Reality Check.

15 Feb

Although yesterday’s blog post received no official “comments” (the Lance Armstrong-Pope-Holocaust-Bacon contest remains open!), I received several interesting personal email and/or telephone comments. Including this one:

Do you really still suffer from TBI?”

Um, yeah, Sue (pseudonym), I do.

You seem fine to me.”

Um, yeah, OK. Well … I’m not.

There’s a LOT that is totally NOT ok about me these days. Let me just run down a quick Top-10 for you…

10. I need a LOT more rest than I used to — and, No, I’m not just “being lazy.”

I still experience exceptional physical fatigue as well as a brain fatigue. It is very difficult and tiring for my brain to think, process, and organize new information or new activities. When a professor indicates that “most students will need to devote 8-12 hours  to outside the classroom work,” that means “16-24 for hours,” or often even “24-36 hours” (yes, literally 3x the recommendation) for me!

The “old” me would have been able to do everything in 5-10 hours.

The “new” me has a brain that is loosely analogous to an Etch-a-Sketch. Each time I read something, it is brand new to me — until I read and repeat it 3, 4 or 5 times, then it will eventually get burned into my processing unit. Happily, once it gets in there, it’s pretty solidly etched.

9. My stamina fluctuates, even though I may look “all better” on the outside. 

Cognition is a fragile function. Some days are better than others. Pushing too hard usually leads to setbacks in terms of processing performance, and often even in terms of manifest physical illness.

I’ve learned the hard way that trying to function at my old level will completely hijack my cardiovascular, endocrine, and/or motor-performance units. I will literally get dizzy,  have heart palpitations, or exhibit various tremors if I push myself beyond -or even up-close to- my new endurance barriers.

And No, it’s not like I could just “trade” my bike riding time (or any other type of time) for some “real work” time. There is no such thing as pure hours or energy equivalence here. In fact, I’d wager that each hour I spend on the bike actually yields 1.75 hours of productive “real work” brain time.

Obviously, this is a a topic I’d love to explore more fully once I dive into the whole “official PhD” thing.

8. Rehabbing from a brain injury takes a long time; it’s usually measured in years.  

Yes, I “graduated” from formal rehab back in August of 2011. And, yes, my rapid “graduation” was absolutely a certifiable medical miracle. GCS-9 patients do NOT graduate from rehab after 8 weeks. I beat the odds big-time and when I did, I assured you all that I was “fine.”

“I’m fine” is the world’s biggest, most common lie. I bet YOU use it almost daily, too  (although your lie likely resonates on a less-profound level).

I need to be honest with you now: I will probably never “be fine.”

My totally-not-at-all-complete “recovery” is one of the many, many reasons that I chose to step away from practicing law. I could no longer continue the performance farce. I simply did not / do not have what it takes to succeed in that profession at that level anymore.

Please resist expecting me to be who I was, even though I look better and often (though not always) “sound” better, too.

7. I am not being difficult if I resist social situations. 

Crowds, confusion, and loud sounds can still (but, thankfully, not often) overload me. My brain just doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy.

One of the true joys of student life is that I can fully and deeply immerse myself in a little “silent study” cocoon. This insular experience feels like salvation to me. When I am able to focus on my books and computer and notecards –without conversation, ambient media noise, performance expectations, or other distractions– I approach a whole new level of bliss.

6. If we are talking and I tell you that I need to stop, I really *do* need to stop … NOW! 

And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

I’m super “meta” these days. I need all kinds of time to process and think and work to make things make sense for myself and for you.

5. Please have patience with my memory. 

I wish, more than anything, that I could remember from moment to moment what has happened from day to day. But the truth is: If I don’t write it down and then also review what I’ve written 3-5 times, then it’s as if it never happened. One of the reasons I write this blog is to provide me someplace to go to rebuild/reinforce my “memories.”

Memory consolidation is a MASSIVE area of interest for neurological studies. It’s something that I plan to explore deeply once I actually get into the official PhD track. But for now, what I can tell you is this: Just because I don’t “remember” something about what we did last week (or last month, or last year, or, god forbid, yesterday!) does not mean that I don’t care!

I care very deeply, I just need time to write things down, review them constantly, and work to embed them in my brain — perhaps now you can appreciate how difficult school is for me!

4. If I repeat actions… like checking to see if the doors are locked or re-verifying where I put my purse/keys/coat/book etc., it may seem like I have OCD, but I don’t. What’s really happening is that I can’t always register what I’m doing in my brain. Repetitions enhance memory.

If you pick up on this sort of activity, this may also serve as a cue that I need to stop and rest — I would be grateful for your prompt.

3. If I seem overly sensitive… it could be emotional lability as a result of the injury (pre-frontal cortex damage) or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies, and are huge accomplishments for me.

I truly want to throw myself a party when I can consistently remember when, how, and why I need to check and respond to my mail.

2. Don’t confuse my optimism about who I am and where I’m heading with denial about my reality. 

The neuroscience community learns more and more about the brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. I choose to embrace an attitude of optimism and hope so that I can continue to make use of the coping mechanisms, accommodations, and strategies I learned about through my “standard” therapy, while also envisioning an even more remarkable and resilient future for myself and other TBI survivors in the future.

Every single thing that I and other TBI survivors now do in our lives is extraordinarily difficult for us. It would be easy to give up. Don’t deny us our optimism.

1. TBI rehab needs YOU! 

We can only recover when we are surrounded by people who understand and support us. Our recovery depends on you. Our recovery strategies may not seem “normal” to you. *We* may not seem normal to you! And, in fact, we may not BE, “normal” but if we have any hope of ever getting “back to normal” we need you to help us.

And you know that I’m now going to ask you to make a donation to Ride2Recovery, which I believe has THE most innovative and effective TBI recovery program out there! This won’t be the last time I ask. And I hope this won’t be the last time you donate.

Go to now! Enter my name, CRISTIN ZEISLER, and the tax deductible amount you wish to contribute. You’ll immediately be swarmed by, and warmed with, thanks.

I am not nearly done with my recovery.

I appreciate your support as I continue through this journey.

And I welcome your questions and comments.

8 Responses to “Reality Check.”

  1. Carissa Barker February 15, 2013 at 5:23 pm #

    Thank you for explaining your new reality. I always believed you but I didn’t have a good sense of what was going on beneath your super fantastic outward appearance.

  2. Cheryl Zalenski February 15, 2013 at 6:19 pm #

    CZ you are an inspiration. Your road may be long, and not the easiest, but your outlook is awesome. I toast your tenacity, and I look forward to each post on your blog. ~ the other cz

  3. Julia R. Wilson February 15, 2013 at 6:43 pm #

    As always, you are gloriously genuine, authentic and so 100% Z. I thank the universe that you exist – thank you for this post!

    • justadventures February 15, 2013 at 6:49 pm #

      “Gloriously genuine” = THE nicest way to call someone “stone cold crazy bonkers” … Well played, Ms. Wilson! 😉

  4. Cynthia Greene Ragona February 15, 2013 at 9:16 pm #

    Excellent post. Very helpful. As someone who knows your day-to-day existence only on my computer screen, I can attest that you seem more than fine from here. In fact, scarily fine, making the rest of us feel incompetent and unmotivated fine. Well, some of that may be true regardless, but it’s good to know where you are in your recovery and how much effort it takes. It makes you all the more impressive. Keep at it.

    • justadventures February 15, 2013 at 9:39 pm #

      The ongoing presence of multiple typos (despite quintuple rounds of proofing and editing) surely gives you *some* indicia of my still-shaky mental wiring, no? It’s mortifying

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