My Autistic Experience – The Quest for Happiness

During a summer back when I was an engineering student at UofT, I learned a lot of interesting things about emotions and on how to control them. Many of these things are counter-intuitive, but in learning these things and in practicing the techniques I learned, I became better at controlling my emotions. I don’t remember what got me interested in this quest, but I must say that I am glad I did it. My emotions have always been difficult to work with, and the insight I have gained regarding emotions has made life much easier for me.

Perhaps if I had not found this resource and learn the lessons I have learned about emotions, I would perhaps be on a quest for happiness. It seems to me that everyone is seeking happiness, rejecting other emotions in their quest, seeking to control their emotions so that they can achieve happiness. It reminds me of the John Lennon quote:

“When I was 5 years old, my mother always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down ‘happy‘. They told me I didn’t understand the assignment, and I told them they didn’t understand life.”

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VULNERABILITY

 

 

As I enter 2018 I am struck by a simple idea that I would like to guide me through this year. Actually, I’d like it to guide me through my life, but let’s just begin with this year. The concept of vulnerability is one that I first discovered when watching a Ted Talk’s video online. This is place I go to for inspiration and insight, particularly when times are tough. I encourage others to do so, because, every once in a while, something touches me to my very core.
Brene Brown is a qualitative researcher and she speaks to the topic of vulnerability in a way that exemplifies everything that I hold as a core value. It is the reason I write these blogs, it is the reason I advocate for mental health awareness, it is the reason that I share my stories. I believe these things are good for my soul and ultimately the true heart of ending stigma and creating community.
The truth is however, that being vulnerable is never easy. When do I share my stories and bare my soul to the world. Who can I trust to show compassion and how do I know that someone may not laugh or think I am “craving attention”, when I all want is to feel as though I am not alone. Having mental illness is often overwhelming and having to feel as though it is a secret and something of which to be ashamed, makes the struggle absolutely daunting.
We all have something in common. Those of us who suffer, who manage, who know someone who suffers, who have watched someone suffer and simply stood by, not knowing how or why to help. Those of us who are scared of mental illness, don’t understand, have had terrible moments of grief and despair as a result of mental illness and those of us who have had momentous moments of triumph as a result of mental illness. We all have a story. And if we are brave enough we can share that story and be willing to be judged and be willing to feel naked amongst a group of people who may not understand or feel any compassion or empathy.
However, I also believe with great sincerity that if we speak out, if we share our stories (the good and the bad), that we take mental illness from a topic of illness and turn it into a topic of people. It is no longer a distant and scary topic, but a story of your Aunt Janice, or you sister, your uncle, your father, your classmate, your professor, your grocery store clerk, your neighbor, your mailman. In taking a chance to be vulnerable we gain understanding and insight and hopefully we gain a sense of belonging. The community of mental health advocates is greater than we realize, and being brave enough to bare your soul, may make you fortunate enough to find a place of belonging and understanding.

One of a kind

Recently I spent an entire day with a beautiful individual giving our time and raising money to a great charity organization. No one knew that as he was giving so much to others, he was the one that needed the help. Trevor O’Keefe was a decorated RCMP officer, he lived his life constantly giving to other people in need and pushing his personal needs aside. Corporal O’Keefe is one of countless first responders that are suffering from PTSD quietly. First responders are constantly witnessing horrific things and then expected to “suck it up” and continue with their everyday lives. Now that we are more comfortable with speaking out about mental health issues we need to bring the awareness to absolutely everyone regardless of occupation, race, gender, etc. “When ‘I’ is replaced by ‘we’ illness becomes wellness.” First responders are constantly keeping us safe and making us their first priority but when it comes to their mental health no one is putting them first.

‘One of a kind’: RCMP officer’s death highlights gaps in mental health support for first responders

RESILIENCE

“The Capacity to recover quickly from difficulties; toughness”

                                                                                                (quote from oxford dictionary)

This word come to me often and I garuntee we all feel the struggles that balancing school and work and life can so often put upon us.  But as I approach each roadblock and each new challenge, I try and look to them as opportunities.  This is an unusual point of view, but I also think it is incredibly helpful for a person that suffers from mental health concerns.  One of the greatest factors that seperates myself from other people who don’t suffer with mental health concerns is my ability to cope.

Finding coping strategies is one of the central focuses of my psychological and personal care.  When life gets difficult, and it certainly will, we can choose to let it bulldoze over it or I can choose to get knocked down, stand back up, dust myself off and try again.  Each struggle, gives me a chance to prove to myself that I am stronger than I think, that I can manage tasks and torments that seeem unmanageable.  With these experiences in hand, I continue to grow and so I anxiously await my next big challenge, I get excited when everything in my life goes wrong.  I also cry and have moments of sheer terror, but resilience doesn’t mean that we don’t feel the fear, it means that we accept it and are able to move past it with an understanding that, I can’t change what has happened, I can’t change what may happen in the future, but I will be able to survive it. I am strong and capable and I will find a way. No matter what!!!!  I am resilient.

 

It’s Okay Not To Be Okay

I’m the happy person.  Bubbly, smiley, outgoing.

I’m the person who is there.  A shoulder to cry on, trustworthy, intuitive.

I’m the encouraging person.  Optimistic, friendly, positive.

 

But what about when I’m not?

What if I’m stressed?

What if I’m sad?

What if I’m uhappy?

 

No one expects the happy person to have any problems.

Or to need someone to talk to.

Or to experience a mental illness.

But the truth is, these things can happen to anyone.  You really can’t always judge anyone on how they feel, by how they portray themselves.  That exterior is not always a good indication of what is going on in a person’s head.  I encourage you to be as nice as possible to everyone you meet.  To always, offer a friendly smile, and to lend a helping hand.  To ask people how they are doing, just to show that you care.  Always be kind to people, you never know what they are going through.

If this happy exterior type person reminds you of yourself, please know that it is not your duty to always hold this up.  Know that there are always people who care.  People who want to help and people who want to listen.  Do not feel as though you have to keep up that wall, no matter how happy and pleasant that wall may seem.  Everyone needs someone to talk to sometimes.  Always remember that you can be the person who needs a shoulder to cry on.  You can be the person who needs someone to talk to.  No matter how happy you make yourself seem, know that it’s okay not to be okay.  Just a reminder.

In the wise words of Ellen DeGeneres, be kind to one another!

The Punishment of Perfection

I have anxiety and I know that my future success will be built upon the achievements of today.  I go through my head and imagine a day, four years from now, when I accept my degree and am acknowledged for my hard work and dedication.  What scares me most; however, is having that degree mean nothing.  In a world as it exists today, people leave with degrees that are meaningless and instead spend their adult years, moving from one precarious position to another.  I want to write a post that is inspirational and helpful, but mostly I want to write a post that is honest.  I struggle day in and day out to achieve my best, impress my professors, earn the respect of my faculty, involve myself in student activities, maintain romantic and personal connections, work to support myself and my academic endeavours and maintain my own mental health.

I feel as though the weight of my entire future happiness is resting on the achievements of today and I hope I am not alone, when I say that it is overwhelming.  I manage everything entirely well, I remain calm and persevere under the pressure and achieve more than I ever thought possible.  I manage until I no longer can.  I sit alone, crying in the bathtub, hyperventilating and feeling the panic surge through my body.  I feel a weight on my chest and rationally, I know that I am not having a heart attack, but it feels so real.  The worst is when I begin to feel dizzy and like a fuzzy feeling comes over my head, as though I am walking through a dream, as though I am stepping outside my body and I can’t manage to climb back inside.

I know that I need to accept less than perfection, I know that I am running a marathon and not a sprint and I know that something must give, or else my mental health will be the ultimate sacrifice.  I will work hard this semester to accept that perfection isn’t always obtainable.  I am trying to coach myself to respect myself and this is the true way to earn the respect of my peers and professors.  I will try to be compassionate with myself.  In that moment however, I had to settle for finding the strength to climb back into my skin, settle my breathing, calm my heart and dry my tears.  For today, that will have to be enough, for today, I will have to be enough.

Can Stress be a Good Thing?

So, a few things happened to me just before school started, I got a job with campus walk and a teaching assistant job. I got an email with a contract and information and then started balling my eyes out. Why is it that when good things happen to me I feel like I don’t deserve it. I felt overwhelmed at the thought of having three jobs, being a full-time student, peer leader, UOIT ambassador, WUSC ambassador,  mental health advisory committee member and being a vice president of my sorority. I put a lot of pressure on myself to do everything I possibly can on campus, to get amazing grades, to make money and to try to have a life. This situation is one of those times when a good cry, having a little chat with a friend and cuddling up to my dog make me feel better. I ended up not being able to do both jobs on campus which took some stress off.

I finished the semester on Dean’s list and didn’t drop the ball on any of my responsibilities. I also loved being a TA, I wasn’t perfect. I know I messed up a bit and got nervous and shuddered all the time but, I laughed it off and moved on. I’m glad I took everything on, it made me a better student and person.

The Truth About Grief

“I’m sorry for your loss.”

At this point, I’ve learned to tune it out. It seems like when you have lost a loved one, this is the only thing that you hear. But, then again, what else would you expect others to say?

The loss of a loved one can take a toll on your mental well-being, and the weight of it feels like an elephant sitting on your chest. We are getting close to the one year anniversary of the day I lost one of my best friends. My Papa was the person I went to when I needed a listening ear. It was unexpected, and quite possibly the hardest day of my life so far.

Many said, “you’ll get through it” or “stay strong”. However, the most common by far was “I’m sorry for your loss”. This phrase became a trigger for me, but everybody said that I was just going through the stages of grief – denial, anger, bargaining, depression, and acceptance.

At first, I agreed with them. I denied the reality of the situation, I isolated my thoughts and feelings from my friends and family. I was mad at Papa for leaving without saying goodbye. When I left the house, he would say “I’ll be here”. Now, he isn’t.

Every day, I told myself that if I hadn’t gone off to the library that morning, I could have gotten help sooner. I blamed myself even though nothing could have been changed. I was depressed thinking about all of the things that he would no longer be there for. The first time that I came home from school and he wasn’t there was heartbreaking.

It is said that the final stage of grieving is acceptance. A year later, I have yet to agree. I believe the process is never-ending – there are good days and there are harder days. Sometimes you’re reminded of the loved one and smile at the memory, sometimes you’re reminded and cry for the loss.

What everybody forgot to tell me was that it gets easier. You will never forget. Eventually, it will become easier to remember. There is always someone nearby who will be willing to listen to your memories, no matter if it’s with a smile or a cry. It could be a family member, a friend, a neighbor, or maybe even a stranger with an open heart.

I learned a lesson from this experience. The next time I meet someone who has lost a loved one, I won’t tell them that I am “sorry for their loss”. I will greet them with open arms, a shoulder to cry on, and remind them – it will get easier.

Buckle Up and Enjoy the Ride

In my dream world, everyday is a good day and I am constantly running through a beautiful valley of happiness. However, in reality, everyone has good days and bad days. Some days you’re running through that happy valley, while others you are at the bottom of a dark hole just hoping to grasp a rock to pull yourself out. Welcome to the roller coaster that is my life, so buckle your seat belts and enjoy the ride.

I know I am not alone on my perspectives and the real world is like Wonderland- filled with roller coasters everywhere you turn. Sometimes we can be so busy screaming on our ride that we don’t notice the man screaming on drop zone.

This week I finally saw the man falling and realized I am not alone on the ride. No one is. When going down on the roller coaster we have blinders that prevent us from seeing the various posts and beams holding our ride up. Have you gotten lost in my analogy?

You are not alone. There is support trying to hold you up even when you think you’re falling off the tracks. Sometimes we don’t notice the support that is available to us. On your next bad day try to think about who is at the bottom of your ride holding you up. Is it your family? Friends? Maybe it’s the Student Mental Health Services. Or maybe it’s the people on this blog who want to hear what you have to say and want to help. Whomever it may be, they are there for you.

The next time you are at the bottom of that hole, keep in mind someone out there wants to throw you the rope and help you out.

Zones

I spent some time away at Nova’s Ark this past March Break and again for two weeks this summer. To say that I learned a lot would a be huge understatement, because the culmination of my experiences there have profoundly impacted me.

How does a mental health oasis sound to you? Hopefully, good, as that’s what it was like being at Nova’s Ark for me. I was able to retreat from the stress of my daily life and get away to a place that encouraged me to think about and reflect upon my emotions. It was also a place that I felt comfortable to be myself and to focus on the things that I wanted to focus on.

The Zones of Regulation

I learned about The Zones of Regulation, “a concept to help [people] learn how to self-regulate. The Zones of Regulation creates a system to categorize how the body feels and emotions into four coloured zones with which people can easily identify”.

ZonesOfRegulation1

Skilled and carefully trained teachers and mentors helped me to articulate how I was feeling, to recognize my triggers, and to help develop my ‘toolbox’ for coping strategies. It sounds easy when I say it like that, but the reality is that figuring this stuff out is quite complex. As someone on the autism spectrum, I already struggle at putting words to how I’m feeling and what to do in stressful situations, so I felt like I had a lot to learn about how the zones applied to my life.

Toolbox

One of the first things I applied to my daily life was using my ‘toolbox’ of coping strategies. This was the easiest list to develop because I had already been implementing many of them in my life over a number of years  (if I hadn’t, I wouldn’t be where I am today) and so it was just a matter of being more intentional and proactive with my ‘toolbox’.

Zones = Rainbow

The next thing I learned is that The Zones of Regulation are not ONLY four colours, regardless of how much easier that would be, and I recognized that it’s much more complex.

This picture I drew gave me insight into how I interpret the zones. Think of this as a cross-section of my brain and the various sections represent the different parts of the brain, such as thinking, motor functions, sensory input etc.  First off, there’s four basic colours: blue, green, yellow, and red. However, there are blends, shades, and brightness of these colours that would make it appear more like a rainbow.Zones of Regulation

Blends

Between yellow zone and red zone, there’s an orange zone and sometimes this better describes where I am at better than yellow or red could.  Between green zone and yellow zone, there’s lighter green colour with some yellow mixed in etc. You can see in the picture that red and yellow have combined to form orange or blue and red have blended to make purples and pinks.

Shades

Even with one colour, such as red, there’s a variance in shades (from light to dark) and being able to differentiate between the shades within a zone is super helpful. The shades apply all the basic colours, plus the ones in-between (like orange, purple, and pink).

Brightness

Each colour is also expressed in its degree of brightness and how much space it takes up in my ‘brain’. In addition to light and dark sections in my brain, there are also narrow and thick sections too. I would argue that thick, dark red sections are far worse than  narrow, light red sections because of the intensity and the length that those bands represent. The darker sections are more problematic from an emotional perspective because it can be harder and take longer to recover from going into a thick, dark red zone. The coping strategies and tools in my box need to reflect the wide variety of zones within my brain and body.

The Green Zone

If you look again at the picture, you’ll see a diagonal band of green ‘brain’ that goes across the whole frame and all the other colours are intersecting with it. The green zone is my default state (and I would assume that for most people), but continuously throughout the day my brain is being challenged (or attacked) by various sensory, emotional, social, and physical inputs and I have to use the coping strategies in my ‘toolbox’ to regulate my responses. I cannot stop the external influx of stimuli to my brain, but I can internally help myself by using coping strategies.  For example, sometimes my eyes are sensitive to the lights and my brain starts to go into the yellow zone because it’s an uncomfortable stimuli, but then I wear sunglasses to cope and my brain is no longer stressed and goes back into the green zone.

Parts of the Brain

I think that different parts of the brain and body can be in different zones at any given time. For example, my body might go into the blue zone if I’ve just finished playing sports, so it’ll be tired, but my mind might still be in the green zone because that’s a part of my brain that wasn’t stressed. I’m sure you can think of other examples of when a certain part of your body or brain are in different zones; this obviously adds a layer of complexity to figuring out triggers and coping strategies. There’s no predetermined time-limit of how long a particular part of your brain will remain in a certain zone or even how long it will take me to recover back to the green zone. Recognizing the transition from zone-to-zone is still something I am working on and it was helpful to be around skilled observers that would communicate clues to me throughout the day.

How Zones Help Me

Learning about The Zones of Regulation has helped me to better identify and articulate my feelings. This process has also help me refine my coping strategies to be more effective and therefore my quality of life has increased. Being in a supportive learning environment incubated my learning and allowed me to practice without failing, and this in turn has given me more confidence to face my daily challenges. I think that most people want to live well and if given the opportunity to learn and grow, they seize that moment with the hopes of becoming a better version of themselves. Another coping strategy that helps me is being around animals and Nova’s Ark provided that opportunity for me. Over the course of the few weeks that I was there, I got to know Ewok (a kinkajou) and we are kind of ‘friends’ and he loves to snuggle. My time at Nova’s Ark has left a positive impact on my mental health and I experienced relief knowing that the problems that I encounter with my emotions are, at worst, temporary and at best, solvable. Having the space and time to process my learning from Nova’s Ark has been and will continue to be a tremendous asset in my daily life; I cannot wait to go back!

Ewok