‘She is never on the same page’

I am a Cushing’s syndrome survivor. My battle scars are plenty but most are of the invisible kind. I lived with the condition for over 7 years. Long enough for the symptoms to creep in (unnoticed for the most part), but also as I’ve come to learn, long enough for the symptoms to continue residing in my body even after surgery to remedy.

I presented at the just concluded COP in Egypt. I’m proud of myself. But for an 8-minute presentation, I felt like too much prep went into it. I’d been prepping since July. Reading, writing, conceptualising, critiquing, publishing. Coming up with my deductions. And in October I almost had no time for work because this took so much of my energy and attention. I haven’t had time for my friends, and so many other things I care about. To the point, I questioned if it was worth the effort.

Sometimes, I feel like a fraud. Because of my forgetfulness. When I’m writing and researching, it’s difficult for anyone to spot the issue. When it’s written reporting. But for me to present my findings, my work, verbally, I’d have to be reading a report word for word. Off the top of my head is something my brain doesn’t do for me anymore. I’m aware of the gaps and therefore, maybe leaning a lot into ‘self-conscious’. But on the other hand, objectively, I’m able to watch my thought patterns and query neuro processes.

Lately, it seems to be affecting how I communicate. At this point, I’m more curious to learn what the neurological breakdown is, more than I am concerned or panicked. I’ve done brain exercises of all kinds, and taken a shot at learning languages (not long enough to acquire depth) and musical instruments (stopped at one). Not that I completely stopped trying to improve my brain, but the mental exhaustion made it unappealing.

I watch people, in everyday conversation, talk out of their brains with such ease. I wonder if they know what a gift that is. I mean, sometimes even just doing small talk sends me into a loop. So much so, I regret opening my mouth to speak in the first place. I feel like I remember being like these people, but for someone who doesn’t talk much anyway, it is difficult for me to trace back to ‘when’ I started slipping into my current predicament with speech production.

Not that I regret my situation. I love that I got a diagnosis (it’s a rare disease, so I consider myself lucky to have gotten the help I needed eventually) and that most of the burden left my body. It was much needed for the health of my mind and spirit. I understand the consequences of it and why things have to be this way; the brain fog, mental exhaustion, among other things (bald hair that never grew back, rounded shoulder that caused hip and back issues, etc). I’ve accepted my journey.

That doesn’t mean I won’t push myself. Given the situation, giving up would be so easy. In many ways, I’d be justified. But I look at it as a challenge. Much like facing my fears. I believe the more I try to work my brain, the more I inspire the growth of new neuro pathways, that help me sustain whatever function I still have. That help me hold conversations that are intelligent enough to hide my weakness.

I’m just worried that I might get tired of trying. Especially as slipping up has happened occasionally. Where I said something that wasn’t in keeping with the ‘me’ I present. The past couple of months, preparing for the 8-minute presentation, were tiring. And filled with anxiety.

I feel, people don’t understand how difficult it is for me to show up, and be that person. So now, I’ve decided to talk about it when I can (more widely, otherwise, people close to me are aware). So that if I ever slipped up, the people closest to me would know what was up.

I don’t think I’ll ever truly stop trying to work my brain, even if it feels like it might not be worth it. I just wish there was no ‘fear’ so that I was sure I was doing it for the purpose of living. Of learning. As opposed to out of fear, of how fast I could lose the processing, memory, speech production, perception, or whatever functions are tripping up if I stopped. Not ready to feel that helpless.

As for the presentation itself, I really do think it was worth it. Even if the last of its kind (is at least how it feels right now, but I have the mind not to attach permanence to this- literally).

Find the presentation here