Why I Don’t Use The Word Disability

We all have a few. Words that leave a bitter feeling in our gut when we hear them. For me, that word would be “disability”. Its not the word that irks me, it’s the negative connotation that comes with it. It insinuates that just because you have a “disability” that you’re somehow less than, or lower on the food chain because of it. You probably know from people who you’ve maybe encountered who were “disabled” that they are far from being less than the rest of society.

I’m a firm believer that each and every human being has potential. I don’t think everybody unlocks their potential, but its there. So when I see somebody or meet somebody who has a medical condition, my first question to myself is “I wonder what their potential is”. I don’t like to use the word disability because to me it feels like I’m putting somebody into a box, or building a wall around them. If you ask me the word, along with the connotation it carries, is disabling in itself.

What kind of a message do we send people when the way we treat people revolves around whether or not they have a medical condition? Are accommodations necessary? Yes, but so is equality. By equality I mean we don’t judge a person based on conditions, but on their merit. Everybody gets the opportunity they deserve, regardless of conditions, colour, sexual orientation, you name it. I’m not saying that people should be put on a pedestal. I’m saying we should be able to look at each other for who we are. Human beings.

Should the word be outright removed from the English language? I don’t believe so, but we should change the way we use the word. It should be used strictly in the medical sense, not as a club with which to bludgeon others.

At the end of the day, it is just a word, but as they say, “the pen is mightier than the sword.” To summarize, remember the Golden Rule. Treat others the way you would want to be treated.

The Pendulum of Mental Illness

It swings back and forth, side to side. Some days you’re at one extreme, other days you’re at another. But some days, you’re right in the middle, and life is good. Those are the moments to be cherished. What are these extremes you ask? Well the one, let’s say on the left side, is when things are difficult. Maybe you’re in hospital, maybe you’re experiencing residual symptoms, in short, this is the low end of mental illness, it feels like crap. Then on the right side, its when things are going a little too well. Maybe you’re lulled into believing you’re cured, maybe the treatment doesn’t seem so critical now, you’re on cloud nine. And then there’s the middle of the pendulum, that sweet spot. Where life is good, but your feet are still on the ground. Those are the days that make it all worth it.

So, what is it like on the proverbial left side? Well I’d say those are the moments that leave you feeling drained and helpless, maybe they make you want to scream out in frustration. Perhaps the left side leaves you wanting it all to just stop already. For many people, there are just as many reactions and responses. Many negative emotions and thoughts can crop up on the left side. Sounds pretty rough, right? Well, guess what? You know how a pendulum works? It swings back and forth, it never stops in any one spot for too long. That can only mean that we won’t be trapped on the left side forever, because we are gonna swing back into the middle and the right.

The so-called right side? That’s when things are going a little too well. Maybe you feel that treatment is no longer necessary, or that its all under control. This time its dealt with, the war is won! Or is it? It may not sound that bad at first but in my experiences its often a trap just waiting for me to walk through. SNAP. And then the pendulum goes flying back into the left side. It can be a pretty nauseating ride, that’s for sure. But have no fear! Because somewhere in between lies the middle.

Ahh finally, the mysterious middle. It’s the spot that everybody yearns for. Just what is the middle like? Well, its those moments that never seem to last quite long enough, yet they last an eternity. Its when it feels like you can handle tomorrow, because you handled today. It’s a difficult space to explain, the experience is different for everybody, but I can imagine that the feelings are nearly identical. Peace, serenity, and determination often arise from the middle. Bring it on mental illness! because we’re ready, we are no strangers to this fight.

Whether you’re on the left, the right, or you’re in the middle, just remember that “this too shall pass.”

The Therapy That Lives in Caregiving

Caregiving can be both exhausting and rewarding. Personally, I’ve found so much positivity through caregiving. Through being of service to my wife, I’ve found my voice and strength I’ve never thought I had. I’ve often wondered what my purpose in life was, and I feel confident in saying that helping my wife where I can has given me direction.

That’s not to say that caregiving is my sole driver in life. I’ve also found myself. Through being apart while my wife was in hospital, it gave me quite a bit of time to reflect on who I was and wanted to be. I’ve always had a constant desire to be helpful to people and try to assist in any way I could, helping my wife has given me an outlet to help and be of service to somebody.

Through my experience caregiving, my opinions and outlook on the world have changed dramatically. For the better I hope. Its made me much more compassionate and understanding towards others. In fact, its been my desire to help others that has driven me to begin this blog. Its been the hope that the experiences of my wife and I would maybe, just maybe, be of benefit to other people.

I imagine I’m not the only one who has found caregiving therapeutic. It can make you feel really good about yourself because you’re giving as opposed to taking from somebody. Plus, what doesn’t kill you can only make you stronger right? How many of us have had dreams growing up of wanting to be a hero? To help others when they need it? To give somebody else a lending hand. I grew up full of those dreams. Dreams of being a doctor, a firefighter, just a good Samaritan, and you know what? I’ve done one better for myself. I’m working with my wife to help both her, and our marriage to thrive.

I feel as though I am a gardener planting a lily. Gently covering it in soil and lovingly watering the seed, and then getting to experience the joy and pleasant serenity in watching this flower grow and bloom. Its an interesting thought because it doesn’t matter how much I water that seedling, it still has to break through all the dirt and pull itself up. Teamwork. I can’t just will that flower to grow, there has to be work on both ends. While the journey may be different for the flower than the gardener, they need each other. Because without the determined lily, the gardener’s flowerbed wouldn’t be the same, would it?

To all the lilies out there, Keep breaking through that soil so us gardeners can enjoy watching you thrive.

Hope: The Foundation of Life

Note: I am not a psychiatrist or medical professional. My experiences and opinions are due to having mental illness and living with somebody who has schizophrenia.

One of the most recurrent ideas that I’ve noticed on the journey of caregiving and mental illness, is hope. To never lose hope, to always hang onto it. But if we’re being honest, that’s easier said than done. So just what does it mean to have hope?

Having hope doesn’t mean that you never get frustrated or never fail. Having hope means that even when you fall from the sky and crash and burn, that you get up, dust off your wings, and take off again. Why do you rise again? Because you have hope. To me having hope means that you have a vision and a goal of where you want to be in the future, and that you strive for it. That goal is different for everybody and may change quite regularly, but the vision is usually similar. I think its safe to say that we all envision a better spot on the road than what we are on now. Maybe you see a better world for everybody, or maybe you just see another milestone to beat. Its not the surface content of the vision that matters, it’s the underlying drive, which for me, and hopefully for you too, is hope.

There’s always hope. Even if you can’t see any sign of hope, its there. Because even when you’re at your lowest point, there’s still hope. Hope that pain will disappear, hope that things will get better, hope that somebody will hear your SOS. I’m not saying that its all unicorns and rainbows and lollipops (I wish lol), but hope is the first building block of any great wonder. The Wright brothers for example, guess what made their dream possible? That’s right. Hope.

So just remember, if you’ve recently been diagnosed, that doesn’t mean your life is over. Is it a punch to the gut? It sure as hell can be, but its not necessarily the end. Maybe you’re having a hard time in recovery, maybe you’ve had break-through symptoms or another episode. You’ve been through it before, this isn’t your first spin on the merry-go-round. Just keep your eye on your current goal and never lose sight of your vision. Maybe you’re contemplating that lonely road that is suicide. If you are, I want you to know, and I mean this, you aren’t alone. And you know what? Every storm breaks. No matter how dark the sky may seem, it’ll pass. The sun always rises. All I ask, is that you have hope. Hope that maybe, just maybe, there’s more to life than this.

Stay strong friends, talk to you soon.

P.S. DON’T LOSE HOPE!

Marriage and Schizophrenia

What’s it like being married to someone with schizophrenia? Well I guess you could say its like any other marriage. It has its ups and downs, good days and bad days. but mostly, it has, and needs, lots of love and compassion.

Like any marriage, its not an easy road, but man is it ever rewarding. My wife is still my wife, as she always will be. Between the hospital stays and psychotic episodes, which are getting fewer and farther between, there are moments with just as much power and love and devotion as any other marriage. Some couples have to deal with financial issues, others the death of a child. For us its mental illness, and I’m alright with that.

My wife’s diagnosis allows me to be helpful and stand by her in a way that’s unique to our marriage and situation. I talk her through psychosis, I help her keep track of medications, appointments, and everything in between. I also take her to the movies because I like to (even if its romance), I like to drive around with her and spend time together with our families. Our marriage is just as unique as any other marriage.

Sure, it can be stressful, but stress can accompany just about anything and everything I do in life. We love doing things like going to the zoo, or going out for dinner. Honestly the only real difference is that sometimes we have to take extra precautions. For example, we have walked out of restaurants or movies because sometimes its just too loud for my wife due to her schizophrenia. Other times we have to be prepared for the possibility of something that may trigger an episode. But for the most part its just as unique as any other relationship. We live, laugh, and love together on this journey known as life.

Is marriage involving a “disability” (I quote the word disability because I find it misleading but that’s a story for another day) for everybody? No, everybody handles these sorts of things differently. But for us it works. If you are really in love with somebody and are willing to go to hell and back for happiness together, then go for it.

Tools for Caregivers

Many people talk about coping tools for those who have a mental illness. These are very important to know, but what is also important is what kind of coping tools are available to caregivers? Being on the flipside of the coin, caregiving shares many tools of self-care and also has several unique to the situation. Fear not for there are coping skills for all!

The first one, and for me at one point my least favorite, take care of yourself too. This doesn’t mean to just dump your child, spouse, parent, or other loved one at somebody else’s place and fly to Tahiti for a month. For myself it means to not lose myself in the role of caregiver. It means to make sure that I still enjoy a decent quality of life so that I can continue to be a good caregiver. For example, maybe I’m awake early and my wife is still asleep, what a good opportunity to read a book I’m into (or a mighty article? Lol). The point is that while we may be striving to be the best, we are only human and therefore can burnout. By taking care of ourselves AND our loved one we can hopefully avoid burnout and continue to be there for the ones we love.

Secondly, don’t lose your shit. This one is twofold. Say your loved one is having a rough day and says something you may find strange or rude. Don’t get hysterical over it. For instance, I’ve experienced a loved one saying some things that others could find disturbing, I just keep my cool, accept it as a part of their illness, and talk it out calmly. Also, sometimes people have a bad day, we are all entitled to them once in a while. Maybe your loved one snaps at you. Again, keep your cool. You can still be firm but be careful not to come across as confrontational or looking for a scrap.

Thirdly, Stay organized. I’ve found that one of the most beneficial things that I’ve done is to keep records of anything mental illness related. I’ve got a great big binder with several sections. Keep a record of anything that may be useful for reference down the road, appointments, questions and answers with doctors, and medications, that sort of stuff. Keeping a record of everything will make it so you don’t have to have everything stored in your memory all the time. Trust me when I say this one is critical.

Fourth, think about making a crisis plan. The crisis plan in our house consists of important phone numbers, medications and their doses, where to go, what to make note of, and some readings for people who may want to know more on how to approach a crisis. If you’re giving a copy to someone who may be spending any amount of time with your loved one, make sure they go over it BEFORE not when a crisis appears.

Fifth, I decided to buy a laptop bag for the big binder mentioned earlier. It works as a “survival bag” as well as a way of easily carrying the binder around. This also had the positive outcome of putting all the essentials for an emergency department visit in one bag. I highly recommend getting a setup where you can leave in a hurry and know you’re as prepared as possible.

Finally, Never, ever, EVER lose hope. Hope is the foundation of just about everything we cherish in this world. Plus, hope is contagious. So, in a nutshell, hope for the best and prepare for the worst.

While this is only my personal and limited experience, I do hope it is of some benefit to anybody who finds this article.

Things to Remember as a Caregiver

When one becomes a caregiver, no matter the reason, the amount of thoughts and information that bombards the brain can be overwhelming. Questions abound and worries and fears can seem to send one’s hopes crashing down. I’d say that these feelings quite often are normal. But with all the information at the tips of our fingers and coming from everybody from the doctors and nurses, to neighbours, and maybe even the family dog, how is somebody supposed to separate the critically important knowledge from things that can be figured out down the road? Well, there are several things that I’ve discovered and found to be particularly important to keep at the forefront of one’s mind.

Firstly, Mental illness is real. This may sound like a no-brainer, but because mental illness doesn’t show physical symptoms in the way that something like cancer or a broken leg does, it can sometimes be hard to accept and understand that it is just as legitimate and serious as any other health condition. Mental illness is not attention seeking, faking, or shameful. Its another condition and shouldn’t be seen as any different as other health conditions with regards to credibility.

Secondly, and this kind of ties in with the last one, when somebody is in psychosis and may be experiencing things we can’t even fathom, don’t forget that while it may not be “real” for us as outsiders, it is perceived as real for those that experience it. Let me tell you how utterly powerless one feels watching somebody suffer from psychosis. All you want in that moment more than anything is to be able to help that person, to bear the pain and anguish for them even, but you can’t. You have to just stand by and try to do damage control to protect the person until help arrives.

Thirdly, remember to keep calm. The way I say it is, pardon my language, but I can’t afford to “lose my shit.” When the person with the illness is already stressed and maybe getting upset, it doesn’t help if we as caregivers get all worked up. I’m not saying that its not stressful, but in the heat of the moment it is critical to keep cool and be the voice of reason.

Fourth thing, don’t expect anybody in the equation of mental illness and caregiving to be perfect. We are only human, no matter how hard we try to do our best, we are going to make mistakes. It happens. The point is to do our best, but also understand that sometimes mistakes happen. My mother always used to ask me when I was upset about something, “did anybody die?” as you can imagine my answer was always “no.” What I’m saying is hope for the best, prepare for the worst. Just like anything, caregiving has its good days, and its not so good days, and that’s okay.

Fifth, never lose hope. That’s right. Because hope is the bedrock of successful recovery for anybody involved with mental illness.