I was asked to write an article for work for International Person’s With Disabilities Day. I wrote the following and called it Visible Invisible. It was put on the web site at work in a permanent place along with other people’s stories about living with disabilities. I’m very proud of the piece and it got a lot of great reactions. Even better, it got people talking. The theme for this year was invisible disabilities. I didn’t know that when I wrote the article.
I hope you enjoy it.
I often feel as if I am living on an island.
I live with spastic Cerebral Palsy and relapse remitting Multiple Sclerosis. They are both invisible disabilities. They do show themselves from time to time when I have difficulty walking or speaking or trouble with balance and dexterity. On top of the physical ones, I deal with invisible symptoms like brain fog, crushing fatigue, tremors, spasms, blindness and others.
It is like there are two other people living inside my body and I am in a constant battle to gain control of myself. I feel that I’m both seen and not seen. I feel like I’m on an island within myself, that though people see me, they can’t see what I’m going through. Both the Cerebral Palsy and the Multiple Sclerosis come with their own individual challenges and there are many obstacles that I have to overcome in a day. Sometimes, even the most simple of tasks can get the best of me.
It’s one of the reasons I’m so open about living with my disabilities and what I go through on a daily basis. My frame of mind is that knowledge is power. If I’m able to help people understand what I live with, to help them see what it’s like to live with in maybe it will help them to learn something about themselves.
I’m fortunate that within the government, there are so many resources for people who live with disabilities and that most people have been open and accepting of my disabilities. It’s wonderful to work in an atmosphere where I feel seen, where there is little to no judgement. It makes such a huge difference and I don’t feel alone on my island.
However, there were times while working in the government that made me want to retreat to my island sanctuary. There was one instance where a colleague said that I couldn’t possibly have Multiple Sclerosis because I didn’t look sick. I tried to explain to her about some disabilities being invisible, that not everything made its presence known to others, but she kept saying I didn’t look sick. She just didn’t understand no matter what I told her. She shunned me afterwards because she thought I was faking it. When I went to my supervisor and talked to them about it, I was told I was making a big deal out of nothing. I felt dismissed.
When the Multiple Sclerosis first made itself known, I lost the ability to walk, speak or type. I couldn’t see very well either. I was bedridden for a month and a half. I was working for a director at the time. She was understanding at first, but then grew impatient at the amount of time that I was taking off, telling me that I was leaving her in a real bind. I worked hard to get to the point where I was able to walk with a cane so that I could return to work. I tried to do my work to the same standard, but was having difficulty. She told me that if I didn’t improve that she would have to let me go. Thankfully, I was able to find another position and left with my dignity in tact.
I’ve often struggled to be physically accommodated within the government. In one position, I was in a meeting on the sixteenth floor of a building when the fire alarm went off. With my balance and dexterity issues, stairs are my literal downfall. I can go up stairs with no issue but can’t go down. That day, I was told that I was not disabled enough to use the emergency elevator. My supervisor at the time said that I was perfectly capable of walking, so I would take the stairs with everyone else. I’m not sure how I managed it, but I am thankful that one I had three coworkers looking after me, one in front of me, one behind me and one to left of me. I held on to the railing for dear life, my cane tucked under my arm. When I got to the main floor, my body was completely shot.
Yet, for all of those difficulties being disabled in the government, I’ve experienced kindness too. The kindness of people has astounded me, time and time again. I’ve learned a lot about myself and what I’m capable of but especially when to use my voice and when to offer counsel. Most of all, even though my island still sits within me, surrounded by water and the whisper of leaves, I don’t spend nearly as much time there as I used to.
Working in the government while living with a disability can be challenging. However I’m accommodated now in such a way that makes my working life manageable. In the government, I feel seen. Though my disabilities are invisible, I am not.
This is so cool! Check out as part of AELAQ’s Read Quebec Holiday Fest, a bunch of authors from Presses Renaissance Press read from their books! I read the first chapter from Love and Lemonade! I’m the third author in!
It’s always rather nerve wracking to read my own work, but I did fabulously if I do say so myself. I hope you enjoy the chapter.
If you feel like buying yourself a copy of Love and Lemonade, which won the Best GLBTQ+ Book of 2019, you can do so here:
Enjoy the readings!
Earlier this month, I had the honour and the privilege of being interviewed by Seth Vermilyea of Coming Out of the Tarot Closet.
We talked about Tarot, life, writing, art and everything in between. It is really about my path to Tarot and what took me away from it and how I found it again.
Seth is such a great interviewer, and I had such a great time talking to him! Click below to have a listen:
I’m so thrilled with how my episode turned out. I hope you enjoy it too!
This poem is for Sharon who is wonderous!
You are made of stars.
There is a music that sings
every time you enter a room.
I’ve come to think of it
as the music stars make
when they are given
an earthly form.
You are made of light.
There is a brilliance that shines
every time you smile.
I’ve come to think of it
as actual magic that
not many people
You are made of magic.
There is a light that shines
every time you laugh.
I’ve come to think of it
as a spell so powerful
that it needs no words.
We are blessed to know you,
to call you friend and family.
You have given us so much joy
through the act of knowing you.
You are a star given shape,
capable of actual magic
and creating light in the darkness.
You are all of this and more
and I know that my life,
as well as the lives of others,
are made brighter because of
The light that you carry
burns so brightly.
Being near you,
our skin is bathed in gold
and we can feel its warmth.
However, we are not in normal times.
Now, as we remain apart,
I recall what you taught me:
“When I love someone, I tell them.”
That is a lesson that I have held on to,
one that I recall again and again
during this time that the world grieves.
When I think of the words
that you taught me,
I can picture you clearly in my mind
and I can feel warmth glow within me.
You have made a difference in the world
and within my heart.
You have given me
what I needed in order
to open my heart wide.
You have given me
the keys to light and love
and though they have no physical form,
I carry them within me.
Every time I tell someone
that I love them,
magic is born anew.
You have shown me
how to create magic of my own.
I am forever thankful
and I wanted you to know
I love you.