had to say:

“Here is the information for the Pie Challenge. I hope we get some media attention for the sake of all of us that are tired of our condition not being considered severe.”

Please check out the links below to see what’s being done:

Twitter,

Facebook,

and

Website.

Of course this is a take on the:

Ice Bucket Challenge for ALS,

because every person has their own unique story of suffering and deserves to be heard and helped, whether it’s by way of ice cold water being poured over the head or a pie in the face.

Whatever works and get’s peoples’ attention, right?