“I suppose that every one of us hopes secretly for immortality; to leave, I mean, a name behind him which will live forever in this world, whatever he may be doing, himself, in the next.”
—A. A. Milne.
A lot of emotional moments this week and in this run-up to the Christmas season. I can feel it, an energy of sorts.
In the meantime though, I’m going to allow myself to coast through the next month or so because I am already feeling the pressure of the coming year, to make it everything this one was…and more.
My Misadventures issue on store shelf.
So, I have some projects on the go, sure, but I want to enjoy the final weeks of this momentous year before they are gone.
I am thankful for the struggle of writing that keeps me thinking and learning and growing and moving.
This novel thing is harder than I realized, but I don’t stop. I research and learn so I can keep on writing.
I don’t ever really get writer’s block. There is always so much to discover and share.
I have plans and goals to conquer.
I am thankful for perhaps smaller groups but new people still showing up amongst them.
Our writer’s group lost a few this week because of illness and other things, but I walked in and was unexpectedly met by a new voice. A man from New Zealand came to check out what our little writer’s circle was all about.
It helps. I had someone in the group read something I’ve been working on, out loud to everyone, and I received interesting feedback from them and someone new helps with a fresh perspective.
I hope he returns. All the different life experiences in our group can only be a benefit.
I am thankful that I haven’t given up on the violin and my mastery of it.
The challenge continues, won’t go away because it is something one must keep working on. I won’t master playing such an instrument, not in a year and not in two. I know it feels like a long road, but I am working and developing parts of my brain I didn’t know I had.
Seriously, this lesson I felt energized and wiped out, all at once. I think that’s a sign that I am right where I am supposed to be with it.
I am thankful for two Foundation of the Blind meetings in one week.
I started with the US NFB ((National Federation of the Blind) and those few months of being a part of their organization (VisionAware) has given me some idea of what to expect with this new challenge of the Canadian CFB.
I listened in on the AFB call on Tuesday and the CFB on Thursday.
We had a guest speaker at ours. We are working to get a new national system of sharing books and other reading materials in libraries all across Canada and I was super emotional about it.
I love the library, but I feel like I feel when I am in a bookstore. I am surrounded by the things I love most in the world…and yet, I can’t access most of it like everyone else.
I hope I can be a part of changing that, for myself and many others.
I am thankful for a chance to write about my chronic pain journey.
This is one of those not-a-super-hero movies that people might not know about or care to see, but I think we need more like it.
I am thankful for seeing things (like biographical movies) at the moment I am meant to see them.
I love biography because it tells the story of a person’s life. Every person has a story.
I am trying to write a novel about life for everyday people in Europe and such, during the two world wars that dominated the 20th century. It felt like a strange bookend. I think it helped me put some thoughts together though.
I am thankful for a simple fix for my phone from my handy techy brother.
It suddenly froze up on me and went mostly quiet. I need it to talk to me.
So, instead of feeling stuck and being about to take it to an Apple store, my brother thought of another way to reset a phone. I tried it and it worked.
I am thankful for another newly discovered cover to a song I already know and love.
“We wanted to make a record with more lyrical depth”.
Bryan Adams told Rolling Stone Magazine.
Sounds like the perfect place for:
This is a song from the album of that same name, which was released on my brother’s birthday, the day and year he was born, and my brother’s name is the same but just not spelled that way.
What a coincidence.
***
Life – thin as a thread Sometimes you’re lucky Sometimes you’re better off dead
Your first breath is taken and in to the world you are cast You long for tomorrow while living each day as your last
Well I know what your heart desires But you can’t take it with you Into the fire
Now you’ve done all you can Your life’s at the crossroads You watch as it slips through your hands
So stand on the mountain and shout in vain at the sky But nobody hears you – the words only echo inside Oh shelter the flame – it may expire Risin’ up from the ashes Into the fire
Just hold on to your life down to the wire Oh out from the dragon’s jaws Into the fire
There’s a moment in every man’s life When he must decide what is wrong and what’s right
You could wait for your dreams to come true But time has no mercy Time won’t stand still for you
Well I know what your heart desires Crawlin’ out from the wreckage Into the fire
Here I go…into the fire I know…what your heart desires
Bryan Adams, singer/song writer from Canada, may not be known to all. His biggest hit to date was likely “Summer of ’69” but it’s “Into The Fire” the song that first struck me when I heard it on my brother’s video tape of Bryan Adams music videos.
We used to watch that video of videos over and over again, when we were growing up. My brother’s musical tastes have moved on since the 90s.
Bryan Adams recorded the entire album in his recording studio, in his own Vancouver home, by the sea. It was known as Cliffhanger. This I never likely would have learned, if I hadn’t gone to do a little extra research for this prompt. So glad I did.
The raw lyrics in this song are shown above, but to me I remember his face moving forward to the mic and away again, once a line had been sung. The background was dark enough behind him that I could see this when we watched throughout the 90s. The image of “into the fire” caught my attention, even then. It illustrates that life is hard. It can be painful. It made me pensive and it makes me cry.
“Watching the news in the evening is a bit like being on an emotional Tilt-aWhirl. “Isis now sets people on fire.” “Harper Lee has a new book out!” “Some oddballs are bringing measles back because they’re scared of autism, which is a bit like saying I’m worried about birthday candles, so let’s start a forest fire.” “It’s going to be gorgeous this weekend!” “Look, a politician being deliberately rude.” “And also, look at these adorable puppies!” My limbic system does not work that fast!”
–JEG
***
From Harper Lee to Stephen Harper.
Another one of these “In The News” posts, two weeks in a row, but this one is a special edition, not my favourite topics, but definitely in the news here.
I read so many awful, nasty comments in the Facebook post from a local college. The question of refugees, Syrian and other, was being debated. It was shockingly sad to hear some of the statements people were making.
What would I do if I had a home no more and had to leave? What would I want?
I did one project, in high school, about the immigration process. I have no clue, being born a Canadian, what it takes to become one.
Is Stephen Harper pushing a cynical agenda, a lot of prejudice against any specific group of people? Could anybody be so wrong as to vilify any whole group of people for the actions of the few? Are there those living here who don’t feel safe, feel wanted, feel accepted?
I knew very little about much when 9/11 happened. I don’t see how bad it’s said to have gotten since. That’s not my experience, but I know how important it is to feel like a part of one’s country, society, treated like a real person who matters.
“It was great to be in London with hundreds of enthusiastic Conservatives last night. People here want lower taxes, balanced budgets, and more good Canadian jobs. They’re voting Conservative on October 19th. Will you be doing the same?”
–Stephen Harper
Canada’s Prime Minister, Stephen Harper, has been leading Canada for, what seems like forever to me now.
Does that mean it is time for a change?
Research. Educate. Check the facts. Pay attention to your gut. What are the facts anyway?
I have felt an unease, a slide, a nagging in the pit of my stomach these last few years. I don’t think I like what’s happened to my country, the direction we’ve been led in, but perhaps I wouldn’t have been happy before that and I just wasn’t paying much attention.
I’m told Harper looks so staged when he speaks. He won’t allow for questions. He won’t answer, won’t address.
What’s going on with the environment? What is our stance on military issues, fighting, peace?
Harper’s talk is always about budgets and other boring things. Okay, so they are necessary for the running of any country, but I know very little about them. I try to educate myself, watch the news, but read a lot, honestly, on Facebook. Articles are posted there and I read about how other Canadians live and the concerns they’re having.
His threats are all fear based. I hate that. The other guys, Trudeau or Mulcair, they will screw our country up, Harper and all Conservatives keep saying.
Vote for him or they will raise taxes. Vote for him or spending will become out of control. We wouldn’t want that, right? What sane person would want that? Of course. No brainer?
I hear this again and again. I never hear him talk about the health of the environment. I never hear any feeling in his voice. Do I truly believe that he cares at all? Would anyone else, anyone, do a worse job than he’s done? Could it get any worse? How bad is it really?
Promises. Promises. Promises. I am tired of broken promises. I don’t want to feel invisible anymore.
The US has the Americans With Disabilities Act. Canada has the Charter of Rights and Freedoms, but I am looking or feeling for more of this. It is a big concern for me, even if many Canadians are more worried about taxes.
The rich, middle-class, poor. Conservative, Liberal, NDP, Green Party…so much to keep up with and keep track of.
Who do I want to run Canada? Who do I vote for and do I only feel as strongly as I do because that is how I was raised? Hmmm.
How do people pick up their beliefs? I wonder all of this as the next federal election is coming in a few short days. I want to vote, make the right choice, and see it make a difference. Is this all possible?
These are some of the questions I have been pondering lately, in the run-up to October 19th.
Re-elect Stephen Harper? Vote Liberal and Justin Trudeau or NDP and Tom Mulcair?
I voted, for the first time, back in the last election. I have done it a few times only. I didn’t exercise my right to vote, as a Canadian citizen, up until recently.
I know why I didn’t vote before that. It’s the same reason many people don’t.
Oh, I can’t possibly make the slightest bit of difference. I hate politics. I don’t know who to vote fore, so why bother, casting a vote for someone I don’t even really like?
I said all of these to myself. It is true that I hate politics.
It’s rhetoric. It’s attack ads. It’s making false promises, only to not come through with them after being elected. I loath it all.
I guess I wish we didn’t have to deal with it, but there are worse things, like not having the ability to vote at all. I tell myself this now, in moments of pure annoyance, and I say to myself that I’m damn lucky to live in Canada, even with the parts I dislike. I should be grateful and thankful and I should vote, just because I can.
So that old question, that I’ve struggled with, has been resolved in my mind. The next question, after the why, is the whom?
“Nice hair though.”
This has been a favourite line of Conservative attack ads against Justin Trudeau, along with the pronouncement that he’s just not ready yet.
I don’t know how anybody could be ready to run a country.
Do I vote for the liberals? NDP?
I ask my dad what he thinks. He tries to explain about the local politician in our area, which has been Conservative for a while. I grow weary of politics, but I must become more informed.
Minority government. Majority government. And my mind begins to drift. Blah blah blah.
I wish I had more interest in these things, but I honestly begin to doze. Politics, I can’t grow up and get away from the feeling of boredom I have always felt at thinking about government and all of its proceedings.
But then I listen to my father’s passion when he speaks of the country his parents came to, all those years ago, to start a new life. They gave him one, made one for him and his brothers. I truly believe hearing the passionate tone of my father, to understand what he cares about seeing for Canada, has been good for me. It’s taught me to figure out what I feel strongly and passionately about too. He’s shown me the importance of paying attention to how I feel and what my heart tells me is right.
I wonder how much family has influenced my thinking, but at some point we must all decide for ourselves what we believe.
I know what I truly think and feel, somewhere deep down, in my gut, I know. So why then do I still question it?
I know I want protection of our resources, our wild life, our oceans. Just the word “oil” has begun to leave a bad, you might even say an oily taste in my mouth.
🙂
I know I want freedom, to remain the welcoming people we Canadians like to think we are…to feel like we are accepting of all races, cultures, and religions.
People are going on about their discomfort with the niqab. It doesn’t affect me. I wonder what it matters to anyone else. I can’t see the coverings Muslims wear. Why do we fear this? We do not understand. It’s a sign of oppression, as we’ve been told, hear about in extreme cases that make the news.
Can we sit down and talk to those people, those women, to find out if they are happy. Do they have good lives? Are they afraid?
Islam and the Muslim religion are the targets in our world today, not only here in Canada, as we all know.
Culture and belief systems are powerful things. I don’t see to judge. Being blind helps me with that.
“This is Canada. If they don’t like it, they can go back to where they came from.”
This is something said repeatedly, at nauseam. I want us all to live our lives how we want, as long as that doesn’t include harming others. Why is that so complicated?
Instead, again there’s only more separation, more division, more one side against another. I want to feel like this isn’t always the case in Canada.
Fear of terrorism is real, but how much? How afraid should I really be that my safe home could ever see the kind of danger other parts of the world see? Do I fear or do I remain rational, find compassion, believing in a just and peaceful world?
Most people are good, only want to be left alone, to live their lives. Why must we make it more than that?
Okay, so after talking about all these things, what answers have I really found? What conclusions have I actually reached? Where do I stand?
I must go now and stop reading the upsetting things being said, the nasty back-and-forth comments on Facebook posts about who should run Canada after Monday, and move no to more important things, things that feel hopeful and positive. This afternoon’s game, the Toronto Blue Jays against the Texas Rangers. It’s all up to Toronto now.
All I know is I feel better when I hear how hyped people around here are. The impassioned back-and-forth of politics giving way to the pride in our only MLB team.
What is it about sports, a baseball team, a game that makes us all feel so energized?
I wonder, as I’m watching. I feel the excited tension in the pit of my stomach, a nervous energy, but a quickening of my pulse, my heartbeat. It’s just a game of course, but the feeling is contagious.
Of course there are those little funny things that make the game extra fun.
Not such a big deal. He didn’t know. He didn’t know I spent more time, as a child, not playing baseball because of my visual impairment, but playing around a baseball diamond. My sister, my brother, my parents all played. He didn’t know. Made a silly comment and suddenly Twitter was buzzing.
I focus on the positivity I get from my mom. They can win this. It’s possible.
As Scarlet O’Hara mused, in Gone with the Wind: I will go back to thinking about politics and the important issues of the day, in the news, tomorrow.
Indeed Sheryl, indeed.
Oh no! Will she sue me for using this song in my post, if she doesn’t agree with my political views? Hope she doesn’t see this.
Q: How has medical treatment and technology changed in your lifetime?
A: Blindness is not life threatening. Whether I was born in 2015, 1985, or 1905 – my life would be much different, without a lot of the modern technology I take for granted, but I would have survived.
I have seen an amazing eruption of invention for the technologies I depend on so very much, all within my lifetime of the past thirty-one years.
There is no cure for my sort of blindness. I try to stay away from fad ideas and don’t let myself hope for sight in my lifetime, but then I visit my eye doctor and he assumes I am up on the latest in gene therapies.
I am not.
He said the testing of gene therapy is coming along, which gives me hope for the future.
I didn’t have parents who rushed me all over the world, since discovering my blindness in the eighties, searching for desperate cures. I have lived my life, for the first several years, not really thinking of blindness in any medical terms at all. It was simply a part of me and my brother’s lives, a part of our family’s uniqueness.
I am glad for prednisone. It saved me from going completely blind back in the late nineties, I am sure of it.
In the eighties, technology like what I have now, it was in its infancy. Apple was nowhere near what it is today, for so many visually impaired and blind people everywhere.
The IBM computer we had in our family, in the early nineties, was equipped with the large print I required at that time. My brother could not see even that. His love for technology was, at that time, limited to tape recorders and stereos.
Now he is all about his technology and he has a knack for it. I, on the other hand, struggle with it, but would be nowhere without it.
We did okay, as children, without all the gadgets we now have. We had to lug around a brailler, so heavy it could break a toe or even a foot.
Now, the only thing that could break, if dropped, might be a cell phone.
I suppose there are advancements in research for blindness, but I don’t keep that close of an eye on that, to be honest. The eye, as a whole, has never really interested me. I couldn’t name all its parts, just because I happen to be blind.
I was born in a time before Internet and now I depend on it for so much, it’s scary to me sometimes, to think about ever going back, but I don’t see that being a problem.
What are my odds of seeing a cure for blindness in my lifetime?
It’s not as simple as that. The eye and the brain, although I am no expert, are truly complex systems. There are no simple answers.
I know medicine and technology are closely connected and related. We can’t really have the first without the second, and going forward the two will merge more and more.
As for more seriously life threatening matters, I am lucky there too.
Organ transplant was in its earliest of stages as well, when I was born. I waited until 1996-97 to need dialysis and a kidney transplant. I received both. If I had been needing it, just a few decades earlier, I probably wouldn’t be here now.
That thought first really hit me when we stood in line, for breakfast, at the resort in Florida for Wish Kids. It was our family trip to Disney. I was feeling uncomfortable. I looked all around at the children with deadly cancers and brain tumours. I did not think I should be included there. Then I knew the reality that I was lucky to be there or anywhere at all.
I am haunted by the stories my grandma used to tell me about her baby brother, the great-uncle I never got to meet.
She was twelve when he was born. She was sixteen when he died.
Her and her two older siblings must have loved having a new baby brother, but any joy there would have been did not last long.
I don’t know what the reality was. He was diagnosed with diabetes. I know insulin had been invented years before, but he did not get it.
Was it still so experimental? Was it not widely used? What chance would he have had to live if he had gotten some?
This was a poor, rural farm family. No easy access. His parents didn’t drag him around the world in search of some fad cure. He died at home, surrounded by his loved ones.
My grandma told me about her memories of her little brother, resting out in their front room, on the sofa as he grew sicker and sicker. His small body was building up with toxins. The sugars in his blood were taking their toll.
She’d been dating my grandfather for only a short time when her brother died. She cried on his shoulder, as I am sure the grief must have been terrible.
I don’t know what it must have been like for my great-grandfather and great-grandmother, to lose their baby.
I know what it’s like to feel nauseated and weak. I know how it feels to have horrible abdominal cramps racking you. I believe these symptoms of kidney failure are similar to what it must have been like, what it would be like to die a slow death from diabetes. I sometimes felt that I was doing that. I feel for that little boy, all those years ago, who must have suffered in his last days, on that couch. I can’t even imagine and yet I can, a little too much.
Blindness or no blindness, I wouldn’t have survived if I had been born much earlier than 1984 and I can’t forget that.
Both medicine and technology, whether I like it or not, play an important role in my life and always have.
The medications have improved for transplant. The future for kidney failure, I hope, is looking bright. I would love to get my sight, but I would love even more to never have to go back on dialysis or need another transplant in my life.
At least, this time around, I will have technology to keep me company.
***
I usually do these things on Mondays, but today is the first day of September and I started
Her Headache 