26 - Integrity and Trust

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I likely spent more years in university than was necessary for my resulting career in healthcare - three science majors and a senior thesis later, I arrived! My post secondary path could have been more efficient, but I don’t regret it at all. My experiences along the way were after all effective for giving me the unique perspective I have today. Indeed, I still believe all learning opportunities are valuable, even if they cover something I already know. It’s my opinion that there’s always something new to learn, and if not, then there is a chance to learn an old fact in a new way, or make connections in knowledge I hadn’t yet considered.

In my eight years of post secondary education (yes, I know, I’m privileged), most of my courses were in the sciences. I took a few language courses as well (because French and Spanish are fun!). But the most unique outlier was the one mandatory business course during my second degree. This business course, however, wasn’t uniquely for the students in my health sciences faculty - first year business students, as well as other students from other faculties, filled the lecture room. Apparently this was a multi-faculty mandatory course.

Now, I don’t remember the name of this course, nor do I fully remember what it was really about. I think it was about how organizations are, well, organized? There was also some stuff on teamwork, leadership styles, personality types, yada yada yada… It’s clear that the primary goals and objectives of that course were not very memorable for me. I’m not even sure I took away anything useful for actually building a business.

So then, why am I going on about it?

This course was taught more than once during any given semester, and by many different professors. When talking with my other health sciences classmates, who had different professors for this very same course, it was clear to me that mine was even more of an outlier.

Whereas other students described their class as dry and monotonous regurgitation of textbook facts, my professor brought a lot of real life storytelling to their lectures. In my class, it seemed the lessons were always something like here’s why it’s important in business, but here’s how it relates to our lives in general.

These life lessons were of course biased to this professor’s own opinions and experiences, like anyone sharing personal stories (myself included!). I remember not agreeing with everything this professor said. But to this day I still think about this one lesson: DWYSYWD, this prof often, and somewhat incoherently, repeated. It’s an anagram and a palindrome that stands for do what you say you will do.

It’s such a simple concept, really. If you say you will do something - if you make plans, if you want to be someone others can count on - then simply follow through on your word and do what you say you will do. This is one lesson I did in fact agree with. I still hold it as a value to live up to. This to me is a key part of living with integrity.

Have you heard of Brene Brown? She’s kind of a celebrity social worker, storyteller and researcher whose talks and research on vulnerability I find fascinating. I can really relate to her work. Plus the themes she pulls from her research data have a way of opening my mind and helping me see day-to-day experiences in a new light.

Fairly recently I listened to some talks Brene Brown did on how we build trust and connection with others in our lives. From her data, she breaks down different behaviours and values that seem to build and betray our trust in any one of our relationships, whether it’s family, friend, romantic or workplace relationships. She states that integrity is one of the key components of trust.

Integrity may be defined a few different ways, however Brene Brown describes it like this:

Integrity is choosing what is right over what is fun, fast and easy; choosing courage over comfort; practicing, not just professing your values.

When I think of this description of integrity in the context of my past 4 years with PCS, I realize why there are people I’ve lost connection with. There were people who valued time spent with me, but when it came to actually visiting, they wouldn’t make the time, or they would be rushed out the door on a schedule. Others would make plans with me, offering to drive me places I couldn’t get to on my own with my injury. Then these people would cancel last minute because something better came up. Even more discouraging, some people just didn’t even respond to my calls or messages, to confirm plans we had made.

These examples surely aren’t unique to me, nor unique to my interactions after my injury - everyone has experienced this regardless of brain health. And likely everyone can agree that when people don’t do what they say they will do, it hurts.

But do you want to know what hurts me even more?

I have canceled, rushed and not responded too.

In the last 4 years of this brain injury, people may have lost my trust when they have dropped the ball on doing what they said they would do. But my experience with PCS, and the unpredictability of the this illness, has also forced me to cancel on others, forget to respond to messages, and to be selective with where I spend my energy.

There have been countless times during my recovery when I have made plans and had to cancel because I have been in too much pain, I was too tired, I was having a setback, or I highly overestimated what I would be able to do - I had done too much earlier in the day or week, leaving me with too little energy to follow through on my commitments. I have bailed on a lot of plans with friends, performances in improv, and missed out on work opportunities. I have chosen other priorities over people, potentially hurting others and losing their trust.

But do you want to know what is even worse?

I have also canceled on myself.

I am doing my best to live independently - to be self-sufficient. This is hard with a disability. I will try to make myself lists of chores to get done for the week. I plan projects and save dates for different professional development events. I have a number of self-care activities I need to do to just be functional. But repeatedly, for each one of these things, I have shit the bed. Whether because of the challenges of PCS, or because I chose a more comfortable or convenient option (something that was funner, faster or easier).

I have hurt myself. I have betrayed my own trust.

Brene Brown’s research, however, didn’t start with trust. It started with deconstructing shame.

“Shame is the Gremlin that says you’re not good enough,” she says in one of her talks.

We might mix up shame and guilt, however they are significantly different. Brene explains that guilt is when we feel and think “I did something bad.” Shame is when we feel and think “I am bad.”

Guilt helps us grow as a person. Shame hurts our health.

PCS has led me to recognize how hard it can be to do what I say I will do, and in turn, I had lost trust in myself. This feeling of not being reliable to others, nor to myself, is a huge source of shame for me. At times it has felt as though so long as I live with PCS, I am only able to profess my values of integrity, while not actually being able to practice them.

The emotional turmoil that results is a doomspiral of shame. My shame gremlins tell me things like “you will never be healthy enough to work ever again,” or “you will never be successful nor self-reliant.” And my gremlins provide me with evidence. They remind me of when I planned to celebrate my brother’s graduation with my family - I had a setback so bad that not only did I miss the ceremony, but I barely felt well enough to sit at the table during the quiet family dinner at home. This was a change in plans from going out to a nice restaurant, in order to accommodate me on a day when the focus should have been on another.

My gremlins will provide other case and points to prove to me that I’m not good enough for any relationship. They will remind me of when I started dating my current boyfriend, and how just one month in I was hit with a setback that made it difficult for me to leave my apartment. More than once our date plans had to change completely to revolve around my needs for a lower stimulation hang out. It seemed I needed to be taken care of instead of being able to be an equally caring partner. My gremlins submitted this as evidence to the pervasive thoughts that say “I am broken.”

These are just some of the experiences I’ve had. Everyone struggles with some form of shame in one way or another, at one time or another. Brain functionality aside, we’ve all experienced those feelings of “I’m not good enough.” How often we experience these feelings may depend on how many gremlins we have or how intrusive they are.

I imagine that when my concussion happened, the Gremlin firm in my head opened up new job positions and hired loads more employees. I can picture questions in the interview process being something like:

“Let’s say she’s feeling good about a sunny day. How could you twist that to remind her she’s incapable?”

Or…

“A large part of the shaming duties involve saying to her ‘you’re not blank enough…’ Fill in the ‘blank’ with as many hurtful words as possible. Additional points will be given to words and concepts she doesn’t even know she’s shitty at yet.”

Stretching my imagination even further, my self-care and therapy must then be like a regulatory body or enforcers of ethical practice that try to keep this Gremlin firm in line. But, the gremlins had bought their way in at the start - they have a lot of support and have infiltrated the Board of Directors of that regulatory body. So, like, progress is slow…

But it’s important to remember that progress does happen. Just like people say shitty things all the time that I don’t need to take personally, I also don’t have to believe what my gremlins are telling me in my mind. Thoughts aren’t facts, after all. My gremlins don’t define me.

So then, how am I to deal with the shame related to my brain's unpredictability, making it super challenging to make and follow through with plans reliably?

How do I DWISIWD and maintain my integrity with my PCS?

I think I have to first build trust with myself.

I need to respect my own boundaries if I want to lay boundaries with other people, and have them respect mine.

I have to limit myself to what I can reasonably do to have energy for others, if I want others to accommodate my needs and prioritize putting time aside for me.

I need to own my mistakes and then move on so that I can be non-judgemental towards others, and let go of their errors and judgements towards me.

I need to be comfortable asking for help. I need to believe that I’m truly doing the best I can with what I got, so that I can assume the same of others.

I may not be able to do what I used to be able to do, or even do everything I would like to do. But if I can accept my limitations, plan and live within these to the best of my ability, and give myself grace that even the best made plans can fail, then I will be choosing what’s right, living with courage, and practising integrity.

Building this trust with myself may not be fun, fast, nor easy.

It may not result in doing everything I would like to do.

It may not allow me to do all the things that others can do.

But it will

be doing

enough.

Best in brain health for all,

Krystal

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Thank you and cheers!