Baby Steps

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I was never that girl who spent much time dreaming about being a mom. I am not overtly “girly,” nor do I consider myself overly maternal (though I would bet our plethora of animals might say otherwise).

Rather, my desire to have a baby just sort of developed naturally over the course of time. During that timeframe, several of my friends and acquaintances became pregnant and had children. Yes, it is entirely possible to be thrilled for someone while feeling a tinge of sadness and regret that you are not the one sharing such news. I had to realize that feeling that way didn’t make me a horrible, selfish friend. It just made me human.

Time went by and I became pregnant at the end of last August. I shared our news very early on. I didn’t have misgivings about doing so because I figured that if things went wrong, I would want the support. It didn’t make sense to me to hide something I had wanted and waited for – if I had had a miscarriage, I would have been devastated. But what if no one knew? Paul and I would have been alone, and I didn’t see the point in that. It’s such an individual preference, I know.

I have shared so much in this blog about my recovery from grief and my injury. Yet, I could never had quite prepared myself for the entirely different door that being pregnant opens. And I have to say, it’s been at times very uncomfortable for me.

Don’t misunderstand – I am thrilled to have this baby. It’s just everything else that has thrown me for a loop. For someone who has shared so much, I am a very private person, and so many things have been a rude awakening for me.

I expected the advice – some welcome, some not so much. Paul and I have an idea of how we would like to raise our child, and I don’t think that always jives with how other people might want to do things – that’s okay, too, as long our wants as parents are respected.

As I pointed out, for example, I am not overtly girly, and I don’t plan to raise my child that way. If she grows up and wants to play with dolls and play dress up and watch 500 movies about princesses, then so be it. But I also don’t intend to push her toward being any one way. I just want her to have the opportunity to be herself.

As soon as people found out that I was having a girl, I found myself struggling with their reaction. Here is a news flash. I have one pink shirt in my own wardrobe. What makes people think that I need 500 pink shirts for my baby? Why do we just automatically assume that girl=pink? I don’t begrudge the color – it’s just not my preference. That hasn’t changed because I’m pregnant.

Which points toward the bigger issue and what I have been struggling with the most – yes, being pregnant and having a baby changes your life. But being pregnant in and of itself doesn’t mean that I am a different person or that my personality just changed randomly.

I am still me – I am still Jenni.

I didn’t like being touched randomly before – what makes people think I want to have my swollen, tender belly touched or rubbed? Especially out of the blue?

It’s like people consider my belly to be entirely separate from my body. Just to reiterate – it’s not. And as a public service to all other pregnant women, please stop reaching out and touching us without asking. Maybe there are some women who don’t mind, but I would bet the majority of us would at least like to be asked first. People didn’t reach out and randomly rub my stomach before I was pregnant. How weird would that be? Food for thought.

Paul and I also have struggled mightily to keep the baby “stuff” under control, which is difficult when people are excited and want to give you ALL THE THINGS. And again, I am so, so grateful that people are excited for us and want to help. I really, really am – but similar to the whole belly touching thing, be mindful of who you’re dealing with. Some people might welcome a plethora of random baby gifts, and that is totally fine. But some people might be more minimalist and just want specific items. Nothing wrong with either way of being – it just seems to be difficult for people to get sometimes.

I have struggled to maintain my sense of self over the last eight months. I have not ridden a horse or run a few miles in months, and it’s hard to lose that sense of self, even if only temporarily – but I don’t think people realize that sometimes. And so, it’s more important to me than ever to still be regarded as who I am and who I was before – even as I prepare to welcome this new life. Physically preparing for this change is challenging enough!

While grieving my father and then during my initial recovery from the TBI, all I wanted was to find some sort of sense of normalcy again. Emotionally, being pregnant has been a crazy balance between being so excited and so terrified. The only “normal” thing about this is knowing that in some way, everyone who has been there has dealt with these emotions in some way or another – it’s just always eye opening once it finally happens to you.

 

 

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It’s Just a House

Paul and I began 2012 like most other years – excited about the prospect of a fresh start and a new year to experience together. That spring, I was promoted at work, and we began to seriously talk about starting a family. I loved the little townhouse my family had purchased a few years before, but it was time (so I felt) to move up and along to a real house.

Paul and I got on a kick looking for restored bungalows, somehow ending up doing the majority of our searching in Durham. Paul wanted to be somewhere walkable to restaurants and other fun things to do, and I wanted a home for the future family I envisioned. We stumbled upon the listing for our house – I was instantly smitten. Built in 1916, it had been beautifully restored. Yet, we actually bypassed it after the first showing. We were still “new” to downtown Durham, having been UNC students.

The house was in an area of Durham still in transition, and we were temporarily blinded by the dilapidated church across the street (now an art gallery) and the uncertainty of what we were getting into. We looked at other places in the next month or two after our initial showing and just didn’t see anything that seemed suited for us. Something about the house stuck with us, so we went back and gave it another chance. It wasn’t perfect by any means, but it was perfect for us. We decided to put in an offer and make our home there.

We closed on the house the morning of September 28th, 2012. Less than two hours later, my mom called me. My dad had suffered a major stroke – a stroke that would take his life just over two weeks later.

Instead of unpacking and making our new house a home, I spent time planning my dad’s funeral. The next few months were a blur, and to be honest, I don’t remember much about that time apart from barely functioning. Yet, somehow the fog lifted a bit the next spring. I remember specifically that Memorial Day weekend – Paul and I took our two dogs to Umstead Park for a long hike. I crouched on a rock in the middle of the creek and watch my dog enjoy the rushing water. I looked at the sunlight filter through the trees and thought for the first time that life could be okay again.

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The next week, the accident occurred and I sustained my TBI, aphasia and apraxia. Once again, our “normal” life took a backseat. Instead of cherishing our first summer in the new house, we spent time driving back and forth to doctor and therapy appointments. I spent much of my time sleeping on the couch, trying to recover from the shock and haze of my injury.

All I wanted during that time was for things to be stable – to have something solid that I could hold on to. Life was not at all what I had envisioned the morning we closed on our house. But as it goes, life went on.

I attended an aphasia caregiver panel recently at UNC, and the more I hear other people’s stories, the luckier I feel about my own recovery. I wasn’t lucky to go through the process, but things could have turned out much worse. Here I am on the other side, and I’m able to utilize my experience in order to live a richer life.

I actually started writing this post a couple of months ago, when we confirmed the move date from our bungalow to a modern condo in Chapel Hill. It was a huge decision for us and not one that we made lightly. But with Paul in school and my acceptance to the Speech and Hearing doctoral program at UNC, moving back to Chapel Hill just made sense. And, with Baby Shafer set to make her debut this May, we wanted to down size and find a place walkable to school, daycare and all the places we love in Chapel Hill.

I’m glad that I sat on this post for a while, because if I’d finished it back in February, it would have been a pretty maudlin read. I was convinced that I would be devastated to leave the house that I had placed so many hopes and expectations on – I had placed the dreams I had for that house on an unreachable pedestal, just by virtue of how life turned out to be while we were there. That’s okay, but it wasn’t realistic to expect life to cooperate just because I wanted it to.

There is a pivotal scene toward the end of the movie Up where Carl lets go of the house he shared with Ellie. He understands at that point of the movie that it’s just a house and that letting go of the actual house doesn’t mean he has to let go of the memories he made there.

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I have learned to let go of a lot of things the past few years, and then more I have to let go, the more I understand that I keep what matters most close to me – what matters is not necessarily where I am but who I am with and what I choose to do with my time.

To spend time with Paul and our animals, to embark on this new journey together with a family and school, it’s more important than any expectation I could place on what, in the end, is just a house.

Direct Work-flow (Like a Boss)

Taking a speech disorder along to work–at least for the first few weeks–is a little bit like those really annoying Orbit commercials.

You know the ones, where the guy is sitting on the plane next to the giant-sized salisbury steak he just ate. Or the guy watching some sporting event I can’t keep straight (Is it football? Tennis? Who cares?) sitting beside the pile of nachos he just ate.

Mind you, I wouldn’t begrudge a giant pile of cheesy nachos, if it just wanted to show up for eating purposes.

However, I think we all get the point. Orbit wants you to know that–until you chew their delicious and refreshing sweet mint gum (my favorite)–your bad breath will serve as a constant reminder of the food you just ate.

Yeah, so, a speech disorder is sort of like having that giant pile of nachos following you around, minus the easy solution of chewing a wad of gum: annoying and always there, though at least it’s not smelly.

But look, I couldn’t sit around at home forever. Sure, I could have stayed home and in my comfort zone. Going to work was scary, plain and simple – especially since two months ago, I had no idea whether I’d be able to.

I felt like I was just starting to sound pretty good. I was a big fish…in my house. Going back to work made me suddenly feel like a very small fish–let’s say a guppy–in an ocean.

Why? It’s not because my coworkers weren’t understanding, because they have been.

But, when you have a speech disorder, you tend to feel really confident and on top of the world when your speech is going well. You feel like you can almost fake it: “Look at me! I’m TOTALLY normal!”

On the other hand, when your speech becomes unclear and you “mess up”…watch out. Hello confidence, meet floor.

I found myself immersed back in my job, saying words I didn’t have to say at all for three months. No matter how hard I worked and practiced, I couldn’t account for every single thing I’d be faced with.

However, in a way, it’s a good thing.

Is it better to stay home and be comfortable (and let’s not forget, broke)? Or is it better to push yourself? To keep trying to expand your horizons and take a giant leap forward in the healing process? I think the answer is clear here.

So, in the past two weeks of being back at work, I’ve learned this –

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It’s hard. It’s really, really hard. But I have to do it. All I’ve wanted this whole time is to talk faster and to sound like myself. However, when spending sometimes several hours on the phone, slowing down is the key to maintaining clarity.

My biggest fear was that people at work would think I wasn’t capable of doing something I used to. That my speech would trick them into thinking my intellect or capability was also impaired. But that’s just not the case.

Frequently, people with speech disorders COULD have other impairments due to whatever caused the disorder in the first place. But a speech disorder alone doesn’t mean someone isn’t smart or able.

The first thing I did was send a short email, including a link to information about verbal apraxia. Owning up to having a speech disorder clears the elephant from the room, so to speak. Sort of like saying someone is an alcoholic.

Just own it.

And if you’re like me, you’ll still have a hard time slowing down and realizing every five seconds that you can’t speak like you used (for NOW). So:

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I put this tortoise on my desktop to remind myself to slow down. (But most of the time, I catch a glimpse of it and think, “Wow, he’s really cute. I should name him.”)

Anyway.

The last thing I did was make a list of “trouble” words that lives on my desk. Yep, I’m not ashamed.

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I used phonetic spelling for some of the words – you see, the brain is a cagey thing, and so is apraxia. Sometimes, just seeing the word in print spelled out phonetically or broken up (you can see some in the picture) can trick your brain into saying it correctly. Anytime I come across a new word, I write it down. This list is sure to change every couple of weeks.

You see, apraxia can’t just be cured. It’s all coordination. Coordination you’ve had since you first learned how to speak–that’s suddenly gone. It just takes time. And practice. And more time and practice.

And pushing out of your comfort zone.

So I’m trying.

A hospital? What is it?

It’s a big building with patients, but that’s not important right now.

My dad and I loved Airplane, by the way. You know, if you’re wondering where the plethora of quotes has been coming from lately.

To the point. Last Thursday was the big day. Surgery day. Much like Christmas, I spent what felt like forever anticipating it and then, with no fanfare or special trumpet announcement, it was here.

With how much I’d been looking forward to the day, you would think the day itself would be filled with the promise of what this entails. A complete skull, finally!

It should have gone like this…

A flock of doves carried the piece into the operating room, and triumphant music played as I walked into the hospital…

In reality, I started preparing Wednesday. I ate a good dinner, followed by a delightful shower, in which I had to scrub from head to toe with a surgical soap that smelled like it could wilt flowers. The usual no eating after midnight was followed by another shower/scrub Thursday morning. I had some water and ginger ale up until 9:30, since we were to check in at 11:30.

Checked into the waiting room. Then waited. And waited. Lots and lots of time to think. That does no one any good. My surgery was originally scheduled for 1:30. That came and went.

They called us back after 3, and suddenly everything that seemed so far away was slapping me in the face.

I had to confirm my name, address and birth date more times than I could count. Apraxia combined with nerves and a freezing cold room made this quite a bit of fun.

Since I hadn’t had anything to drink in hours, anesthesia had an interesting time finding a vein. After the third try, I promptly thought it appropriate to pass out (oops!). The fifth try was the lucky stick…A few more minutes, and it was time to say goodbye to Paul.

I was in such good hands – and I already knew my surgeon was awesome. But for some reason, in that moment, as they wheeled me out and Paul and I said our goodbyes, I felt so small and alone.

It’s a weird thing – to feel alone, even as you’re surrounded by a team of excellent doctors and nurses. I think how I felt just illustrated the reality – like it or not…this happened to me, and I had to do this.

I moved on to the operating table, took two deep breaths of the mask and was out. And, as soon as I was out, I was back.

I was told that the surgery went great and was wheeled to the post-anesthesia care unit. I was in and out of sleep, but somehow managed to help prop myself up on the table when I was sent to get a CT. And more importantly, of course, I spoke. My speech was okay.

Cue singing birds!

I am so grateful that the surgery went well. I still feel a bit caught in limbo because the next few weeks are critical to ensure the incision starts to heal with no infection. An infection would mean I have to do it again – plate out, clear the infection, plate back in.

To which I say, a big fat HELL NO.

Pardon my language. But you get it.

I am so lucky to have Paul’s support. But I found myself thinking about the people who don’t have the same kind of support. I thought about how scared I felt, and I had someone I could confide in and depend on. How scary it must be to not have that. I’ve been looking into volunteering at the hospital soon. If I can support someone else going through something like this, I will.

I have a lot more lessons learned from my brief stay, but I’ll save them for the next post. I just wanted to share how it went, and express my gratitude to UNC for yet again giving me a new lease on life.

I knew there was a reason I came to school here and never left.

Just wait 'til you see what's under there...

Just wait ’til you see what’s under there…

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.

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!).