I may not be co-operative because of my illness. If you have to treat me against my will in any way remind me that you have my best interests at heart. I may not be able to see how it is best but if you have gained my trust I will be more willing to listen. If I must be restrained physically, or mentally do your best to comfort me beforehand. If it happens I will panic and struggle less. You may need to do to me things that are in my best interest. If I have your respect I will be more willing to accept treatment and your recommendations.
You may be the only one who can comfort me, so try. I may have fears in the world some which may always be there, so make my stay in your care safe. I may need shelter for a while. Make that shelter as much a home for me as you need when you don’t feel well. How I live can be rearranged but ask me what parts I need to remain and am most comfortable with, if I can keep my comforts I am less afraid of what might be happening to me. If I am in hospital, I have lost much of what I recognize. Explain to me why I don’t have certain freedoms. If I can understand why I must live with certain conditions I may be more accepting of them. If I can accept some of my struggle I will have more energy to improve.
To be listened to and witness being heard is a way to empower clients. If you don’t want me to feel like a prisoner let me be heard. Even if what I say makes no sense, I will feel like a human if I know I have been heard. My voice may be the only shred of control I have. I may be experiencing symptoms that sometimes scare, worry or interfere with how I might otherwise be. If I can have control over more of my present circumstances I can at least take comfort in that. If you let me experience life while still allowing for safety, I can better navigate the world when I experience symptoms on the outside.
This may lessen the problems with disempowerment among mentally ill patients. I will see you as an equal who is a professional with skills that are meant to help me. If you treat me with respect you will not be that nurse or that doctor you will be someone who I can trust. If I trust you I will be more co-operative in my treatment lessening the need for coercion or even force. If I can trust one person I will not feel as isolated as I may be. Sometimes you will be the only one that I have much hope of receiving respect from.
Do not point out too much good when I feel bad, respect where I am at. I may be an inpatient or an outpatient but my impression of life is reality for me. Many of us are fragile in moments we would not otherwise be. There may be no cure but I am not a stain on the floor. I am not something to be stared at and I shouldn’t be avoided. There is nothing about me that will infect you other than my humanity and humour if you let it. I bleed red, have the same senses as you (sometimes more) and can interpret some situations in a fashion very near your own. My tears and frustrations are real to me so respect them. I may not be rational in my responses and emotions but that does not make what I feel unreal. I may be unaware of some things that go on around me but I am acutely aware of others. Leave your fear of catching what I may have at home.
During visits in jail lives are sealed from one another. Plexiglas prevents the intimacy of a regular exchange. No kisses, no hugs, no handshakes. Hands pressed on each side of the glass provide only a symbolic gesture of love. In time this was to become a powerful symbol and part of my goodbyes. I have seen friends, my brothers, my mother and step-father, my sister-in-law and even my infant niece on the other side of the glass. I have been manic, psychotic and sane on the other side of the glass. I have had hair, no hair, no eyebrows and beards on the other side of the glass. I have been depressed, euphoric and beating myself with the phone on the other side of the glass. I have been strong and ready to give up on the other side of the glass. I have been through hell on the other side of the glass but you have been there to see me. To witness my world and acknowledge me as I am. You have been there to see me; to see me through. All the while we were kept at a distance we became closer and grew strong together.
I walked to the pharmacy yesterday. I usually try to say hello to the people I meet when I’m out. I’m from a small town and live in an area with a small town identity within the city. The first person I met was a young man. I kept to my side of the walk and was glancing at him for eye contact. When the appropriate distance arrived and I was about to say hello he pulled out his cell phone to take a glance. I was blocked. On my way home from the pharmacy I was approaching a young woman. As I got nearer I could see the wires dangling from her ears. How do you say hello to someone listening to music? My next encounter was with an older woman. She was tiny and had on a bundle of clothes unnecessary considering the spring weather. I said “hello” and she quickly replied “have a good day and God Bless.” It wouldn’t surprise me if she doesn’t even own a cell phone or iPod. Some would say she has not embraced technology or is at least behind the times. She was unable to avoid my act of civility. She had to acknowledge me and in the process she was acknowledged. I don’t have a problem with technology but like the woman, I don’t have a problem without it.
July 30, 2006
A void threatens to overwhelm me.
I search for meaning in the meaningless.
I distinctly remember a different perception of reality.
Without another word everything is swept away.
No passions at all; the beginning of hunger.
This state of suffering, an invisible pull.
Movements become orchestrated by sorrow
My world aches, I bask in darkness.
Numb thoughts; tears that fail to fall.
Will I emerge from the dark place?
In the things you have me do let some of them be my passion. My passion might be as simple as eating ice cream or as complicated as Classical guitar. If you have listened to me or watched close enough you may even know my passion when I don’t or can’t. Encourage me to pursue my passion it can help build meaning about things I have yet to understand and at the very least will bring me moments of pleasure. I have talents and likes. Find ways for me to experience them. Even though I am ill I can still experience pleasure. Don’t always assume your ideas of pleasure or treatment are mine. Ask me.
I was at a restaurant and a man opened his trunk and began to assemble and adjust a mobility scooter. I was eating and didn’t see everything but the next time I looked he was bringing a walker to the passenger door. I thought I never want to be someone who needs a walker to get to a scooter. Next I saw a woman emerge and use the walker to not get into the scooter but to walk right past it and into the restaurant. Someone opened the door for her and she was in a seat behind me. Her husband finished putting the scooter away and was joining her as I left. He seemed a devout man but he had apparently failed to ask or listen to what she envisioned for her progress. Had he known he could have actually helped when she needed the door opened. At the very least he would have stood a chance at beating her to the table.
Being in the Forensic system is often an immersion in powerlessness. For many Forensic clients there is no choice in where you live, the food you eat or even who sleeps beside you. You are told when to awaken, when the lights will go out and when you may eat. Much of what you experience is dictated by others.
There is no cure for this state. You can`t think, talk or buy your way out of your situation. You can`t call on family and friends or politicians and priests to deliver you to autonomy. At times escape seems to be a huge secret. It`s like someone has just snapped your photo as you stagger about trying to cling to the life you had before the flash went off.
If you are going to help me as a team, include me as a member if I am able and willing. You work in teams but I feel I am not a member of that team. If I am not a member of my treatment team I feel I am not a part of my treatment. If I don’t feel I am part of my treatment it seems as though things are done to me rather than for me. This is disempowerment; to have things done to you without voice.
I have questions and fears about my diagnosis just like society. Share with me what you know about people who I have common symptoms with but also share with society the things you know about me as a person. If society knew more of our individual humanity it would help to reduce the stigma which is a major barrier to recovery. Please remember that how you diagnose me will have an impact on how I am treated. Not only the treatment that is meant to help me, but also the treatment society imparts on me. Please attach to me words that will help my family, peers and society recognize me as I was and hopefully can be.
I may not have fashion sense or much sense at all. I may not have your
intellect or possess much of what you find important but I can recognize
a good person. You or someone you love could easily be where I find
myself. Whatever the differences between us, we can share in the fact
that mental illness is indiscriminate. I may get healthy again and be
where you are or you or someone you love could join me wherever it is
you find me. It may be a chromosome but at this point in time we are
equally vulnerable. If you view this illness as a result of cause and
effect or where I have been a product of my environment please know that
it was not all of my own design. I did not choose where I was born, when
I grew up and there are a multitude of events I had little control over.
There may be reasons not to like someone but your opinion shouldn’t be
one. There may be many reasons I am unwell, please don’t be another.
I think that if Health Care Providers learn to separate me from my
illness the majority of your treatment of me will be therapeutic to my
rehabilitation. If you see me as a person and recognize our common
humanity there should be little reason for lessons or tests about how
to treat me. Hopefully you will treat me as you do most people in your
There will often be people who misunderstand and therefore mistreat me.
Often this will be as a result of the stigma that accompanies my
diagnosis. If you do not separate me from those ideas and thoughts, you
will be nothing more than a stranger in my treatment. If you can’t
separate me from my illness I can’t separate you from the rest.
Trust in the fact that although I may be symptomatic I can see, hear
and feel. What you do or say, or do not, impacts me in the same way it
would if I was well. Even if I see, think, hear or feel things I
shouldn’t, you can have an impact on my reality. I may not want to
talk but that does not mean you can’t speak to me. I see, hear and
feel what you say and do.
At times your words and actions are all the hope I have.
It’s fall and I was driving home from my presentation in Ottawa. The birds were flocking up as they have for eons. I love to watch the smaller birds that fly in swarms of unison. They seem to all turn on a dime and take instant direction from one another. Humans are similar. We move in unison to an extent. We take direction from others on what to wear, whose music to listen to, what behaviour is appropriate etc. Go to a stadium and watch “the wave”; not much different and maybe it’s as fun for the birds.
What’s most interesting about all this unison is that there are always a few birds that stray from the flock. We don’t call these birds by another name, a sparrow is a sparrow whether it’s flying in formation or not. Why is it we label people who travel outside societies bounds other names. Weirdo, rebel, bi-polar, psychotic, criminal… Is a human not still a human regardless of the path they are on??