Live and Die

To my dad,

A year ago today, you had the stroke that would take you away from us in two short weeks.

Shortly before that happened, my favorite band–the Avett Brothers–released a new album. You were always fascinated by what I was listening to. You would always ask me what radio stations I listened to in Durham, what new artists I enjoyed, what my favorite bands were doing.

You and I had different tastes in terms of “new” music, but we shared a love for all things music. I credit you with my love for oldies that most kids now don’t get the same experience with. But, that’s what happens when you grow up with a dad who owns a radio station.

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But, back to the album. After your stroke, I found myself doing the same routine every day. I would wake up early, drive to the station to set that day’s logs, and then make the trek to the hospital. Everything I did up until the point I saw you each morning was filled with a sense of urgency – I HAD to get there and see you. And every day, I listened to Live and Die, because I didn’t know what else to do. Hearing that song reminded me of you, of home, and was something comforting in what was otherwise a time of uncertainty.

By default, that song became the theme to my days. The gel that held me together. It seems a little odd to say that, but to you, it won’t.

I made you a playlist of your own, and I would play it for you each day, along with the radio station. I put your favorites on it. Some Beatles, Roy Orbison, and others. I even put Somewhere in Time on it because that song was special to us. You walked me down the aisle to it.

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You couldn’t talk, and the only time I really saw you awake was the first day I was there. But I hope you could hear it.

I am not the most demonstrative person. I have always been better at expressing myself through writing, but I’m trying to be better about this. I never thought I would have to say goodbye to you so soon, and I don’t think anything I could have said at time–or now–would have been good enough. One thing I have learned is that there is never enough time. Not even if you know what’s coming.

You weren’t perfect. But who this? I’m not even sure what perfection should be. All I want to be is happy and be a good person. You were those things. I say that means you did what you were supposed to do here. You made me and my mom happy – you took care of us.

I am glad that you didn’t have to worry about me when I got hurt, because I know you would been devastated. But I am selfish and want you here anyway. I don’t like that you’re gone and my mom is far away without you (though you should know that Paul and I are trying to get her up here!).

You know that I have never been an overtly religious person. But the oddest thing happened the night I got hurt. My last memory that evening was talking to a rider in my class before I was injured. Then I saw you.

Now, I have gotten to meet with the first responders who helped save my life that night, and I found out I was having some breathing issues and was in and out of consciousness. They wanted to fly me to UNC, but no one could fly that evening, so the ambulance driver got me to UNC in record time. Bet you would have appreciated that…seems my ambulance would have put your Mustang to shame that night.

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Maybe it was my brain playing tricks on me, but I don’t think so. I saw you that night, and we talked without words. The next thing I remember is waking up and seeing Paul. I think you were looking after me. Maybe you’re not here in person with me anymore, but you were definitely there with me.

I am who I am because of you and Mom. As Paul and I say, we’re not perfect, but we were perfect for each other. I miss everything about you, even the things that drove me crazy.

Most of all, thank you. Because of you, I am stubborn enough to keep fighting for this recovery even when I just want to punch the wall or give up. And when I think I can’t do it, I hear your words very clearly in my head – “Yes, you can.”

We miss you here. It’s not fair. But that’s been made clear this year.

What matters is that we loved each other, and we knew it.

I still can’t sing every song right now – my voice is coming back, but it’s still a work in progress. But, you know the first song I could sing again in full? Our favorite.

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Jenni

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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.

September Worries

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I was prepared to write a clever post about how to take your speech disorder along to work. You know, in celebration of completing my first full week back at work.

But, I have something else to say first.

As great as it was to be back at work last week, I found myself mired in worry.

Real, true worry is much like a weight. It can be cagey. Sometimes, you can deceive yourself into thinking you’ve got it conquered. But it’s always there, and it can be crushing.

I’ve been worried about my mare. And though I’ve not talked specifically about her much in this blog, she’s a very special horse to me.

First, she had many opportunities to kill me as I fumbled my way around learning dressage on her – and didn’t. She had buttons I’d never seen and had no idea what to do with.

She has been a wise teacher, giving me only as much as I ask for – or was capable of asking. With her help and much instruction along the way, I finally learned how addicting a canter half pass can be, the true angle of a shoulder-in, and the power of a real extended trot.

More importantly, she tolerated my mistakes and my faults. Many times, I have been a less than perfect rider, but I have always tried to learn – even if it took me a few days after a hard ride. I can think of a few times where I apologized to the mare for losing my cool when I didn’t think she was doing it right, when most of the time I just wasn’t asking correctly.

Yes, she has taught me a lot. And this summer, she took care of me in a different way – being careful with me as I handled her after my injury. Enjoying time together just being – grooming, eating grass.

Now she’s sick. Laminitis brought on by a steroid injection. A pretty cruel twist, if you ask me. Here, I tried to do something for her – to take care of her, to soothe the discomfort she has from high ringbone…and in a rare case, here we are. Monitoring her like a hawk, x-raying what will be each week, worrying and waiting.

This worry. I have felt this way before, in an even stronger sense.

Last September and early October, my days consisted of a haze – as I spent my days in the hospital, dazed and in shock, not believing that my dad had suffered a major stroke. Not believing that he could NOT be with me. I spent two weeks by his side in the hospital before his body made the decision to leave us. Two weeks of October that felt like an eternity. I had tried so hard to be positive, to be hopeful. To do all that I could.

And still, it was beyond my control. Despite my desperate wishing, I could no more control what happened than I could stop the earth from turning.

So here we are now. I found myself wondering why I couldn’t cry more this week. I was concerned. I wondered what was wrong with me.

And that’s why.

It’s because I can’t control the outcome. I can control how I approach the situation at hand – to make sure my horse has the best care and that I do all I can to make that outcome – recovery – successful. But if anything, this past year has taught me that life will do what it does.

Sometimes that means we’re all surprised. Sometimes we’re crushed.

But you knew that already.

Monday Night Rehabilitation

Over dinner yesterday with friends, I said that I sometimes feel like I’ve been watching my life through a movie. I don’t mean that to sound odd, though it does.

Don’t get me wrong. I have certainly experienced every step of the way – the fear, the anger, the pain, the uncertainty. But today, I find myself at the conclusion of the 97th day since my accident.  It just seems so unreal to me.

I’ve tried to really think about this–why it feels so surreal to me–and I think it’s largely because I’ve just been doing what I could to get better. That’s not to say that I haven’t had a chance to think about what’s happened. But, it also means that I’ve not really thought of myself as courageous or inspiring, which a few very kind and generous people have told me. To me, I’ve been doing what any other person in my situation would do – trying my hardest to get better.

We all have choices in our lives. And I think we all know that despite our best efforts, we can’t control what life has in store for us. Yet, we can control our reactions. The choices we make and how we approach certain situations. I made the choice that despite not knowing 97 days ago whether I would ever speak again, to try and get better. I didn’t know whether I could work again, talk again, write sensibly again. But I wanted to try – I HAD to try.

But, am I really courageous for trying? It’s not like I should get a medal or something for wanting my life to get back to “normal.” What if I had tried my best but not been able to speak again? Would I still be considered as courageous? Inspiring? What happens when you put in the same amount of effort but don’t succeed? And who really defines what success is?

I’m still not sure if I’ll be able to get back to 100 percent in terms of my speech. But I’m still going to try my best. If I don’t get there, will I remember the successes I’ve had along the way in trying or the fact that I didn’t get back to whatever bar I set for myself? Just something for everyone to think about, no matter what the goal is.

To that end, I sit here tonight, having just completed my first day back at work. I’ve gone back full time and am getting back into the swing of things.

So the things I’ve been missing, that I desperately wanted back….well, they’re not perfect. But, I can now (usually) order confidently at my favorite restaurant. I can sing along (for the most part) with my favorite song. And I’ve gone back to work. No, I can’t just forget what happened. Every day, I am reminded in some way.

But, if you had told me 97 days ago that I’d be sitting here tonight, I’m not sure I would’ve believed you. That is, if I even would have really understood through my aphasia haze.

Am I someone special? Not particularly, and I don’t mean that as cut down to myself. I’m just a person who wanted her life back. I have been lucky. My life could be very different, even more so that it already is. So many people feel the same way – sometimes it works, and some times it doesn’t, but it’s not always from a lack of trying or desire.

When you think about it that way, it’s hard not to be grateful for what does work out. For me, I continue to be grateful that I have the chance to keep working – not only in my job but in trying to get better.

In my speech, yes. But also as a better person.

On Gratitude

I think we all know that life isn’t a fairy tale. Life doesn’t guarantee us a happy ending just by virtue of us living. Sometimes, bad things happen to good people – and more perplexing, sometimes good things happen to bad people.

But, if there is an overarching theme to many of these posts, it’s just called being human. All we can do is the best we have with whatever situation life has thrown at us. You know that whole “make lemonade” expression.

Now, while I do happen to enjoy some sweet, cool lemonade, the process of making it can try a person’s patience. Because often what those people who are advising you to make lemonade have neglected to say to you is that your life after is going to be (sometimes drastically) different. I’ve written before that the hardest part of accepting a disability or impairment – temporary or otherwise – is that you’re not the same person you were one week ago, or three months ago, or seven years ago. Becoming accustomed to this new state of “normal” is where I suspect many people with acquired impairment taste the bitterness of this whole process, understandably so.

At least, it’s how I’ve felt at points during this process.

And yet, tonight I find myself writing about gratitude.

Last Tuesday, I taught my first therapeutic riding class since the accident. Since the accident occurred on the last day of the spring session, I actually didn’t miss any classes. All the girls I had been teaching returned, so we all “got back on the horse” so to speak. After that class, I had a special surprise waiting for me. One of the first responders to my accident was waiting to say hello. He told me that the rest of the first responders would also like to see me at some point.

That point came tonight. I had just finished my class, and they hadn’t arrived yet, though I knew they were coming. As the horses walked into the barn, I heard the unmistakable sound of an ambulance (fortunately without the sirens!). Single-file, a group of people walked down the sidewalk with smiles on their faces. Just seeing these people made my heart sing. Nearly all the first responders and EMTs from my accident had come to visit, just to say hello.

While Paul and I wrote them cards, anything I could say felt so inadequate. Yet, the responders continued to tell me that just seeing me was enough. The entire experience felt so surreal. I found myself bathed in the strongest feeling of gratitude I have ever experienced. Words are not enough to properly express my thanks to these people for saving my life.

I tend to write using a lot of humor, and that gets me through most things in my life. I tend to amuse myself a lot, which I guess is not a bad thing. But tonight, I want to put aside the humor and just say this:

The first responders from the Orange Grove Fire Department and EMTs saved my life. Plain and simple, I would not be here without them. They were in and got me out in less then ten minutes. When I was having trouble getting breathing and staying conscious, they stabilized me. Through their efforts, I was able to get to UNC quickly so I could have the surgery I needed to save my life and preserve my ability to recover.

Most impressively, they really cared. They kept up with my progress and checked in for updates. I know that so many times, they work so hard but don’t know the end result of their efforts.

So let me go back to beginning of this post – the whole happy ending/make lemonade, etc., part.

This process is not over for me yet. I have a lot of work left to do. And there have been times when I just wanted to break something. Yet, something has also changed in me. No, I’m not perfect. I can still be impatient, get stressed when I shouldn’t, worry about things I shouldn’t. But, I haven’t lost sight of the fact that all of this is because I’m HERE. I’m alive. Because of these people and the team at UNC, I have the second chance to live my life.

Last year, my dad had his stroke IN the hospital and still died. Yes, BAD things happen. But because of this, I am reminded not to ever take anything for granted. My dad had so much life left. So many things he could have done. I am determined to live my life in turn and the time I’ve been given. Because of these first responders, I have more time.

I cherish being able to do the things I love and to love the people I do.

My gratitude is immeasurable.

Gratitude.

Gratitude.