One Foot In, One Foot Back

Bitter, party of one.

Okay, that’s not quite true. I still can’t believe this happened to me. And yes, sometimes I get angry.

But you know the odd thing? I’d like to say I’m bitter, that I go to bed every night poking pins into a voodoo horse-shaped doll. But I just can’t. And I don’t.

Of course, I’m human. I wish this had never happened. It’s difficult not to imagine what my life would have been like right now, otherwise.

Sometimes, I feel a bit cheated when I think about the month of May. Both Paul and I were just starting to feel like ourselves – like we could finally remember what it felt like to be happy again after losing my dad.

You may have started to notice a common theme in these posts so far. Because, what I’m really writing about here is just being human.

Paul asked me something a few weeks ago that I’ve given a lot of thought to. At the time, I still couldn’t speak more than a few words, so I was using a dry erase board (a great tool!). I was about to turn 30, and I was crying. Not because of the number – but because I couldn’t believe that I was going to turn 30 and was on disability.

Now, of course, the disability itself was needed – I couldn’t work and needed to focus on recovering but we still needed to survive. But, it was the loss – what the disability represented – I cried because it reminded me of what I used to be. I was no longer just Jenni. I was now Jenni with a TBI (is that cooler than Jenny from the Block?).

I was really struggling to accept the “new” me. I began to finally speak (very haltingly at first), and I felt stupid.

Paul turned to me and asked what I thought about the riders I’ve been teaching for years. I didn’t quite get where he was going.

“Well, do you think they’re stupid?”

I looked at him like he was crazy.

Of course not! Why would he even ask that?

“What makes you different?” he said. I would never tell my riders to stop trying and pushing themselves to get better at riding. I would never tell them that they can’t be skilled, confident riders (of course, they already are!). I would never, ever look down on their disability or call them stupid.

So why am I doing it to myself?

I sometimes wonder how many other people feel this way. I see it sometimes in my weekly aphasia challenge group. At least I’m not the only one to pepper my speech with periodic self-disgust when a word just won’t come out right.

But, why do we blame ourselves when what’s happened is beyond our control? Having a TBI or a stroke or a speech disorder – well, it’s not high on many people’s wish lists.

We can’t live one foot in, one foot back. We can’t always be looking to the past – the “could have beens.” And we can’t fault ourselves for trying to go forward in this new reality.

Even if we think we sound stupid, at least we’re trying. That’s more than some people get to say.

Do it

Bueller?…Bueller?…

I miss a good, old fashioned sick day.

I’m not talking about the kind of sick day that Ferris Bueller had.

Rather, I’m talking about the kind of day where you (really) feel just bad enough to stay home from work. You sleep in, pop some Dayquil, and spend the rest of the day dozing off and on while the TV plays a crappy assortment of daytime shows. You recover in one, maybe two days and go back to work or whatever you normally do. And admit it, while you don’t love being sick, somewhere inside, you even felt a tad bit grateful at the opportunity to spend a couple of days just breathing and taking a break from life.

It’s ironic, because I’m currently approaching almost two months of recovering. Absolutely no part of this process has been relaxing or a welcome break from my normal life. In fact, as it turns out, not only did my speech disorder rob me of the ability to communicate that I used to take for granted, but my TBI in general robbed me of the things that made me who I AM.

In a way, all the things that I loved to do, the things I did for myself and for my marriage, even the things that I didn’t necessarily love to do but had to be done anyway…that shaped me as a person – my role – were gone. And I had to figure out how to adjust, how to get them back and modify them, anything to help me feel like a normal person again – not just someone who is injured and recovering.

In truth, first you have to figure out your role (and really, let’s say roles) and the various layers that represent what you do and ARE.

There are things that you do – and these are important.

Then, there are things that you NEED – your hobbies, your passions, the things and activities that make you feel whole.

I think sometimes that other people get too wrapped up in the actual injuries – and yes, it’s important. But we’ve sustained more than just a TBI, a stroke, a infection, whatever – we’re also reeling from the loss of things that made us who we were. Having this type of major disability can make a person feel awfully unsure of where she belongs.

At least for me, I felt like I was finally starting to figure out where the puzzle pieces belonged in my life. My TBI and speech disorder swept the puzzle pieces up and thew them back into the box. Time to start over.

It’s more than just the loss of “things.” In many cases, it can mean a total loss of independence (sometimes temporary and sometimes not).

When I first came home, I couldn’t speak. Couldn’t write a text without having my husband proofread it. Couldn’t bathe alone. Couldn’t even walk up and down stairs alone. Damn, I couldn’t even vacuum the rug (and it drove me CRAZY! – yes, our house tends to have a lot of fur on the floor at any given time).

I’m lucky – I’ve been regaining my independence over the past two months. I can now drive, do things I used to do around the house without Paul worrying – yes, that includes vacuuming the rug. My language and speech is improving, though I always want more.

No, I can’t ride yet until my second surgery (an intact skull is sort of important). But, I can drive to the barn and just spend time with my horse. That means the world to me. It’s MY time, and I desperately needed that sense of normalcy.

So what was your role? What things do you value? What makes you who you are?

Most importantly, how can you get back to doing those things? Maybe you need some modifications, but I am willing to bet you can still make it happen. Later on, I’ll post a few ideas on the Resources page.

No, recovery isn’t a simple process. But, since we have to do it, take it. Mold it. Make it your own. Maybe that way, we can all find our way back to being who we are.

Pick Your Battles

The good news is that I can now take baths without Paul watching me like a hawk.

Why yes, I consider this a positive development. I’ve never been particularly coordinated anyway, but I’m now apparently capable of bathing without causing considerable worry to Paul that I’ll trip, fall and/or smash my head in some other fashion. Progress (let’s not mention that he let me start driving again before this, shall we?).

At any rate, the irony isn’t lost on me. How many of you guys took a bath or shower today without your significant other having a panic attack the second you drop the soap and it makes a really obnoxious thud (really, something that small?!)?

The fact is, there are a lot of times where I feel like I am working so hard to get better but still feel like I am standing still – and the world is just moving on fast forward. People are going about their lives, and time seems to be in everyone else’s favor but yours.

It’s sort of like being a zoo animal. People stop by and stare a while. They are interested in what you’re doing. And they might really care – they might really feel bad that you’re at a zoo and not running free in your natural habitat…but at the end of the day, they get to go home. And you don’t.

I first realized this last year, when I lost my dad.

My dad was my best buddy. He was so young – 63 – and passed away due to complications a very unexpected, major stroke.

I realized sometime later, that somehow, other people were still going on about their lives.

But I thought, how can this be? Don’t they know how much pain I’m in? What I really wanted was to make people understand – “Hey! Wait a minute! Don’t you get it? I’ve LOST something here!”

It took me sometime to realize that just because other people didn’t feel MY loss didn’t mean they didn’t care. It’s only natural to want the world to stop when something tragic has happened to you. But life has other plans.

I realized that I had started to think that way about my accident.

I worried that people would see me talking and think the big struggle was over, when in fact, it’s just as difficult (if not harder). I thought – “Don’t people know how HARD I’m working at this?”

Maybe you have had similar thoughts about something in your life. Maybe it’s a TBI, maybe it’s a stroke or the death of a loved one.

What it’s taken me a long time to understand is that no one else may understand your struggle. It may not have personal relevance to them. But, on the other hand, YOU may not understand someone else’s difficulty.

Everyone is fighting some sort of battle – it’s just going to vary. It’s not about who has it worse. It’s about understanding that empathy and compassion can be invaluable.

This is a lesson I have needed to teach myself – maybe you do, too?

Do It Anyway

Yesterday, I scheduled the tentative date for my second surgery. Unfortunately, the section of skull hit was too damaged to re-use. So I’ll pretend that it’s super cool that I get a “new” piece of skull made. I’ll be the bionic woman! …Right.

A little under a month from now, I should be done with the surgery if everything goes well. This is a great opportunity and exactly what I was hoping for.

But, I’d be lying if I said I wasn’t terrified, as well. I’m so terrified about any further damage to the speech area of my brain. I’ve worked so hard these past few weeks to make progress. Even though the goal is NOT to touch my brain – well, I’m nervous.

So – I’ve been thinking quite a bit since yesterday. The way I see it, I have three options.

1) Find a bubble. Live in it forever. No surgery!

2) Ignore the bubble. Skip surgery! Never ride again, or do anything else fun or remotely risky.

3) Have the surgery. Be scared. Accept the risk – and also, the reward – ride, stop fretting some lady is going to hit me in the head with her purse when I out, go down a Slip n’ Slide, ride a roller coaster, what have you.

Only one of those options seems feasible.

Thinking about being nervous about this next big step sort of reminds me of the first time I talked again out in public. Sure, it’s “easy” talking to Paul or to my friends and speech therapist. But talking to someone new? It was (and can still be) intimidating.

Naturally, I started to wonder how many times we hide from what we really NEED because we’re scared or it’s hard. How many times do you hide behind your speech disorder because it’s easier to let someone speak for you? How many times do we let the opportunity to better ourselves pass us by because we’re used the way it’s always been?

If a doctor told you that you’d never, ever get better after a certain period of time – would you accept it? Or would you seek another opinion and keep trying?

Just some things to think about. Sometimes, there is no way around the greatest risk we face. That might constitute talking when we’re scared of saying the wrong thing. Or it could be facing a new procedure that scares you. It’s hard not to know the outcome in advance.

No one does though – know the outcome in advance. Do it anyway (thanks, Ben Folds Five!).

Introducing Your Speech Disorder…

Meet my millio-…wait, that’s not right. Sorry, I really need to go back to work. I have been spending way too much time watching the Millionaire Matchmaker¬†on TV. What I mean is, meet my speech disorder!

This is something I’ve been struggling with. Just how does one go about introducing a speech disorder? This struck me as soon as I was well enough to start going out – especially out to eat. Which, you know, requires you to order.

If you have a speech disorder but are otherwise “normal” looking, when you are not verbal or are somewhat fluent or have word finding issues, you’re liable to get some interesting reactions.

People seem to think that:

A) You’re deaf, and they will then proceed to talk very loud or will completely ignore you and talk only to your family/friend/whomever.

B) You’ve got some intelligence issues, and will then proceed as above.

C) You’re weird because you must be completely healthy if there are no outward signs to the contrary and so…

D)…You’re rude.

I’m envisioning the face on our poor, confused waiter the first time Paul and I ventured to P.F. Changs. I was still non verbal, so Paul ordered for me, though I of course could very clearly understand him. And, you know, apart the well-hidden dent in my head, I looked perfectly fine.

Once I started talking, albeit very awkwardly, I was perplexed about how to explain my disorder.

At first, I just said to waiters or whomever, “I’m just slow.”

It then occurred to me, that probably wasn’t the best description to use…(see item B above).

After some thought, I just decided to be honest – I’ll do my best to say something right the first time so people understand me, but that’s not always possible. If that’s the case, then I just say – “I have some difficulty forming certain words, but I can understand you – when I have issues with my speech, please be patient.”

Our responses may vary depending – are you verbal? If not, consider carrying around a card that lets people know your disorder and that you can hear and understand them. Keep a pen and pad handy so that you can do as much as you can – for example, it’s easier to let your friend order lunch out to eat. But why miss out on the practice? Write it down if you can!

If you’re verbal, swallow your pride (I know, easier said than done – trust me) and USE YOUR WORDS! Don’t be afraid to say that you need more time. Slow down.

Sometimes just saying that you have a speech disorder takes the pressure off to be perfect. Sometimes, the only way is through.

Let Me Finish!

There are two really, really annoying things about having a speech disorder. Okay, I lied. I know there are infinitely more than just two…but let’s go with these two points for the time being.

The first, of course, is not being able to get your words out. You know, without tripping over the words or better yet, your own mouth (shouldn’t our mouths LIKE to speak?!). It’s so frustrating to know exactly what you want to say but feel like you are watching the words come out in slow-motion (and probably pretty distorted). It’s like being the star of your own slow-motion movie, while everyone else goes about their normal lives.

What’s the second really annoying thing?

Well, if your like me, you’re trying your ¬†hardest to actually pronounce each word correctly. You know that you must – if your want to brain to make the correct connection – and in hopes that next time you want to say that word, it just may be a little easier.

So, when well-meaning family or friends cut you off in the middle of a sentence to “help” and guess what you’re saying…or even cut your off and just assume what you’re saying…well. That’s incredibly frustrating.

Here’s why.

First, like I said before, it’s so important for someone re-learning to actually try to pronounce each word correctly. Sometimes, you’re not quite ready yet. Sometimes, it might take your brain a few tries or even a few days and weeks. But, trying is what will solidify the connection in your brain – so that one day, it WILL be easier.

Also, it is very tiring learning to speak again. Interrupting just makes it worse – either we might feel exhausted from our effort and now we have to start over again, or we might feel compelled to not try as much if we are continually interrupted.

Families and friends – believe me, we know it’s incredibly slow and sometimes painful to listen to. But, no matter how much your want to, please try to let us finish. The only way we can get better is to practice.

Trust me, I am horrible at being patient. But in this case, it’s so necessary.