I Wish, I Wonder

I wish I knew what it was like to live without pain.
I wish I was able to run.
I wonder what it feels like to wake up every morning with joy in my heart and with hope for the future.
I wish I didn’t have to plan outings around my physical and mental limitations.
I didn’t feel guilty when I can’t play with my daughter.
I wish dancing didn’t hurt.
I wonder what it’s like to run.
I wish I didn’t need to become a walking medical encyclopedia.
I wonder if those people are staring because they see me limping.
I wonder if they think my physical pain is due to my weight.
I wonder if they laugh.
I wonder what it’s like to not hate yourself.
I wish I believed things will get better.
I wish that losing my child wasn’t a risk I take by being open about my disabilities.
I wish people asked me what I needed more often
I wish I wasn’t alone
I wish accessibility wasn’t seen as “special privileges”
I wish I didn’t feel like I have to minimize my symptoms.
I wish I had more good days than bad.
I wish I didn’t feel like a faker when I have those good days.
I wonder what it would be like if the world saw me as fully human.

 

I Wish, I Wonder
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Guest Post: Disembodied

CN: Mentions of death, suicidal ideation,

Think of someone you once knew.

A co-worker. A friend. A family member. Someone you loved. Someone you knew intimately.

Remember the details. The colour of their hair. The tilt of their head as they turned to smile at you. The sparkles of laughter in their eyes.

Close your eyes, and feel their arms around you. The arms of someone who cared. Who held you in your darkest hours. Who protected you, catching you even before you knew you were falling.

Remember how much you loved them. Try to remember the spark of hope you felt when you were with them. Feel within you how loved they made you feel.

And then bring yourself back to reality.

Return to the sad, grim, fact, that they are gone from your life. And no-one can tell you why. Because years ago, they vanished into thin air. Never to be seen again. And there are no answers to be found.

They are just… Gone. And no-one knows why, and no-one can say where. And no-one is looking. The trail has gone cold, and there are no clues left.

Again, bring your heart to remember the feeling that they brought to you. Focus on it. Own it. Hold on to that feeling.

This will be important. Because it is the only way that you will be able to see them long enough to find the answers. Continue reading “Guest Post: Disembodied”

Guest Post: Disembodied

Messes and Mayham

The past few months have been a struggle. As you know, my ex and I split this summer after 7 years. Over the past few years, I’ve come to rely on my partner to help me with household chores I find difficult because of pain. Being newly single has meant trying to handle those tasks despite my impairment.

The result has been varied.

Things like laundry, in particular, are difficult to manage. Between the actual motivation barrier imposed by executive dysfunction as well as ADHD, and the physical burden of carrying a heavy load downstairs, bending over to both pull out clothing from the hamper and to put it into the machines, transferring the whole thing into dryers, hauling it back upstairs, and then standing and folding – it’s been a hassle and a half trying to get it done in a reasonable time period. This week even, I had to ask for help in getting it done, since my back just couldn’t handle it.

Other things have managed to become a bit easier thanks to the help from my new roommate in making things more accessible.

For the past month, we’ve been working on trying to consolidate our things while still leaving enough room in the kitchen to actually prep food. This has meant countless hours, designing and building shelves, installing pegboards, trying to figure out appropriate storage containers for all and sundry. Because of my new roommates schedule, it’s been a strange mix of two days a week of being able to unpack and consult together, followed by the rest of the time being the only one home to try and make sense of things.

In addition to trying to organize and manage the common spaces, I am still working on my room/office. Trying to organize things so that I can easily manage by ADHD, work on writing, switch to artist mode, work on some home improvement task, and record videos, all while keeping in mind my difficulties with frequent bending, lifting, and also making space for things like sleeping and having clothes, has been a challenge. Trying to balance all that with still having to get things done involving my various art supplies, has been particularly entertaining to navigate.

I feel like I’ve been living out of boxes and mess for months, though I haven’t stopped working on cleaning and organizing in all that time.

Continue reading “Messes and Mayham”

Messes and Mayham

6 Ways to Support Artist Friends While Broke

 As the holidays approach, many people want to help out their friends who are artisans. Unfortunately, for many of us, money is such a big restriction that it can feel impossible to do. Realistically, for many struggling artists – making sales can be the biggest actual help. Not only does it help pay for necessities, it also provides additional validation, and so on. However, when most of your friends are also struggling artists themselves, then it can be a case of just honestly not having the money available to buy something yourself.

I’ve faced this concern from both sides: the broke friend AND the struggling artist who is desperate to make sales. Not only this, but I’ve faced the problem as an artist of multiple different media: writing, storytelling, music, painting, jewelry making, cooking, and so on. Sales can also mean a variety of things: patrons, clicks on ads, views, registrations, physical sales, and so on.

With this in mind, I thought that I would share a list of 6 Things You Can Do that don’t cost money, but that can help generate more sales and go a LONG way towards helping an artist sustain themselves.

Continue reading “6 Ways to Support Artist Friends While Broke”

6 Ways to Support Artist Friends While Broke

Guest Post: From quack to quacked, Quark to quarks: A journey to invisibility.

(Note from Ania: This post by Sophie was written with the assistance of a speech to text tool. There may be some typos, which I haven’t been able to correct yet.  I will come back and edit them as soon as I have the spoons to devote to it.)

We live in a world of experts. Scientists. Astronauts. Doctors. Computer programmers. Politicians. Teachers. Husbands. Wives. Parents. Men. Woman. All the people. Everyone you see around you is an expert in their field, even if we all haven’t gone through higher education to obtain a degree.

But you don’t need a degree to be considered an expert in your field. In a lot of cases, the people who will know most about a thing are the people living with and dealing with the thing. And for the most part, people accept these masters of the universe in their own chosen specialty.

Parents are masters in parenting.

Women are masters in being women.

Men are masters t understanding men.

Even children are masters at understanding children.

Social justice warriors are masters at navigating the system and assisting people in distress because of the system.

Marginalized people are masters at knowing what it means to be oppressed because of who you are, or what you believe in.

I am sure that you, reading this, are a master in your chosen domain.

But I cannot speak to what it’s like being a part of that domain. And it’s not why I’m here today, writing this. But I did want to make sure before I began that you understood that I SEE you. You are not invisible to me. And I am quite certain that you will have experienced some or many of these things that I want to speak about. I know that your pain is real. But I must focus my thoughts and speak of the things that I personally know, which unfortunately isn’t every single person on earth, much as I wish I could sometimes.

So let me try this again, from the beginning.

Each and every one of us is a master of our own domain. We don’t all have university degrees to tuck in under our belts, but we do all have our passions, and qualifications. Today’s words will focus on one particular subset of the human culture: Being disabled, and the invisibility that too often comes with it. Because while it isn’t the knowledge I would have wanted for myself, it’s what I have become educated on, by means of the circumstances I’ve been thrown in.

It is in that light, in that guise, that I introduce myself to you.

Sophie, Ph.D.
Partially human, Disabled.

Continue reading “Guest Post: From quack to quacked, Quark to quarks: A journey to invisibility.”

Guest Post: From quack to quacked, Quark to quarks: A journey to invisibility.

Guest Post: Who Needs Social Justice Warriors Anyway?

CN: For medical details, descriptions of pain,

As early ago as two years back, I’d never heard the term “Social Justice Warrior.” The first I heard of it was from a friend. He made those “Pesky SJWs” out to be horrible things, worse than Klingons out for revenge. I didn’t really understand it, and so had no opinion on the matter. But given that I am a non christian liberal and he’s a conservative christian, I felt there might be more to it than meets the eye.

But, well… Too much life happening, and no spoons to research it. And besides, it doesn’t matter. I don’t need someone out there telling me what to do and how to do it. I’m an adult, right? Even when I don’t feel much like adulting.

Continue reading “Guest Post: Who Needs Social Justice Warriors Anyway?”

Guest Post: Who Needs Social Justice Warriors Anyway?

If Ever I Should Love You

I was going through my various writing folders, when I stumbled across an old paragraph I wrote about what I was looking for in a relationship. So much has changed since I wrote it. When I did, I still thought I was straight. I assumed it would be a man I would spend my life with. I assumed I would be monogamous. I assumed I would have a normal life; I didn’t yet know the extent to which disability would play a role in my life, or the hardships I would face as a result of systemic ableism. I still thoughts that my wedding would look like two people standing together in a church because they believed it would be witnessed by a god.

I first wrote that post over ten years ago, then modified it somewhat before meeting Alyssa, after I had been dumped by my partner of two years.

That relationship had taught me about the need for common interests. I realized then how important to me it was to be able to have different conversations with my partner: about books, movies, social issues, politics. To be able to share stories and discuss different aspects of them and different things that stood out to us. To be able to share knowledge about interests we might not share but find interesting because of our partner’s interest and to have the same courtesy returned.

Seeing that post at this time, while I’m still processing the dissolution of my marriage and the myriads of revelations after the fact, I considered writing a new post. I ran this idea past my therapist and she strongly encouraged me to do so as a step towards determining what it is I want and how it differs from what I had/thought I had.

Continue reading “If Ever I Should Love You”

If Ever I Should Love You

I’ve started Wrapping

… wire that is.

I’ve recently restarted making jewelry out of semi-precious stones and beads. It’s been a fair amount of work, and you would not believe the blisters I’ve developed on my fingers. It’s been an interesting  lesson, and a good way to disconnect from time to time. Just focus on moulding the wire.

Here are just a few of the pieces I’ve made so far.

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If you like any of the pieces you see and want to buy them, they’re all available in my Etsy page. You can also use the splainyouathing coupon code to get 10% off.  Purchases help keep me afloat.

I’ve started Wrapping

Guest Post: A Night at The Opera: How A Blind Date Got Blind-Sighted By Humanity

CN: Ableism, Threats of Violence,

It’s been a hard week for me. Today was the first day I could walk semi- normally after crashing my e-bike into a car on Thursday.My legs are black and blue. I’ve got whiplash, sore muscles, and have spent the last several days in bed with icepacks at the ready.

I was happy to be feeling better today, because tonight I was going to see “Phantom of the Opera” at the NAC with my 11 year old niece.

Being barely able to move, with my legs looking like a cross between a gorilla and a black and blue elephant, and not to mention that fabric on my legs is extreme agony, I opted to wear some comfortable pants and running shoes. I wasn’t going to risk falling again by wearing heels, or risk having a miserable evening by wearing clothes that hurt my legs, or revealed their startling mosaic of bruised hairy nightmares to the whole NAC. Pants are definitely more respectful.

When we arrived at our seats, sitting directly ahead of me was someone I knew. The person who told me Phantom was in town and one of the reasons I bought tickets for this showing for this specific section. This way I’d have someone nearby that I knew, and my anxiety wouldn’t be as bad. When we get to our seats, I see that she’s there. So far, so good.

I said hello as I sat down. She looks at me with disgust in her eyes. “Really? You couldn’t dress up? This is the NAC, Sophie, you’re an embarrassment.” Well. I’m sure my hairy black and blue legs would have been more so, thank you very much. The safety zone I’d planned on wasn’t going to happen, clearly, but I had a backup plan. I took out my Anxiety Duck. He comes with me to my appointments all the time, and helps keep me calm. Again, my “friend” felt the need to comment: “Really? Put that away. You’re humiliating me.” OK fine. Guess who’s on ignore the rest of the evening.

Continue reading “Guest Post: A Night at The Opera: How A Blind Date Got Blind-Sighted By Humanity”

Guest Post: A Night at The Opera: How A Blind Date Got Blind-Sighted By Humanity