All that I have gained

What was … and what will be…

Happy New Year everyone! I am feeling quite positive about this coming year. 2013 was a bear — for me, as well as many others I know. I’m none too sad to see it go, and after that “inoculation” experience with all the crappiest of crappy crap that came down the pike, I feel like I’ve developed sufficient scar tissue to move on.

Yesterday I had to work again — I used up one of my year-end vacation days to run errands, a few weeks back. So, it was a mini practice ramp-up for the new year. It was pretty good. I got to just settle in and take care of some things, close down a handful of pending items, and get a jump on the next year’s activities.

Most of my work time yesterday was spent in planning — thinking through what needs to be done, and how it needs to get done — so that when I actually can do it, I don’t have to think too much about it, and I can just go. I hate getting stuck in that analysis paralysis situation — taking time off busy work to really strategize and plan my approach helps me avoid that pitfall.

I spent a fair amount of time, over the past few days, thinking about my past years of TBI recovery. I have been through a number of distinct cycles after my TBI at the end of 2004 (holy smokes has it been almost 10 years?!):

1. Dissolution and Oblivion — things unraveled and I had no clue that anything was actually wrong in my life. Blow-ups, melt-downs, increasing forgetfulness and volatility, worsening physical fitness and balance, poor financial decisions, difficulties sleeping and eating properly…  things just dissolved around me, and I did not perceive that it was so. As far as I was concerned, it was all because of things other people did, and my reactions to what they did were justifiable, because, well, there was nothing at all wrong with me.
2. Dawning Realization — when I realized that my money had disappeared and I didn’t understand why, it sank in that something was “up” with me. Oddly, none of the other signs registered with me. My realization was more about money in the immediate present, and also about all the difficulties I’d had as a regularly concussed kid, growing up with multiple TBIs. All of a sudden, certain things seemed quite off, and I knew I needed help.
3. The Quest for Answers — I embarked on a full-throttle quest for answers to what was going on with me. I didn’t even know exactly what was “up” — just that certain things were not right, and I had to figure it out, or I was going to lose everything. I kept voluminous notes about my life experience, I sought out every conceivable avenue for learning about and understanding what was happening to me. I scoured the internet. I read medical study after medical study. I looked for websites. I plumbed the depths of my local library system. I collected binders full of notes about concussion and TBI and my own personal experience, and I made daily lists of all my symptoms, what I was doing about them, and whether or not things worked for me. I watched for patterns in my experience, and I spared no detail in describing my life, from the inside-out. I went down a lot of dead-ends, and I incidentally decided that I suffered from a variety of disorders, based on passing input from numerous people, which made me look like a raving lunatic to the professionals to whom I turned for help. I endured a number of truly humiliating encounters with suspicious experts, who could have really done me harm, had I given them the opportunity. This was both the most intense and the most frustrating and anxiety-producing part of the process — but it kept me going, because I had a mission and a purpose. And I was not going to take “no” for an answer, till I found the help I needed.
4. Building a Foundation — when I finally found a neuropsych who could help me, I had a neuropsychological assessment, which was a several-day affair that tested my memory, processing speed, and a number of other aspects of my functioning and behavior. That showed both of us what was really going on with me, and it pointed towards the things that could be addressed. It also showed what was NOT wrong with me, and it steered me away from this wholesale decision that I was 100% broken and had more problems than I knew what to do with. It was about finding out both what was wrong and what wasn’t, and figuring out what direction to go from there.
5. The path to normalcy — I’ve never actually been “normal” (that would be boring!), so this part of the process was about just getting some stability back into my life. I had jumped ship on a number of jobs, since my TBI in 2004, and my years of stable employment for 10 years prior to that was in serious jeopardy, by the time I started working with my neuropsych. I had taken a string of short-term assignments, and I had ditched a permanent job after just three months of discomfort, and none of that helped my case, when I went job-searching. Over the course of the first few years working with them, I went through several more job changes, but I developed a good routine for my days, and I made some significant improvements to my life that got me out of constant fight-flight mode. Getting normalized meant getting off the roller-coaster of reacting to every single emotion that came up, and learning to make choices based on my own wishes and plans, rather than as a reaction to everything that (I thought) was going on around me.
6. Real progress — this started to happen, as my life became normalized. The wild ideas about all the different syndromes I had, subsided, and I was able to see beyond the immediate reactions to events taking place in front of me. I was able to better think in terms of what I wanted my life to be like, rather than how I didn’t want it to be, and I was able to take real, substantial steps to making my plans a reality. I was able to land — and keep — two good jobs that looked good on my resume, and I was able to leave the first one for the second because of a legitimate, publicly defensible reason, rather than just panic that I had to excuse away to recruiters and friends and family. It has not been easy… there have been a number of plateaus, when I felt like I wasn’t making any progress at all… and it’s been quite a challenge to keep steady in the midst of all the storms. But I feel now like I have come through to the other side in a big way, and I’m able to hold my own, no matter what the outer circumstances around me. This is huge. After a lifetime of being pushed and pulled by every little wind, after being beaten down by one defeat after another, and deciding that there was no hope for me, I can now hold my head up and stand tall, knowing that I do in fact have the inner resources to withstand the storms of life — without becoming a danger to myself and those around me.

So, that’s where I am today. Standing tall on this first day of 2014, grateful for all the help I have received over the past years. There have been a lot of low points, and sometimes I felt like I was never going to get out of that dark abyss, but I have persevered, and I have come through. The hard times, the boring times (probably even harder than the hard times), the exciting times, the mellow times, the exhausting times… it’s all been a part of the whole picture.

Yes, I’ve been sleep-deprived and anxious. Yes, I’ve been in a lot of pain. Yes, I’ve been angry and raging. Yes, I’ve had run-ins with the police and other authority figures. Yes, I’ve gotten in trouble, and I’ve covered for myself — which has made it harder to get me the help I need. Yes, I’ve been really confused and unable to clearly formulate real questions to truly understand my situation. Yes, I’ve been down one dead-end after another, and I’ve had some really bad experiences along the way.

But I’m still here. And for all the bad times, there have been good ones, as well. I can now leave my house and walk for hours in the forest without losing it and running home in a quivering mess of tearful anxiety. I can hold extended conversations with people and understand what people are saying to me — and ask for clarification when I need it. I can spend a relaxing week with my spouse without both of us losing it. I can hold down a job and stay steady enough to let people see my true worth over time. And whatever comes my way, I can break it down into manageable pieces to handle one at a time.

Now that I look back over the years, I can see how beneficial it has all been, even if it has not been the easiest or most pleasant at times. The hardest lessons were the ones most worth learning. And they are the ones that will stick with me the most.

And looking forward to the new year — and all the years beyond — I feel a great deal of hope. There are many, many individuals suffering on a daily basis from concussion and traumatic brain injury, as well as acquired brain injuries like stroke and viruses. Along with it, comes PTSD, all too often. There is so much suffering, and it too often takes lives. And yet, I do believe there is hope. For all of us. I know there is for me, and I hope I can pass along some of that to others. Maybe someone in pain will find their way to this blog and find their own hope. Maybe someone in need of answers — or just hearing what another person is experiencing — will find their way here and get a little of what they need. Maybe someone who knows someone who is struggling, will pass along this blog to them, so they can find a kindred spirit.

That’s about the best that I can ask for — that my life stays real, and that I can keep on sharing my own experiences…. and hope that good will come out of it all.

And now, for 2014… Onward!