How I Knew

 

I asked if I had changed your world?

I needed to know I had left a mark somewhere on someone—I needed to know that my existence had not gone unnoticed.

You said, “No; not really. If you were to leave nothing would change.”

And that was how I knew that we would never last.

Dealing with so much pain is exhausting. EDSer’s do you ever feel like you just really need a break from it all? Do you ever feel hopeless? I’m currently in my neckbrace. I’ve been using my wheelchair. But still, it’s barely helping. Well, I can sit up again, which is an improvement from an hour ago where I couldn’t move because of the pain. I’ve also been trying different pain meds but nothing is working. The pain is excruciating. And, I’m just really tired…really sad…exhausted.

The sheer amount of pain, the ever-growing lack of answers,  all of this is leaving me feeling hopeless.

Light Up the Dark

I’m overly sentimental.

Sensitive.

Empathetic.

An old-school romantic (in some ways).

I’m a feminist. Have been since age 7.

I’m not just one thing. I’m many.

I value knowledge and compassion.

I care too much. About everything.

I’m a patient.

At the moment, my chronic illness has become more debilitating with each passing day. I’m in a wheelchair a lot of the time, at home more of the time. But, I’m not only sick.

I’m complex.

I love solitude. And rainy days. The smell of old books.

I love being in libraries but I don’t actually like taking out books–I prefer to purchase my own, I’m creating my own library.

I would rather spend time with people who care about the world (and the people in it) and I’d rather talk about things that matter as opposed to the trivial mundane things.

I do what I can in my small corner of the world, to change it for the better.

I do what I can with what I have and that’s the most any of us can do.

I am changing the world.

I believe in equality for everyone–everyone meaning every person no matter their creed, ethnicity, beliefs, sexual orientation, ect. I believe you should be free to express yourself but I also believe that the moment your actions start hurting someone else-infringing upon their basic rights, you forfeit yours. People should be free to live their lives how they want as long as their lives don’t hurt others. I think the distinction between animals and humans is silly-we’re all animals, get used to it. They’re no less important than, or worthy of, respect and dignity than humans are.

I believe in hope.

Because when all else fails it’ll still be there for you.

I believe in magic–most people can’t see it, but it’s around us every single day. It’s what gives us life and love and hope.

I strive to live in a constant state of wonder and encourage others to do the same, because you can either go through life believing nothing is wonderful or miraculous or you can believe that everything is. To be alive is a gift. People too often forget that. I believe that everything has purpose.

Any suffering and adversity can be overcome if you just have the drive to keep fighting.

Sometimes putting one foot in front of the other is the hardest thing you’ll ever do.

Every person has something good to offer this world, you just have to try and find out what it is, and the pursue it with a fiery passion.

I am a writer. One day my books, my stories will inspire others. They will provide comfort to those who need, they will give you courage, and when you need it, they will be a safe haven from a scary and cruel world.

Stories are the reason I’m alive.

The power of love will win, in the end, because if it hasn’t won yet-it isn’t the end.

You should never compromise who you are for the sake of another. Be who you are and learn to love yourself as you wish to be loved by others. Live your life authentically. Be you. Do you. Be happy when you can but don’t turn a blind eye to the suffering and the pain all around you.

Everything that has been going on in the USA is terrifying–to some more than others, and it’s wrong. The bottom line is simple; we have to do better than this.

So, each and every day live your life and strive to make this dark world a little brighter.

We all have the power to change the world.

We all have the power to stand up for ourselves or for someone else. And everyone needs help. In too many ways, this world is broken. But we can fix it. Just start by fixing yourself.

You–YOU–have the incredible ability to lessen the suffering and the pain of others in this world and that’s what matters the most. No one should have to live with (or in) pain–I know this from personal experience. So use that power and change the world.

We have the power to change everything, to do better than those who came before us, and to create our lives the way we want them to be. So do it.

Be kind.

Have compassion.

And light up the darkness.

Fear and Chronic Illness

First the fear comes when the symptoms start and they don’t go away. Next they get worse. Which makes everything worse. The fear intensifies when you continue to get sick and all the doctors tell you you’re going crazy.

There is a constant fear of not knowing your body’s next move. Not knowing if you will wake up the next morning, and not knowing if you’ll drop dead at any second. You may think I’m exaggerating but I’m really not. All last year I spent the majority of time terrified of the next moment, the next second, the next symptom or episode. I spent the time believing I was going to die.

 

That is what it is like to live with fear.

 

So, say you get through that.

You don’t die. You figure out what’s wrong with you. You start seeing the right doctors, the specialist’s down in Toronto that if you lived in America would cost a small fortune. The Canadian Health Care System is far from perfect–too many of us have to wait too long, too many of us go undiagnosed, or misdiagnosed for years. But given all it does for the majority of people (those people not being the type with rare and confusing diseases-only half the medical community has ever heard of) it is good–much better than the American system.

So you start to get better-you can walk again, you aren’t passing out once-twice-three times a day. The pain is still ever-present, always there, a shadow that follows you-the depression is if not harder, than as hard, as the illness itself–though in some ways they are one in the same, but still you start to get better. You start to look at starting school again. You start looking towards the future. You start convincing yourself it’s safe to live again…trying to at least, and then comes the day, where the symptoms are getting worse. The disease is running rampant. The pain is all consuming, and not controlled, and even though it wasn’t controlled beforehand, it’s getting harder and harder to deal with.

That’s the day you have to face the reality that you’re getting bad again and the fear that had abated to a slight hum in the background of your mind, comes back, full force like a depressive episode that creeps up on you so slowly you don’t see it till it’s already there–haunting you.

Fear is something we have to live with when we have a chronic illness. I wish I could say it goes away but I don’t know if it does yet. I don’t think it ever fully goes away because I remember these feelings all throughout my teenage years–starting at thirteen when I believed I wouldn’t make it to see high school graduation, never mind graduate college.

I think the trick is to learn to master your fear. And to live each and every day in a way that ensures if you died tomorrow, you wouldn’t regret anything you did. That is a bold way to live. Harder than anything else when you are chronically ill, disabled, depressed, and scared of your disease getting worse. I have yet to master the art of living. And lately things have been much too hard for me. Slowly, my world has been closing in on itself, shrinking and becoming smaller, the trick is to fight against that. To not only hold onto hope as tightly you would a flashlight in the dark, but to remember to find the bright spots, even on the darkest days.

And the key to living with an invisible disability is to focus on what you can do. Focus on what you can do right now to make your life better–try not to let the fear of it all get to you, push back against it, master your fear so that it doesn’t master you.

 

That’s it for now everyone, just try to live life as best you can-that is all you can do and always remember: hold onto Kindness+Compassion+Love