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This is written from the other side. It has been almost thirty years of agonizing pain and the most severe insomnia that a renowned sleep specialist has ever seen. These last five years, however, I walked through hellfire. Look through my window of perspective and read on, realizing it’s you I’m talking about. It’s all of us.
I want anyone who is struggling with anything at all to read this and know that they can get help, because it is possible to fabricate the strength to push through the deepest of adversity.
I will interchange “me” with “you” as our relatable example, because remember, I am also you.
I am energetic. I fervently crack jokes, and I am constantly grateful that I AM ALIVE. I let it show. I always seem very happy to people who don’t know me. I am especially comfortable with strangers because they are a blank slate for me just as I will be to them. I try to erase anyone’s discord with humanity with each new interaction. I refuse to see anyone beaten down. I connect whenever and wherever I can to anyone in need because I learnt the hard way, as most lessons come, that this is what you have to do in this world. Connect or die.
You must refuse to be told to smile in a moment when you are unable, in a moment when you need to be heard. You must refuse to be told to smile when there is knowledge that you have already spoken up to professionals, to family or to wonderfully cultivated decade-long friends. You must not allow yourself to be rejected by anyone for doing something like managing your health with limited resources, and prioritizing that before everything. This is a commitment you have made and have to make every day, no matter the cost, because without health, YOU WILL DIE.
We all need to work. But if you are in a situation where you don’t manage health in tandem with work in a balanced way, or if you have been broken from work or abuse, or abuse at work, you will work yourself to death. You will become more sick, and then you will die. Without health, there is no life.
Let’s talk about the healthcare system. Mine is supposed to be one of the best in the world, the Canadian healthcare system. To be idly and repeatedly told you’ve “fallen through the cracks” is devastating beyond measure, especially after being extremely aggressive about managing your own care. To lose work, time, and massive amounts of money, to lose jobs because you are focusing on retaining any modicum of existence, to keep physically breaking yourself because you just have to work, is not free healthcare. Nothing is free; there is no adequate care, and then there is no health. I’d rather pay a devastating sum to be back on my feet, to rejoin society as the talented and capable human being that I was before seeking help. I’d love to be able to afford the option to buy time, to buy life. To be Humpty Dumpty put back together again.
Being repeatedly told to wait to be connected to nothing has cost me life, and with this, health slips further away. Support circles spiral further away, and doctors grow wary of your persistence. You get sick of yourself. Even though you remain focused on anything outside of yourself, you are constantly blinded or blindsided by pain, and cannot always see through it, even with the strongest of intentions, or following the most inspiring of examples.
“Am I sick because I am not supposed to be here?” you ask yourself, having tried everything, having repeated yourself hoarse.
No. The answer will always be no. Because you are here, you fight.
For most, speaking up even once takes unfathomable courage, especially after constant rejection of your legitimate issue. So, whatever the feeling or issue, dismissal can feel like a death sentence. You may have spoken up at the wrong time to the wrong person. When you are scared for your life you will try anything. These failed tries can have devastating consequences.
I have come to terms with a “system” that doesn’t even exist.
But you see, I still exist.
I have also come to terms with the fact that existence is a balance of fighting and finding a way to be at peace with extreme pain.
But not all of us have remained here to fight.
Why do we fight? What are we even fighting for if there is no connection to a toolbox that unglues our feet to finally put one tortured sole in front of the other and begin yet again, but gladly? I fight every day for me, and for you, but also for my friends and family who don’t exist to fight anymore.
Let’s talk about the negligence of health practitioners and social circles alike. Let’s also talk about the repeated dismissal of a legitimate frustration that nothing is being connected medically, no matter how aggressively it is sought. This dismissal of extreme pain from illness could be mental, neurological, or physical. It could also be all three at once if the struggle has continued long enough.
The fear of not being taken seriously is real when it’s all you’ve continued to receive, no matter how loud your roar; how quiet your feeble whimper.
When you are told “enough, already, I’m tired of hearing this,” a door slams shut. A lifeline is gone.
Being told to smile is a dismissal of one’s actual capacity to deal with real, life threatening problems. Not hearing that you’ve done everything you can, or that you’ve connected yourself to every resource and person who have all somehow continued to fail to do their one job, which is make the damn phone call, or use their supposed brilliant medical school Powers of Deduction — to be thorough for once — causes us to slip away, as we are casually told we have “just slipped through the cracks.”
I was even promised when I was seen by a crisis counsellor at the institution where I was born—promised—that “I would not slip through the cracks here.” These promises should be illegal. Can you guess what happened? That promise was broken.
So I picked up my seemingly intact life and tried again in another town. Two and a half years later, I’m about to move again, and can you guess why? These are not cracks. We are talking about chasms.
You and I are not file folders that accidentally fall in the trash. We are not on this earth to slip away, to be abused, to abuse each other, or to be tormented by repeated dismissal. Anyone can tell me to take an Advil. Anyone can tell me that I’m young and should be fine. To just go home.
These are not solutions.
Human beings exist because of and for each other. We are here to lift ourselves and each other up to achieve the most brilliant, unheard of things. We are here to create communities that are built on compassion, on loving kindness, with the aim to see and help each other succeed.
To connect with the world and to move forward. Together.
I’m sick of #BellLetsTalk.
How about #BellLetsConnectThoseInDireNeedToSpecialists?
How about #BellHowCanWeBetterModerateLevelsOfMedicalUrgency?
How about #BellMentalHealthisPhysicalHealth?
How about an actual #BellActionPlan? How about #BellLetsListen?
Years ago, when I called the Suicide Hotline several times, on different days, at different times, do you know who was on the other end?
No one. Then I was disconnected.
Enough of this.
Here is my solution: being aggressive with your care is paramount to your survival. You will find a source even if you have none or exhausted all, because you will make it up. Remember make-believe when you were a kid? You must employ that term again. You must fabricate the energy, make it real, and believe it exists. You are still that same kid and therefore still have the power to actually believe in something that isn’t there, because it is what you need to keep putting one foot in front of the other. It’s the only thing that will make you better. To make the shitty phone calls and appointments, to go through the repeated humiliation, and to make the choice to stop perceiving it as humiliation and start seeing it as massive accomplishments. Pretend you are building your personal energy well. Anything to keep you moving.
Even if you can not move, you can move.
You are stronger than you think.
Compassion and community is the key to helping someone, so never tell someone to smile when you know they can’t.
Don’t just tell them you are listening if you are telling them to smile.