I’ve been thinking a lot, lately, about how I’m managing to get my life back. It’s taken me a few years, and it hasn’t been easy, but I do feel like I’m finally getting to a place where I can really live my life just as me, instead of focusing mainly on overcoming all my hardships.
Now, mind you, the hardships have not completely disappeared. For the past week, I have been almost dangerously dizzy, and I have not felt well. I have not been sleeping as much as I need to, and my head has been filled with a fuzzy fog. It still is, in fact. I’m also a bit dizzy, still. And I don’t feel well. If I didn’t have to go to work today, I wouldn’t.
But even in the midst of not feeling well, being incredibly off-balance, and not knowing what I could do about it — apart from eat less junk food, get more sleep, and take my time doing things I can normally do quickly — I’ve still managed to do some important things. I’ve been talking to recruiters, looking for new jobs, and visiting an old friend who lives several states away.
There hasn’t been a lot of difference, lately, between how I feel now and how I felt three years ago. I had tons of balance issues, then — they appeared to be diet-related, and when I changed what I ate, the vertigo pretty much went away. The big difference now is that I am aware of the issues, and I’ve developed coping mechanisms to deal with them. I’ve got a lot of tools I can use to get through my day, even if I’m incredibly dizzy, off-balance, nauseated, and bone-tired. I may not be able to prevent these experiences from happening, but I do know how to manage them.
And I do manage them.
I guess this is the difference I see between my own TBI recovery and what I’ve heard others talk about, especially in terms of having to accept limitations and change your expectations of what life has to offer. I do believe that some of what I’ve got going on — the sensitivities, the fatigue, the constant restlessness, and more — may be with me for the rest of my life. But I also believe that I can manage them, rather than letting them take over my life. When I focus on my goals and intentions of what I want to achieve in life, and I make them the primary focus of my life, all the extra things that get in the way have a lot less power over me. Realizing that my problems don’t have to stop me — that I can come up with new and different ways of handling these things — has been a huge part of my healing.
I do say “healing” because that’s what has happened, which has made my recovery possible. Finding a way to, first, understand what was/is going on with me, and second, to constructively approach those things, has been like a balm to my spirit, and it’s made so much more possible in my life.
I really have my neuropsych to thank for a lot of this. And also people who work with PTSD and cognition and recovery and rehabilitation. I have a lot of people to thank, as well as all the readers of this blog, who have kept me going through the past months and years. So, thank you. 🙂
Anyway, speaking of getting my life back, I have a meeting in 10 minutes, so I need to wrap up here. I guess the point I’m trying to make is that I am getting my life back, and it’s been a gradual process, focused on handling one thing at a time, one challenge at a time. Just learning to know what my different issues are — working my way through the 84 different things that can come up, and addressing each one, one at a time… or two or three or four at a time. But you get the point — it’s been incremental, really. My progress has been “all over the map” at times, but then, organic stuff usually is a bit messy and imprecise. There’s part of me that wishes it were clean and clinical and controlled, but that’s not likely to happen.
So, I’ll take what I can get, and get on with the day.
And keep on getting my life back.
Broken Brain - Brilliant Mind 
Just reading your post I thought that you were writing about me!!!
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I hear that, every now and then. So many of us feel so alone, working through all our daily challenges, and at time it seems like the whole world has something better to do than acknowledge us. So many really do struggle, whether it is with TBI, or PTSD, or some other physical, mental, emotional, or spiritual hardship. But if we can reach out now and then, it helps us and others to know we are all alone in some ways, yet in others we are in a large company. I hope this helps – in whatever way.
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What you are talking about here is basic human psychology – BI or not. We ALL have limitations, we ALL have weaknesses, failings etc. We can define ourselves by them or we can identify our strengths, develop compensations and continue to try and improve ourselves. So you are correct that the way we approach things can make a big difference.
However the issues that make BI challenging are that
a. A person often (usually) lacks self awareness – they may not recognize when they are about to step off the proverbial cliff; they may be impulsive but not see that, or lack of awareness of others and execute social miscues. Sometimes they may miss information and not realize it – and then fill in the blanks inaccurately and get puzzled by the negative results.
b. BI also often results in rigid and black and white thinking. The circuitous thinking – getting lost in the weed, easily overwhelmed and unable to act often lead a person over and over the same path with no progress.
c. Emotional response is heightened and often exaggerated. The amygdala is over stimulated and so the individual will experience emotional ghosts that are quite real to them.
d. BI DOES impair cognition. There are decrements in functionality – whether it be speed of processing, memory, sensory integration, comprehension, speech etc. There are issues. Sometimes there are compensatory skills, sometimes a person can rebuild the functionality but sometimes skills and functions are simply gone and no amount of can do, positive thinking etc will return them.
You have done a remarkable job at rebuilding your life and learning what you need. But I caution dismissing anyone who does not make similar choices as being limited or quitting.
Even you would say that the process of learning is a slow one and very up and down; in the past month you have decided to stop seeing your neuropsych and quit your job – both of which were probably not good instant decisions (and which you have come to recognize). In the past you have dismissed meditation as not for you but now you recognize that it can be very valuable. You are fortunate in your job situation; I know (and have experienced) job situationswith minimal (or no) tolerance for mistakes; the market is tough, very very tough. I know others who struggled to go back to work at what they once did, two years later, stressed out, sick and failing horribly they finally had to accept that they could not do the same job. That recognition is not quitting – that is healthy recognition of what is.
The use of the word limitation is a loaded one – we are all limited. I cannot be an opera singer, I am limited in my singing ability (and in many other abilities). I have returned to work full time in my previous profession – and it has been an ENORMOUS struggle. I have barely held on (and lost a number of jobs before this). Although I am getting by (for now) I also know that it is at a huge price – I cannot do much else with my life – I work and then come home and eat/sleep. The effort and stress is often extreme. If I did not need to have an income I would not do this; it’s not about failure or limitations, its about recognizing that my life isn’t about proving that I can return to work – its about living. And, given that I have few issues than many I know that it is even harder for others.
I also don’t think it is a limitation when someone chooses to not participate in ‘the rat race’ stuff – there is no loss in devoting oneself to family, to pursing gardening or being an full time non paid advocate, Some folks go back to school, some move into the arts or take up other causes. I know few people with BI who just lie around and watch TV all day (though there are some – but that is true even without BI). Some rehab programs are more passive and I think that is a weakness – the better ones focus on self awareness and recognition of what a persons issues are. Many many people with BI tend to try and push through, use the skills they know – and they end up in a mess. Prevention is more dull than heroic saves but it’s the healthier and saner way to live.
A good program and the rights supports can enable a person to make wise choices, to be empowered.
Wise choices are not limited – they are exactly how you see them.
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m –
Well, I’m not sure I’m accusing anyone of giving up or quitting… just saying it’s important to not give up. We do it so quickly, at times, when so much more is possible for us. This is true as much for me, as anyone else.
It’s all a process of figuring things out. And clearly my own understanding is subject to revision 😉
I’m still trying to figure out a good balance for my life. It’s a work in progress, and there are many gaps and holes where there used to be consistent “flow”. It’s an inexact process, but as I’ve said, I need to keep going and not give up on the possibility of having the best life possible.
Onward…
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What is particularly admirable about you is that you are doing this process in this forum – which allows everyone to see both the day to day ups and downs and the overall progress over time. Your honesty of experience is key – revealing your thoughts and responses help others see their own.
My quirk – I am particular about language use (challenges instead of problems, mental illness instead of crazy) because I think it influences people – we rise to a challenge, we avoid a problem, we can treat an illness but crazy is just crazy – I have recently come to understand why disabled is such a painful word, I am alternately abled but not dis abled)
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Thanks m –
The one thing I do strive for here, is just plain honesty. I don’t do the other stuff very well.
Yes, “dis-abled” is problematic… and relative. Compared to Usain Bolt, for example, we’re all a bit “gimpy”. On the other hand, compared to others, we’re practically Dionyssian.
In fairness to all, I think there needs to be room for a vast array of diversity. No sense in pathologizing differences, imho, just learning from them and finding out how to work with/around them.
It’s always something…
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