8. Getting Back – Safely and Sanely

When you decide not to give up, it makes all the difference in the world.

Maybe you never believed what people told you. Maybe it never sat right with you, and you could never bring yourself to believe that you needed to limit yourself, settle for less, make do, and get used to your “new normal”.

Maybe you come to that decision by trying to give up, and failing… by failing to allow yourself to fail. Maybe you tried to give in to the pressures, but realized it wasn’t for you.

I’m a classic case of someone who has used unsafe means to augment my Sense-Of-Self. And I believe that many – if not most – of my TBIs over the years, stemmed from an underlying unsettled Sense-Of-Self.

I pushed myself to do more than I should have, so I’d have that stress response (for example, driving long distances when dog-tired, pushing myself to go-go-go, no matter what).

I took risks specifically to go “all in” and block out everything else and numb the pain (for example, pushing myself in sports and edgy interactions with police and authority figures).

The last TBI I had totally shredded my Sense-Of-Self, to the point where I didn’t recognize myself. I didn’t know who was walking around in my skin, and I couldn’t fathom ever getting back to my “old Self”.

• I couldn’t get my breakfast together without melting down.
• I couldn’t read.
• I couldn’t go outside for long walks down the roads around my home.
• I couldn’t deal with being interrupted, without losing my cool.
• I couldn’t learn new things – which had always been a cornerstone of my identity.
• Calm and level-headedness were out the window – I overreacted to everything.
• Nothing was funny. Not even close.
• My home fell into disrepair, and I didn’t know where to start to fix anything.
• All sense of satisfaction in things I did was gone. Nothing had any much appeal for me, I just did it by rote, because that was what was expected of me.
• My life felt unfamiliar to me – as though I was living someone else’s life – or someone else had stepped into my skin and was going through the motions.

All these things told me that the person I knew as myself was nowhere to be found. I figured they were gone for good, my identity was erased, and the best I could hope for, was muddling through… and with any luck, not posing a direct danger to anyone else.

But within the past few years, I’ve had a few glimmers of the “old me”, and lately I’ve been feeling more like my old Self, than I have in a long, long time. I’m not even sure if I trust it, because it feels quite new to me, and I had resigned myself to the old me being gone for good.

It feels like I know myself again. Like I recognize the person walking around and talking as “me”. And I am starting to feel like I can trust what comes out of my mouth, and what pops up in my head. I can trust it, even predict it.

• I’m reading again.
• I’m learning again
• I’m handling myself with calm and level-headedness again
• I’m laughing again.
• I’m able to take care of my home again.
• I’m finding the same sense of satisfaction in things I used to do
• My life is starting to feel familiar to me again.

The person who used to show up, when I was engaged, is starting to show up again, and that’s pretty amazing.

So, how did I do this?

First and foremost, I reduced the systemic stress. I stopped using stress as a way to sharpen my attention. I quit using drama to wake myself up. I stopped making choices that drained me. I stopped driving long distances when I was tired. I would either take a long nap before going on the road, or I would leave the next morning. I worked steadily at my reading, starting small, and working my way up to longer pieces, allowing myself plenty of rest in between, just to catch up with myself. I took care of my body by eating right and exercising regularly. I made significant life change and made a priority of  getting plenty of sleep. I also started to steer clear of people and situations that are just plain bad for me (if I can see tell).

I also replaced the excitement I got from outside circumstances, with my own definitions of what was exciting and challenging. I started challenging myself from within and became far less dependent on outside influences for my stimulation.

Amazingly, this was a whole lot easier to do when I was rested and had energy from exercising — and not eating a lot of junk food.

Most of all, though, I believe I’ve benefited from rebuilding my familiarity with myself. I became a creature of routine, so that I could master certain aspects of my life that were challenges – even very simple ones that I wanted to not have to think about too much. Things like my morning routine… I made a list of things I needed to do each morning, and I did them in exactly the same order, till they were habitual and rote. And my experiences with them, my reactions to what happened, the ways I was affected by something as simple as the sight of my cup of coffee sitting on the counter beside my soft-boiled egg, all became routinely familiar to me.

It took years and years for this to happen. And I am so very happy to say that today, I actually have restored my Sense-of-Self to a level of familiarity that I didn’t have for about a decade. Those were such dark and dreary years, such awfully confusing times. And I walked around like a stranger in my own skin, day in and day out, wondering if I would ever get back to feeling like myself again.

The answer I have for myself now, is “Yes”. Yes, I can — and did — get back to having a stable Sense-0f-Self. Even though my current Self feels like a different version of me, it still feels like ME. And that’s huge. Just huge. It’s more than I dared hope to dream of, back in 2008 when I started this blog. But it happened. And I really want to reassure others that yes, it is possible. And no, we don’t have to resign ourselves to being strangers to ourselves for now and all time, after a TBI.

Granted, everybody’s got a different trajectory. Some get where they want to go quicker than others. And some seem to never get there. But I can tell you this — if you do the same danged things the same danged way, day in and day out, week after week, month after month, year after year, you are going to start noticing familiar patterns, familiar reactions to what happens inside you. And you can start to feel familiar to yourself again. It’s not easy. It takes time. And it takes constant work. But if you’ve got issues with perseveration, stubbornness, hard-headedness, and you’re willing to be honest and humble about the process, admit when you’re wrong, and keep learning, then you do NOT have to resign yourself to a diminished life of resignation and a “new normal” that never actually feels normal to you.

It’s about the Self. The Sense of the Self that lives and breathes within each and every one of us. It’s about befriending ourselves and getting to know ourselves again. That’s the piece that I think a lot of rehab folks don’t realize or address. They seldom have the extended time to spend with TBI survivors, anyway, to see that Sense-of-Self get restored. But after you’ve been turned loose on your own, there are ways you can get back to yourself. I found a way that works for me. And I believe it will work for others, as well.

Some might say the question of Self is the domain of philosophers and chaplains, out of reach of the average everyday person. I disagree. I believe it’s far more than some academic, theoretic, or esoteric path to wander down, when you don’t have anything more important to think about. The Self, one’s Sense-Of-Self is a core and central part of TBI recovery, and if it’s not properly tended to and rebuilt, that can have dire consequences for a survivor’s long-term prospects.

Self and our sense of who we experience that to be, permeates every aspect of our lives. It’s inescapable, it’s ever-present, and even it its “broken” form (as it often appears when your identity is fractured after a traumatic brain injury) it plays a huge role in how we go about our lives and how we seek out meaningful and lasting change — for better or for worse.

Self matters, because it’s who we are. It’s how we define ourselves. It determines where we put our attention and our energy, and it gives us a sense of purpose and place in life. When you lose that, you lose a truckload of reason to go on — the very thing that can keep you going through the long, arduous work of recovery from TBI.