I Am No Rarity #JusJoJan

I took yesterday off, from this
Just Jot It January #JusJoJan
challenge, but there remains a lot to do.

I had an
experience
yesterday, a speaking invitation to something called
PROBUS.

This was a chance to be a guest speaker for a room of retired professional women. I wasn’t just there to speak about my life as a sideshow of what’s known as inspiration porn, meaning a story of my disability that does nothing to truly educate, challenges preconceived notions and to show them what has been kept too well a hidden secret up until now.

I wanted to talk to the ladies about my life, my blindness sure, but of some of the things I’ve accomplished. I made the theme fear and travel and they were amazed I traveled to Mexico alone, to attend a writing workshop in 2017. Sure, many sighted people are amazed I can dress myself let alone travel by myself.

The point is that there are ways to know what I’m wearing and how I get to my gate to fly somewhere. I don’t do it without practice and, sometimes, without assistance.

I talked about my fears and the fears my parents had when they first learned I was blind. I talked about my loss of sight over the years and how I faced my fear of rejection to start this blog and share more of my writing with the wider world. I talked about how to face the fears and push passed them, while they keep on coming.

I impressed them, all kinds of them coming up to me after to shake my hand and tell me to keep it all up.

I couldn’t hope to change every mind about the capabilities of blind people, but maybe I enlightened some of them so that they will realize that I am not such a rarity, that many blind people live happy and active lives.

There is much work to do, why I’ve become involved with the
Canadian Federation of the Blind
to, in many cases, fight back against society’s fears of blindness and what it’s really like to live with it.

I want to improve opportunities for my own life and for those born blind or who go blind later in life. It isn’t a black hole of hopelessness.

The government could be doing a lot more to help. If they listened more and realized it is a good investment to make into disability communities like that of the blind, that given the right kinds of opportunities and supports and training, we can give back to society like we want, like anyone else might do.

Our challenge is to make blind people, struggling to know their options and worth and opportunities, understand and believe that they can live the life they want.

I have been to a yearly convention for the CFB in Canada for the last two years and to one in the US in 2018. I wish I had more money for travel because it isn’t only a chance to do that, but it’s a chance to gather together and share with one another and boost each other in our lives all the rest of the year. I face my fears by traveling, again and again and again, and to put myself squarely in a situation where I am anxious and uncomfortable, a large crowd or group of people.

The experiences I’ve had since I realized my power to make changes through advocacy with like-minded blind people have been some of the best of my entire life and I’ve met people that inspire me for those times when I do feel like it’s all too much and I’d like to give up all together.

It’s often stressful because there’s more work to do than those of us willing to pitch in with our own unique talents and skills, but it’s a brand new year here and I know I’ll keep busy, whatever happens. Life is rarely ever boring for long.

Thanks,
Dan,
for this prompt that I had a lot to speak on. My life has been a rich tapestry of meaningful and impactful experiences for sure.

Back and Better Than Ever

Rough few weeks. I was on borrowed time for the last year, since that horrible month of May, 2015. Almost exactly one year later and my time was up once more. I am now back, with a new computer, and better than ever before. Or let’s hope nothing else goes wrong. After all, I have blog posts to write this weekend and so much more writing I need to complete.

One Year, Two Blogs – #tbt

One year ago, with the help of

Fresh Idea Websites,

I launched a website of my own.

Not only did I have this blog, where I wrote more from a literary perspective, but I wanted a separate place to focus on my love of travel. I thought a lot about persona and branding and I guess Her Headache wasn’t enough, wasn’t quite expressing all I had to say.

The idea came to me that previous summer. My parents were away on a whirlwind road trip out west, through Canada and the US, I had travel on the brain, and I was trying to reinvent myself.

I was sending out my writing more and more, starting to learn how to handle rejections, and trying to figure out what I was truly passionate about.

Within a few months,

The Insightful Wanderer

was borne.

So, though I think I was ahead of most when I came up with the name, I had no idea if I could handle two sites. I decided to jump in and go for it, but it’s been a year and I admit, I haven’t accomplished as much as I’d liked to.

I came across this article this morning:

Why Travel Blogging Needs More Storytelling

This is what I wanted to do. I wanted to combine my love of writing and stories with my travel obsession.

I had begun checking out all the travel blogs the Internet has to offer. I read dozens and dozens of these things. I saw the serge of these sites. I wanted to be one of them, but yet I didn’t.

I could easily have become caught up in the hype.

How do you make money as a travel blogger? How to work with brands and travel companies?

I focused on my own bucket list. I found the travel blogs, same as my more literary ones, that really spoke to me.

I ate up all they had to say about their travels. I admired their adventurous spirits. I thought

Annette White

and

Amanda Williams

were super women and I wanted to follow in their footsteps.

I didn’t want to use my blindness, but yet I saw it as the best way to express myself and capture a reader’s attention, in the travel world.

I liked my idea. The Insightful Wanderer just seemed to shape itself. I know many struggle to decide on a name for their travel blog, but the name was the easy part for me.

Then, I feared I had made a mistake. If I couldn’t be completely comfortable using my blindness as a hook, why did I think Insightful Wanderer was a good idea after all?

I’d gotten the ball rolling by then and I feared I wouldn’t be able to make something of it, but something still propelled me forward.

I had become comfortable with this blog. I had my MacJournal program, for writing my posts, and I knew how to transfer them over to WordPress.

The new site would require a whole new process. It did not seem to connect to MacJournal.

How would I do this? I barely knew how to do anything. Okay, so I was improving, but it always seemed to happen at a snail’s pace, in my own time. I haven’t had help to learn in a while, and the help I do receive is sporadic at best.

I needed a teacher, but where would I find one who knew VoiceOver?

I have had all the website work done for me. That’s why I found Fresh Idea Websites, but since then I have found it difficult to communicate with them just what I need.

I have written a handful of posts. I don’t know why I haven’t written more. I have a whole thirty years of travel I can write about. It’s all in my head and I know I could write, do what the article said, and bring the art of storytelling into the travel blogging world.

I know these things take time. I know that.

On this Throwback Thursday I needed to look back on all this, to see where I hope to be in one year from now.

I have no idea how I’m going to get there. I’d planned to work on the other site for a few months and then have this big reveal here, to connect my two sites, but this revelation has not happened.

Instead, on this one year mark and approaching two years with this here blog, I needed to say something.

I feel anxious a lot because I want to say so much, write so much, share so much. I can’t get it all out. So much was rushing to come out that there seems to be a clog somewhere, a bunch of it seems to have plugged up the line and now I hardly say any of it.

I don’t believe travel needs to be big, grand trips all the time. I’ve been to Niagara Falls and Ottawa this past year. I haven’t published about that on the website.

I still don’t feel comfortable posting over there. I have no help, as even though I say it’s not about the visual aspects, I sometimes have pictures I’d like to include.

People like Amanda travel, independently most of the time. People like Annette travel with her husband, I believe.

I have no partner who wants to experience the world with me. I know the real risk of traveling solo, as a woman who is also visually impaired.

I wanted to be this brave, tough, independent woman and do it anyway, but I continue to hesitate.

I saw how relationships were made and I wanted to form these cool friendships with other female travel bloggers, to connect and travel along with them, but my lack of independent travel made this an unrealistic dream.

I know female travel bloggers are out there, that it’s not all fun and games, but that they’re making it happen. I wanted to make something happen, but I was trapped between wanting to have that life and to write about something more.

I know there is no rush and that I am on no clock, but I feel like I am. I want to write, to make a difference, to do something great with my writing, but I know I have a lot to learn.

If I’m not totally decided on what I want to do, travel or write, or both, how will I combine the two?

I know I am interested in insight. That’s why I write in the first place.

I also feel like I am wandering and how that doesn’t have to be a bad thing. That’s just where I am with my life at this time.

On the Internet radio show interview I did a few weeks back, I said that I hoped my thirties would be this whole decade of discovery, when I would get back into the world, to find what I was looking for. I hope having both these sites will be a part of that. I hope, in the next year and the years after that, I can figure all this out.

I don’t have The Insightful Wanderer as I’d like it to be, not yet. It’s hard to completely lay out how I’d like it to look, when I can’t even see it. I hear it through audio voice, reading it to me, but I don’t know how to explain my vision for it.

I still know nothing about CO and stats. I don’t write top ten articles that get travel bloggers on the map. I don’t have a mailing list. I hardly know how to handle the comments for my posts. Relaying what I’d like hasn’t been easy and it’s down to me to get that all straightened out.

I’ve met travellers who are taking a more literary approach and I would like to see if that’s where I belong, but I’m still unsure.

Maybe I’ll carve out an entirely new path for myself, doing something nobody before me has really done, and that’s why I haven’t been able to decide. I try not to focus too much on the destination, and just enjoy the journey as is said, but that’s really hard sometimes.

I like to know what’s going to happen, how things are going to turn out, but I also want to enjoy the learning process. I know that’s the only way, with writing, and that’s what I am all about, in the end.

Happy One Year Anniversary to TheIWanderer.

Sorry I’ve let you down, let myself down, but I believe in you, in us, in possibility.

Milestones and Siblings

I’ve reached 1000 followers on this blog.

Yeah yeah. I know. Most bloggers, including me, say that they don’t care about that.

They care a little. I care a little.

For years nobody was reading anything I wrote. Now some are, at least some of that 1000 are.

Then April 10th was International Siblings Day and I did not write a tribute or message about my siblings on the day, but I have been thinking about siblings, thinking a lot.

I spent the day yesterday with my siblings, my father with some of his, and my niece and nephew…well, I watched them play for hours.

The fact that siblings grow up, move away, and grow apart is hard for me to accept sometimes.

I watched my siblings, my father and uncles, and my niece and nephews. I thought about how deserving of that relationship my other nephew is.

I thought about how siblings can be far far apart physically, but still remain close, or living nearby and as far apart emotionally as possible.

Or distance can keep them apart and things are just never the same.

My father’s half-brother is visiting from Germany.

The “half” part matters little. The connection is not half anything.

I watch them and I think again about siblings.

Circumstances keep siblings apart and it takes effort to come back together again.

I had forgotten what he was like, since I saw him five years ago.

Things started to come back to me, about how generous he was in hosting us, when visiting Germany in the late 90s.

He is outgoing and friendly and fun.

The language barrier gets in the way some, but he speaks enough English to get by.

It is too bad he is the one who speaks English. Languages have never been my thing, but it makes you want to conquer that obstacle.

The brothers are off to visit their sister.

Life is unpredictable.

It’s hard for me to grasp the fact that they all had a whole lifetime before I ever existed. I can’t fathom that and it makes me wistful.

From Germany to southwestern Ontario, to near to Canada’s capital, Ottawa.

Time and space can separate those connected by blood, but those gaps must be bridged. Time doesn’t slow down for anyone.

On visiting my aunt last month I felt this most acutely. She is my connection to her mother, my oma, and meeting her, ten years into my own life and fifty or so into hers was a blessing in my life.

As time flies by, opportunities slip past, past me and past them. We all know that.

I didn’t want to leave her that March day and now the siblings pose, arms around each other, holding on tight to whatever time they have left.

But they never know when that time together might run out, for any of them.

I wish I could slow this process down, for them and for myself too. I wish I could freeze it in still.

No language barrier can get in the way of love and family.

I watch the newest generation and it seems like they have all the time in the world, all the time to learn and grow and be siblings.

I think of my 1000 blog followers and what importance that holds, the milestones that mean the most. I think of the importance siblings have in my life.

It helps me to keep life in perspective and to remember what’s truly important to me.

I would be nowhere and nothing without my siblings. I love to see all the siblings around me. I want us all to make time for each other, to appreciate one another, and to never forget that we started out together, we know each other like no one else does or ever will.

Yet sibling relationships are all different. Some take time to grow.

It’s a unique and special connection that a sister or a brother has or is to the others.

All the realities of growing up and drifting apart don’t matter, they won’t matter in the end, when the end comes.

He brings my niece and nephews gifts from Germany, my uncle does. He toasts me, our beer bottles clinking and I’m glad he’s here.

I am lucky to have him and the others in my life, in my family, forever and no matter where we all live, where we all go, might end up at.

Hope everyone can have a day like I had, parents and siblings, aunt and uncles, niece and nephews. Gather family around and don’t let them go.

Not everyone can say they’ve had a day like I’ve just had, but make the effort. You won’t regret that you did.

Special thank you to every one of my blog followers. You read my words and I thank you for that.

Thank you to my siblings, for all the support you’ve shown for this blog and for me.

SoCS: Dear Grandma

***

Dear Grandma,

I started this blog with an entry on my birthday and in that entry I talked about your diaries.

They are still upstairs, in the perfect chest I found for them, protection against any possible damage.

You wrote in those every night, for so many years. I tried to follow your example, many times, but always lost interest. I guess I didn’t believe I had enough to say.

I don’t feel that way anymore Grandma. In fact, it’s become quite a problem now, now that I have too much to say and I can’t stop myself.

I think what you had to say, all written by hand up in those books, I think that was all important stuff and I wish I could see to read it myself.

I remember how you used to read from your diaries, to me, at your kitchen table sometimes.

You sometimes even stumbled and had trouble reading your own writing, from so many years gone by.

You loved your ritual of writing in your diary at night. I loved that about you.

Now I don’t know if you would think it quite so good an idea, if you were still here, if you knew I wrote my blog for so many to see.

You were from a different time and you didn’t understand the Internet. From the few conversations we had about it, you didn’t seem all that impressed.

I have good reason to believe you would understand though, if you knew what it means to me to have a journal, a blog, a diary.

You knew I couldn’t write by hand anymore.

I would show you my blog, but you wouldn’t buy a computer, so I would have to print out my blogs for you to read.

I know you’d want me to. You’d ask when I saw you, if I had any more journals written since we saw each other last, because you loved reading my words.

I miss the unconditional love and acceptance you gave, that pure pride I heard in your voice when, on those rare occasions, I showed you something I’d written.

I write with you in mind, all the time, Grandma.

I want to keep a journal, a record of all the thoughts and all the experiences I’ve had since you’ve been gone, that I wish I could share with you.

I dedicate today’s stream of consciousness Saturday post to you.

Love,
Your granddaughter.

***

This was my post for this week’s SoCS, with today’s prompt, “Jour”, from:

http://lindaghill.com/2015/04/10/the-friday-reminder-and-prompt-for-socs-april-1115/

I didn’t feel very French today.

🙂

I thought of journal and immediately thought of my grandmother’s diaries, the ones that are my most treasured belongings, since she died ten years ago.

What’s in a Pen Name?

If the rumours are, indeed, true:

Hillary Clinton to Announce 2016 Run for President on Sunday – New York Times Politics

It’s funny that I mention her in this post from just over one year ago,

(Women & Books),

as I spoke about women, on International Women’s Day, 2015 and as I thought about feminism, equality, writing, and the pen name.

I wrote about two specific women writers in that post last year: L.M. Montgomery and J.K. Rowling.

I have a lot to say on women’s rights, but today I wanted to focus on another issue that has been at the back of my mind lately. The two things come together in the end though, as is often the case for me these days.

For this week’s Fiction Friday I wanted to discuss pen names and both L.M. and J.K., other than the fact that these two follow the order of the alphabet,

🙂

they also represent actual ladies, with real, full names: Lucy Maud and Joanne Kathleen.

Why do authors use pen names?

I have heard several reasons for the act of writing by one name or another, or more, when publishing several books or series of books.

Funny how I wanted to write this post and then, suddenly, I come across a few blog posts on the subject.

I am including them here, but I want to mention that I have not yet read them, as I write this.

I know writing is repetitive. It’s hard to truly come up with anything original anymore, so I did not want to have read another blogger’s thoughts on this topic, before I could explain my own.

Pen Names-Necessary Evil or Ticket to Crazyville?

and

What to Do When You Absolutely, Positively NEED a Pen Name

Anne Rice is best known for her novel Interview with the Vampire.

She had written so many novels over her career, but I only recently heard about her romance/erotic series of novels: Beauty’s Kingdom.

With the release of the Fifty Shades of Grey books and movie, Anne has been discussing the place erotica takes up in literature.

I visit Ms. Rice’s Facebook page on a regular basis.

Anne Rice on Facebook

And so I heard about the release of her newest Beauty’s Kingdom novel, on April 21st, first one since they first came out in the 80s.

Back then Rice wrote these erotic fiction stories under the pen name A.N. Roquelaure.

Funny how her initials are AN, so close to her actual name. What a coincidence.

😉

She said on Facebook that she preferred a pen name back then because it distinguished her persona, from one genre to another.

I happen to think that vampires can be a highly suggestive and erotic creature. It isn’t such a stretch from one to the other. I can’t say I was totally surprised, when I first heard about her alter ego.

From mainstream author to the indie world:

On Facebook I became aware, recently, of a female writer named Joanna Penn.

The Creative Penn

Perfectly literary name and the perfect name for today’s topic.

🙂

Joanna writes thrillers, under the “penn name” of:

J.F. Penn.

She goes by Joanna when she does podcasts, interviews, and speaking engagements.

She writes non-fiction on writing and on being an entrepreneur.

Anne Rice was trying to separate her writing personas, but in the 80s erotica was mostly secretive.

Nowadays, with Fifty Shades, it is becoming mainstream.

There is no more need to hide. Or is there?

It’s still important to keep separate, even when the audience knows the truth.

Hiding in plain sight I suppose.

Today’s world is a lot different from the one where Anne Rice wrote Beauty’s Kingdom.

It’s not the 80s anymore and nobody can keep a secret in the technological age we now live in.

Why does Joanna Penn even bother with the distinction now? Why do any of them?

When Harry Potter came to an end and Rowling wanted to go in a different direction, she first wrote The Casual Vacancy.

After a mixed review, she moved even further away from wizards, with a good old fashioned who-did-it detective story.

Only Rowling did not write this.

A man named Robert Gailbraith did.

J.K. Rowling to Publish Another Book Under Pen Name

So she has already fiddled around with her name in the past, using initials to disguise the fact that she was a female writer.

Now she chose to go with a male’s name, surprise surprise, when writing in a genre that has historically been known as a male genre.

This makes me mad and it confuses me. I love her and Harry Potter, but I can’t say her choices since have impressed me.

I wish I could talk to her about why, as a writer who has been given the extreme honour of writing books, why she has done what she’s done.

So I see it, still, partly as a fear of being unable to sell as many books if people realize you are a female. If you use initials, at least it may fool readers or customers, in the moment.

Is this a male writer or a female writer?

Hmmm.

Oh well…

But the creation of a whole new male author, Gailbraith, this is baffling to me on many levels.

No room for ambiguity with initials here.

On the one hand I know all about the importance of branding.

I have branded myself as Her Headache, for my writing blog.

I don’t disguise the fact that I am female or hide my real name, but I do put myself out there in a certain light.

Even more recently I have rebranded myself, for my “alter ego” as The Insightful Wanderer, with the creation of my travel blog.

So I have two names now, plus my real name underneath.

I see the value in having separate titles, to distinguish oneself in separate areas of one’s life. I just wish there was no issue, from a feminist perspective, but I believe there is.

I guess I just wanted to explore this topic, here, and to hear your thoughts on branding and pen names.

Do you understand why these authors and others have chosen, in the past and in present, to go by different names?

Okay, now I will go and read those other blog posts on the existence of pen names.

🙂

What’s in a name anyway?

Spotlight On Life’s Adventures

Amy Bovaird lives life to the fullest.

She has traveled and taught.

She blogs and she writes.

You can read more about her adventures,

Here.

I have learned a lot from her since I discovered her, online, and happily read her new book and reviewed it,

Here.

I was pleased when she asked to feature me for not one, but two Friday Friends segments on her own blog.

She kindly allowed me to talk about all I wanted to talk about, breaking the guest post into two parts.

The first can be found in Part One,

Here,

where I talk about my love of books and the written word and the second,

Here.

In Part Two I talk about my love of travel and my dreams of growing a travel blog.

I have been inspired by her fearlessness, not because she’s traveled all over (which I admire greatly), but because she has gone through so much with vision loss and yet she’s made it work for her.

I interviewed her when her book came out,

Mobility MAtters,

and I wanted to update our relationship since then, and the collaborations between us that have increased.

I appreciate what she has done for me and I hope I have been of some help to her with promotion of her book.

Buy It Here

She has had her adventures and continues to have them. I have had my own and hope we both have exciting adventures still to come.

I hope she will allow me to interview her solely on her own experiences with travel, possibly on my travel website, at some point in the future.

Rare Disease Day, 2015: Ventilation

We got to the hospital, that spring day, not knowing what to expect…

I had just spoken to my brother a few hours earlier and now here we were, waiting for the doctors to come out and tell us what was going on, if his kidney transplant of over ten years was a total loss.

It would be a crazy and chaotic spring that year, five years ago already. How time passes.

After losing Grandpa,

Ruby Red,

that February and something mysterious going on with my brother and one remaining grandparent hospitalized too.

We felt worn out, running from one to the other, the sterile halls became our temporary home.

***

I had my transplant in 1997 and two years later he had his: me from my father and then it was our mother’s turn. Her kidney never seemed to work like the one my father had given me. It was nobody’s fault, hers, or my brother’s behaviour that did it. It just was what it was.

It lasted him ten years though, which got him through his teen years.

Things started to go downhill eventually. He felt sicker and sicker as time went on. He had low energy and found it hard to walk far at all. His blood levels were low and he started needing transfusions. His hemoglobin dipped all the way down to forty-five or fifty. It should have been well over one hundred.

http://www.mayoclinic.org/symptoms/low-hemoglobin/basics/definition/sym-20050760

It all seemed like a blur. He ended up in hospital eventually and the doctors were scrambling to figure out what was keeping his levels as low as they were. We all knew his transplant was nearing its end, but we hoped, he hoped it could be dragged out as long as possible, before dialysis or another transplant would be his only option once again.

Weeks in hospital, second time in one year. He had test after test and this included a bone marrow biopsy. They had tested to find out, if his blood was so low, that maybe he was bleeding somewhere inside, a slow leak of some kind. This seemed strange, but it had to be more than a failing kidney.

***

We had been visiting him in hospital on a daily basis because that’s what we did in our family.

We were used to being in children’s hospitals. Now we were grown, but our family still needed each other. I needed to be there for him.

On that one particular day we were on our way to visit, but he spoke to me on the phone first and was feeling a lot of extreme pain. Something wasn’t right and things went downhill fast.

Within a few hours, between him and the nurses saying something was going on, we raced to his side, but by then he had been taken into the cath lab.

He would report to me later that the pain he experienced that day was the worst he had ever felt, even after years of surgeries as a child.

We were brought into the ICU to see him. The bleed had been found, a tiny coil had been placed in his pelvis to stop it, the cause of the pain he felt and the reason for all the blood loss he’d had in recent months or even years.

We walked into his private observation room in the ICU and were shocked to see the state he was in. The shock of it hit me like a tun of bricks. I expected to hear his voice and instead I found silence, pierced only by the steady push of the machines, breathing for him, as he lay in a purposeful sedition, brought on by the doctors.

I hadn’t been well prepared and never imagined it was that serious. How serious I couldn’t quite grasp even in that moment.

He was silent, unconscious, still.

All I could see was his dark shape against the light pillows. I heard the sound of the ventilator and it hit me. Tears filled my eyes then, the burning, so well known to me, pressed against my eyelids.

We stayed a while, talking at first in whispers, not knowing why.

Then, needing to let him rest, we went for dinner, like we often did.

I felt numbed by the urgency and the unexpected situation we were dealing with. The bleed was stopped, but he was looking at a week in ICU and who knew what else. I faced the fear of losing him.

Would that, could that be a possibility, even remotely?

I had never before felt so scared of that possibility. What would I do if that happened? HE was so much a part of who I was, my little brother, my best ally and the one who knew me best in the world.

I picked mindlessly and miserably at my dinner, but all I wanted to do was return to his bedside, to watch over him and stop any further harm from coming to him.

***

He had a scratchy voice lasting for days, from the breathing tube that day. HE had the nurses pipe some music through the speakers of the ICU for a distraction and something to focus on and help to pass the hours he lay there in that bed.

We stood at his bed, my sister and her husband and myself. HE had been awake, in horrible pain, and then out of it for he had no idea how long. A shock for him when he finally woke up again, when we told him what happened and how much time had passed.

HE would be back on dialysis within a week. The doctors wanted to do more tests that had high risk of the dye used damaging the kidney to the point that, if it weren’t already done for, it would surely be then.

He was confused and on the fence. It was a week of disorientation and at the end of it he was on the way to being on the organ donation list, for the first time.

***

Kidney disease is common enough, but he had gone through something none of us had expected or understood. He must have been bleeding internally somewhere, and then he wasn’t. It had ended, not as quickly as it had begun, but was a slow build and a quick improvement.

He would be on dialysis, three times a week, for the next three years, before the day he would get the call that a kidney was available.

I wrote about Rare Disease Day for the first time last year, only weeks after the first post I wrote for this blog.

My brother is strong and resilient. I know it is hard to deal with medical issues that leave confusion and uncertainty in their wake. HE still deals with this, but it has returned from a serious kind to a slow lingering of symptoms that only he really knows.

HE deals with things every single day, but they are not internal bleeding that turns dangerous. He does well now. HE feels great, for the most part, and doesn’t let things out of his control stop him from living his life.

I admire him for this. He doesn’t dwell on the what if’s like his big sister. I wish I had his view of the world sometimes.

I stopped myself, just short of including “Wind Beneath My Wings” in this post. No need to embarrass him anymore than I already do.

🙂

I will include a link that explains what he is doing with his life now though, the hopes and dreams he has for his future,

HERE.

***

Rare Disease Day, 2015 – Official Video – On YouTube

Tomorrow is Rare Disease Day, 2015 and I will never forget that I could have lost him, five years ago, in a second.

Having a rare disease,

like I wrote about last year,

can be incredibly frustrating, when others do not understand, including the experts who have all the medical knowledge.

I just wanted to celebrate, on this day and every other, that whatever might be our lot in life, I still have my brother in mine.

Dating in the Dark

All joking aside:

Blind Bonus.

There are some questions I’ll probably never totally come to a decision on.

***

Q: In what other ways are your interpersonal relationships affected by disabilities?

Examples might be that it’s harder to form or maintain relationships or that people treat you differently once they realize you have a disability.

A: Yes. Yes. Yes.

🙂

One way this is the case is in dating, but today I will speak specifically about online dating.

I could write a whole book on this subject, with the experience I have had with it over the last five years, but up until now I have resisted writing anything to do with this fast-growing method of finding love.

I have resisted, not sure why that is.

Dating is one interpersonal relationship issue I have yet to write extensively on.

It is, indeed, harder to form this kind of relationship when you can’t locate a stranger, out of a crowd, with whom you might have an interest in. It can narrow down the places where meeting someone is possible. All of this, and yet I was determined and I have had some success.

The question here is one I struggle with every time I begin speaking with a new guy online.

Of course, in person it is obvious, often glaringly so. I like to think I can fit in, in public, and not stand out as the blind girl. This isn’t always very realistic for me to think.

Online, I have never been able to decide when and how to bring it up.

Do you, perchance, know the answer to this?

🙂

Do I mention it first thing in my online dating profile? Do I casually attempt to sneak it in the middle somewhere? Or leave it until the last few lines?

Am I looking like I mean to hide the fact, if I don’t come right out and say it? Do I ruin things before even getting started, scaring someone off, if I make it the first thing they read?

I don’t want my blindness to be all I am; it’s not.

I want to be able to show that I am a well-rounded person, with many interests and passions. My blindness is a factor, for sure, but it can’t be how I define myself overall or that is how others will start defining me too.

Yes, people do treat me differently when I do reveal this one detail in particular. This, I understand. I can empathize.

Whether I reveal it in my first message, during a subsequent phone call, or when they show up to meet me face-to-face.

I have experienced different amounts of shock and surprise. I have heard it all, from the pause of several seconds, to the stuttering response, to the normal array of curiosity and its companioning questions.

Like anything else, it isn’t a good idea to leave it out and just show up for coffee, cane in hand. This, like being less than honest about current weight or age, it can result in a bad rapport from the start. I know not to pull this on anyone. It really is not fair and it leaves me awkward and fumbling too.

I like to know, somewhat, what I am getting and I want the other person to have the same courtesy from me.

At the moment I am watching a tribute special for Stevie Wonder.

Of course, it is no secret that Stevie is blind. He doesn’t seem to have had any trouble meeting partners in his own life. I doubt this “wonder” has never had to utilize online dating to find women.

then again, who knows.

At one point, host LL Cool J asks everyone to take a moment and close their eyes, even going as far to darken the screen, while the song Stevie wrote for his baby daughter years ago is being performed by a few fans and fellow performers.

http://entertainthis.usatoday.com/2015/02/16/stevie-wonder-tribute-beyonce-john-legend-lady-gaga/

This is certainly an interesting part of this special. I was wondering when they were going to address his blindness. I figured they would.

Now I am no Stevie Wonder.

🙂

I haven’t had his talent or fame to help me meet people.

Stevie Wonder has been the main spokesperson for the blind community, world-wide. When most people think of blindness, they think of him. He has been extremely successful in his life, blindness notwithstanding, but dating, love, and children are experienced differently when unable to see the faces of loved ones.

I know it is a touchy subject sometimes. I wish there was a one-hundred percent agreed upon answer to my main question of this post.

I know online dating works. If I keep my eyes open, pardon the pun, I can and have found those who are willing to be flexible and give dating a blind woman a shot.

I have never been accused of trying to hide my blindness when commencing conversations with anyone online. I’ve found the right time to slip in my blindness in there. It works and I am always navigating the turns and the bumps of dating online.

I guess some questions will never have definitive answers to them. This, I greatly dislike. I like to know which way to go when I am struggling with a question and when no answer presents itself to me, I rail at the uncertainty.

I don’t want to be treated different, but unfortunately this is unavoidable in most instances.

Someone who has never before spoken to a blind person will not usually know, right off the cuff, how to handle themselves.

I try to make them feel at ease, by simply speaking of your normal, run-of-the-mill things that anyone who’s just getting to know another person might discuss.

This is often all it takes to keep things moving forward. And forward is the only way any hoped-for relationship will have a chance.

Sure, some may halt any further conversation, but there’s always more out there. Sometimes, the shock of it is just too much for a person to handle. That is their prerogative.

I could always start a new series on this blog, online dating adventure series, but i think I’ll continue to resist this impulse.

🙂

You never know. Maybe this week’s question will have started something, but then again I am not sure people want to hear about such things on a regular basis.

I wonder if there’s a site out there, devoted only to online dating stories, good or bad.

Well, while I’m off to investigate that further, please offer your thoughts and/or opinions on my question and I will leave you with my favourite of Stevie’s lesser well-known hits.

Stevie Wonder – PArt Time Lover – YouTube

***

Have you ever tried online dating?

Did you ever find out something about someone you were talking with that surprised you? When is it important, do you think, to provide certain details?

How have others reacted when you’ve offered up something you’ve been nervous to mention?

On next week’s Memoir Monday post, for the

Redefining Disability Awareness Challenge,

is a question that is at the heart of this whole thing.

Do you have preferred language when it comes to disability?

My 1000 Voices Speak Reveal

So I have been doing interviews on this blog for a while now, but I haven’t quite gotten the procedure down yet.

🙂

A few weeks ago I had the pleasure of interviewing two extraordinary people, but I messed up by not saving my conversation with them.

Oops!

I like to record the interview, if that is not a problem for the person, so I can just focus on the people I’m interviewing and then listen back later and make my notes and write out their answers as they were spoken.

I love these two particular people’s unique perspectives and personalities. This is why I was so bummed that I messed the whole thing up.

They were very understanding, compassionate even,

😉

when I’d told them what happened, but I still kicked myself for not taking better care of the recording.

What was I going to do now? I wanted to share the amazing contribution this couple makes every single day, how much they care about our planet and how much compassion they have for all living things, and I didn’t know how I would best achieve this.

Then it hit me…

#1000Speak Call To Action!

I was prepared to write this particular interview and post it on my blog, but fate stepped in and I was forced to alter my plans.

My 1000 Voices Speak For Compassion reveal is this.

I will be taking what I learned from our four-hour conversation and, instead of a set of interview questions, will be making my two cousins the focus of my February 20th 1000 Speak post.

Theirs is a story of hard work, dedication, and integrity.

When I thought about what compassion means to me, I realized I had two of the most compassionate people I’ve ever known right there in front of me.

I want to share their story and the difference they continuously make with the work they do for the environment and with children.

They are the best examples I can think of and I can’t wait to tell you all more about them.

This was just a sneak peek and I hope you will return on Friday to read more about them and the important work they do.