We Are Warriors

8E7467A8-A6A3-40A8-901E-8F9CFBD390E9This afternoon, I was having a conversation when the subject of my memoir came up. She asked me what it was about.

“It’s about my journey with multiple sclerosis.”

“Oh!” This pained look came across her face. “I’m sorry.” She said. “I didn’t know you had MS. You don’t look disabled.”

“It’s all good. I was born with Cerebral Palsy, so the multiple sclerosis is just along for the ride.”

The pained look on her face deepened. “I’m so sorry.” She said.

“It’s really okay.” I told her. “The MS made me realize what to be thankful for. Every moment is a gift.” I said.

“But to live with both! That shouldn’t be possible.”

“Yet here I am.” I said.

“I’m so very sorry.” She said, reaching out to touch my hand.

I shrugged. “It really is all good. I’m living my best life because of and in spite of the MS. I just gotta sparkle.”

She smiled at that. I’ve been thinking of this conversation since I got home. I cleaned while I thought it over. I suppose for most people, hearing that someone has Multiple Sclerosis is a sad thing. I’d like to think I have her empathy rather than her sympathy though.

I think people need to change the way they think of those that are disabled. We don’t need your pity or your sympathies. But if you could try to learn, try to understand what we go through, that would be awesome. Empathy rocks.

I figure that regardless of what we have to live with, we decide to live. We look at the sometimes impossibly huge mountain in front of us and say “Screw you!” and either climb it or find a way around it.

I’d like to change people’s reactions to letting them know that I live with a disability and a disease. Instead of getting offended, I take the opportunity to talk about my disabilities, to educate others. How will they learn otherwise?

We are not brave. We are courageous. We are purveyors of our own bodies as we try to make sense of the world around us, even as the world within us changes shape.

We are warriors.

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Disabled and Fabulous

61IpxC8NQlL._SX425_I’ve come to realize that sometimes, I have to look at things in a different way.

Recently, I experienced what is known as ableism. I was asked why I was taking the elevator when everyone else was taking the stairs. “It’s just four flights of stairs, Jamieson.” They said. “You don’t have to be so lazy.”

I laughed it off and briefly explained that going down stairs is almost impossible for me as that relies on my balance and co-ordination. I can do it, but it’s difficult. They nodded, but I could tell they didn’t get it. I could see it in their eyes, that they were just agreeing with me so that they could change the subject.

I came home and realized that the comment was still bothering me. I wasn’t angry, not really. I realized that it was acceptance of something I had long denied: that the world is made for the able bodied.

Before this, I had never really considered myself disabled. Now, I know that I am disabled and that I carry a disease; I live with my cerebral palsy and multiple sclerosis every day. However, I do everything I want to do, it just takes me a little while.

Having someone call me lazy because I took the elevator was like a slap in the face. That wasn’t the only occurrence, though. While out and about the other day, I had no choice but to go down a flight of stairs. I did so, holding on to the railing. A man saw me and asked, “What’s wrong with your legs?”

“I’m disabled,” I said quietly. It felt odd to say that word, but it was the quickest way to get the man to understand. “I have multiple sclerosis and cerebral palsy.”

“Shit.” He said. “That’s worse. I just thought you were injured.”

This brought home something for me. It had never occurred to me that I “looked” disabled, that my walk could make it that evident that there was something wrong with me. I had always assumed that my walk was fine, that it even passed for someone who wasn’t disabled.

This, paired with the elevator incident, really made me stop and think about who I am and what I carry inside me. I always try to avoid the term disabled and even go so far as using the term “differently abled”, referring to the fact that I lived beyond my disability.

I stopped and thought about it and have been doing so for the past week. In the end, I’ve come to the following realization: the disabled people that I know are some of the most amazing people I know. They live despite limitations, boundaries or borders that they face. They live when there are challenges, they face every day, be it doors, walkways, roads or transit that was not made for them but instead for our able-bodied brethren.

Yes, I live in a world made for others, created for those that can walk with no issues or no limitations. Yes, I live in a world that often doesn’t stop to consider what disabled people have to go through every day, just to live their lives.

And yet, they do so with courage and verve. They do so because they know of no other way. They do so because they want to live and to prove to all those people who tell them that they can’t that, in fact, they can. They are some of the most amazing people I know. They own their disabilities completely.

And I am one of them.

I wear my disability openly on my skin and within my bones. You can’t see my disease but it’s there. I live with a physical disability and a disease and I am proud of who I am. I am proud of everything that I accomplish.

So today, I tell you this: my name is Jamieson and I’m disabled and fabulous.

And I fucking sparkle.

 

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Please Help Save the MS Clinic!

MS Clinich tweetI learned something distressing before the MS Walk began this year.

The MS Clinic at the General Hospital could close in five days due to lack of funding.

This can’t be allowed to happen.

I can stress how amazing the MS Clinic has been to me since I was diagnosed with Relapse and Remitting Multiple Sclerosis six years ago.

When I first started seeing them, I could barely walk and was doing so with the aid of a cane. I was weak and tired all the time and had no energy and lived with vertigo and nausea, bladder problems, difficulty speaking and shaping words, bone crushing fatigue along with a healthy dose of brain fog. I didn’t know where I ended and the MS began. To say that I was lost is an understatement.

The Ottawa MS Clinic changed all that.

I remember my first visit with a neurologist. He was kind and gentle as he took me through a series of exercises that would set a baseline to measure my progress against. The entire time, he didn’t look at me like I was something to be frightened of. He actually listened to me and treated me with respect.

What’s more: he heard me.

He listened to me and everything that I have been through. He paid attention to my experiences with MS and then he told me that with care, we could learn to fight against the disease that raged inside my body.

This was the first time seeing a doctor that I was actually heard, that I was treated as if I knew what was wrong with my own body. I have been going to the Ottawa MS Clinic for six years now. The care I receive has only improved.

I am overjoyed every time I get to go in and see my current neurologist. I love her that much. Seeing her is a joy and a privilege. It’s as if I’m going in to meet a cherished friend every six months…because that’s exactly what I’m doing.

My neurologist has been with me through the highs and the lows of living with my disease. She has been a guiding force in how well I’m doing today.

Case in point, when I walked the MS Walk last year, it took me an hour and a half; this year I did it in an hour and ten minutes. I am stronger because of the clinics care and it can’t be allowed to close.

It’s not only me though. There are 3,500 patients (myself included) that receive the care and help they need from the Ottawa MS Clinic. If it closes, the closest MS Clinics are in Toronto and Kingston and there is an eighteen month wait to see a neurologist.

I would not get the kind of care that I do now if I had to travel to Toronto and Kingston. They wouldn’t know me and I would become just one in many, reduced from being a person with a heart and mind to just one amongst a crowd.

The Ottawa MS Clinic is looking at closure due to cuts in budgets and staffing made by the Ontario PC Government, led by Doug Ford. This cannot be allowed to happen. Too many people depended on it for the care that they give.

I, and the 3,499 other patrons of the Ottawa MS Clinic, need your help

There are a few things you can do.

There is a petition that you can sign and share to your social media to make sure that other see it and sign it. You can find that petition here:

https://www.change.org/p/jack-kitts-save-the-ottawa-ms-clinic?recruiter=false&utm_source=share_petition&utm_medium=facebook&utm_campaign=psf_combo_share_initial&utm_term=share_petition&recruited_by_id=ba5da9e0-6a71-11e9-bcd2-d15e26028b0a&utm_content=fht-15196736-en-ca%3Av2

You can also email the people that hold the Ottawa MS Clinic in their hands:

President and CEO of Ottawa hospital at jbkitts@toh.ca

Chief of Staff of the Ottawa Hospital at vroth@toh.ca

President and CEO of the Ottawa Hospital Foundation at tkuke@toh.ca

Minister of Health at christine.elliot@pc.ola.org

You can also tweet your MP and your MPP like I did (see picture). In short, we all have a voice. It’s time we used it and spoke loudly and clearly so that we don’t lose the vital services that the Ottawa MS Clinic provides.

This really is about quality of life. Use your voice, speak up.

Please.

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We Are All Rock Stars!

The Wolf PackI did my sixth MS Walk on Sunday April 28th. I walked 5KM with my team The Wolf Pack in an hour and ten minutes! That beats last years mark at an hour and twenty minutes! Holy crap, I’m a rock star! I couldn’t have done it without my team. I am more grateful to them than I can say.

Together, we raised $2,325 that went towards research to help find a cure for Multiple Sclerosis. I am so proud of my team. We are all rock stars.

To think that the first time I did the MS Walk, doing 3KM took me an hour. Now I did 5KM in a little over an hour. That Is just awesome.

I can’t wait to do the walk again next year!

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The Fractured Mirror

Small mirrorYesterday, while I was enjoying a hibiscus tea and a salad at the local mall for lunch, I began to have problems with my eye sight.

I started to see semi-opaque white dots appear around my field of vision in both eyes. I took off my glasses and cleaned them and put my glasses back on; the dots were still there. They began to flash as they moved across my field of vision and I was unsure of what was happening, of what was going on.

I remember thinking “Shit, my eyes have never done this before” before the blurriness kicked in. I could hear a child laughing and looked up to see the hazy form of a girl sitting close to me, turned around in her chair. I could hear her laughter and knew she must be smiling because of it, but I could not see her face. I will always remember her and the face I did not see.

I decided to go, that I had to get my coat and go home. I stood and as I did so, my vision changed again. It was as if my eyes had become funhouse mirrors. My eyes work independently of one another and each eye had its own mirror to look through.

Things were blurry but also distorted. The people I could see walking in front of me were cut into pieces, their bodies arriving in my vision sooner than their faces. Other details were blurry, as if my eyes were experiencing sensory overload and had just started to shut down and, amidst all of this, those slightly opaque white orbs.

I’m still not sure how I made it to the second floor. Everywhere I looked, it was as if the mirrors within my eyes had become even more fractured, as if the glass holding the silver had broken. I took my steps carefully and I moved slowly, wondering if anyone around me could sense that something was off about me.

I had a brief notion of going outside for a breath of fresh air and moving on to a different mall, but I had no idea how long this would last or if this would in fact become permanent. I did the only thing that made sense: I sat down and called my husband. He told me to call my parents while he drove back from Kingston. I called my parents and sat where I was to wait for them to pick me up.

I was going to text my husband, but I couldn’t see the words and couldn’t type on the small keyboard of my phone, so I called him instead, pressing my finger to his picture and then hitting the option for mobile. I did the same for when I called my Mom.

While I waited, I meditated on the inside. I tried to remain calm and centered. I can deal with the big things that life throws at me, but I have trouble with the little things. This was obviously one of the big things, something I didn’t have any control over. I sat and tried to look at my Kindle. I could see a cloud of words in front of me but couldn’t focus on the words I wanted to read within that cloud. The same thing had happened when trying to call them before. I just sat there and looked down and tried to remain calm.

By the time my mom had arrived, it had been about an hour and a bit. My eyes gradually cleared, bit by bit. The semi-opaque dots were gone and the fractured look had lessened, leaving me only with slightly blurry vision.

My parents took me to the hospital where my mom explained my medical history to the emergency care nurse. We were triaged in and then began the waiting. Gradually, my eyes became clearer so that I could see without too much blurriness. By the time my husband arrived, they were at almost full sight.

My parents left and my husband and I waited some more. I was visited by two nurses that took measurements and tested my eyes and gathered info for the doctor. When he finally came in, he could tell me…nothing.

He said that if I had had the white spots in only one eye, that that would signify something concerning multiple sclerosis. As it was, the only thing to do was to go home and to go in if it happened again.

Not the best medical advice I had ever received, but not as bad as it could have been. After nearly six hours at the hospital, I was allowed to go home. Today, that ten percent of my vision that had been missing gradually got better. The blurriness went away and now I’m seeing at 100% again. I’m not entirely sure what happened but will remain alert if anything changes. I have an appointment with my neurologist on the 17th of April so we will see what she says.

In the meantime, I will just sparkle on!

 

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Little Yellow Magnet – Available Now!

little-yellow-magnet (1)I’m thrilled to announce that Little Yellow Magnet is AVAILABLE NOW! Isn’t that amazing?

Here’s a bit about the book:

Life can change in an instant. Jamieson learns this the hard way.

 

Waking one morning to find he has little-to-no motor control, Jamieson only wants the world to return to how it had been before. After a diagnosis of Multiple Sclerosis, he thinks his life is over. What he doesn’t know is that it’s only just begun.

 

Trying to navigate through the world in a body he no longer understands, Jamieson must travel through the dark forest of depression while waging a constant battle against himself. Over time, he learns what he’s truly capable of, and what it actually means to be courageous.

 

Follow Jamieson as he loses himself…then discovers who he is really meant to be.

You can find Little Yellow Magnet here:

Paperback (Canada): https://www.amazon.ca/Little-Yellow-Magnet-Jamieson-Wolf/dp/192810116X/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1551834431&sr=8-1-fkmrnull

Kindle (Canada): https://www.amazon.ca/Little-Yellow-Magnet-Jamieson-Wolf-ebook/dp/B07PCSC3G4/ref=sr_1_fkmrnull_1?keywords=Little+Yellow+Magnet+jamieson+wolf&qid=1551834431&s=gateway&sr=8-1-fkmrnull

Paperback (US): https://www.amazon.com/Little-Yellow-Magnet-Jamieson-Wolf/dp/192810116X/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1551834500&sr=8-1-fkmrnull

Kindle (US): https://www.amazon.com/Little-Yellow-Magnet-Jamieson-Wolf-ebook/dp/B07PCSC3G4/ref=sr_1_fkmrnull_1?keywords=Little+Yellow+magnet+JAmieson+Wolf&qid=1551834500&s=gateway&sr=8-1-fkmrnull

Kobo: https://www.kobo.com/ca/en/ebook/little-yellow-magnet?fbclid=IwAR1slQgPiaZ5aVucJDH-4tPH4KGOHOZwcbkevj5_zSSy3qRwM61fty55ykw

I’m thrilled to be able to share this book with all of you. Stay tuned for more details of upcoming events!

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Little Yellow Magnet – It’s Almost Here!

Ilittle-yellow-magnet (1)t goes without saying that Little Yellow Magnet was a difficult book to write. It was also the most rewarding.

When I first started writing it, I called Little Yellow Magnet my little book of positivity. The idea behind it at first was to write about the positive moments during my journey with multiple sclerosis. The only problem was, I only got to page twenty-seven before I realized I was going about it all wrong.

From the moment I woke on January 31st, 2012 with my body no longer my own to the moment I had the idea to start writing about it; well that was all part of my journey. To focus on only the positive elements of that journey would be doing myself a disservice.

Every step along my path, every moment until now was all part of my journey. I couldn’t just write about the part of it that left me elated. I had to write about everything. This filled me with some trepidation.

Like every writer, I put myself into everything I write. Certain characters are based off of me or events that happened in my life are used in my books. However, that is all done with the smoke screen of fiction. I’m a bit more open when I write poetry, trying to make sense of something, but there is always some sort of poetic licence there.

With a memoir, it would be me on the page with no smokescreen, no great giant head of OZ to hide behind. It would be me, completely and in truth. That was clear to me. If I was going to write this, if I was going to go down the road that I have travelled, there would be no sugar coating of anything.

I took a moment to pause before I put my fingers to the keyboard again. My journey deals with a lot of other issues other than my diagnosis of multiple sclerosis. It talks about already living with cerebral palsy, mental abuse, depression, suicide attempts, dating in the gay community while also having a disability.

I had good long think about whether writing it would be a good idea. I came to the conclusion that, at the very least, it would be a cathartic release for me, a closing off of one chapter and the beginning of a new one. Then, if I did decide to publish it, my hope was that it would help people. There are so many others that are dealing with so many things I’ve touched on in Little Yellow Magnet: dramatic changes, disease, depression, abuse. If the book helps even one person, than that makes everything worth it.

Ultimately, the book is about what it took for me to surmount all my challenges and choose to live. Make no mistake, despite the subject matter, Little Yellow Magnet is about what it took for me to try and live a better life by honouring the life I had, no matter what it involved.

I learned a lot about myself through the writing of Little Yellow Magnet. Having my journey laid out on paper, it was impossible not to. I can’t wait for you all to read it yourselves. It seems amazing that the memoir is almost a reality and that other people will be able to read it.

It’s not that long away now. I can’t believe that, after a year of writing and a year of exits and preparation, that Little Yellow Magnet is almost here. It’s available on March 21st, 2019.

Thanks for being part of the journey.

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