A Slight Figure of Speech

I have a slight bone to pick with our old friend FDR.

Over the past year, I have the pleasure  luck of experiencing fear, and I’ve certainly found there’s more there to fear than just fear itself.

In fact, I’ve discovered there’s much more to the concept of being afraid – the degree and type of fear we experience.

Of course, I’ve experienced fear plenty of times over the course of my life so far. But until this year, I had never truly experienced the type of fear that courses through your veins. The type of fear you feel on a cellular level. That’s fear.

But the thing is, fear rarely travels alone. It’s more often than not accompanied by something TO fear. Fear of death, fear of surgery, fear of embarrassment, fear of failure. And the degree can vary, as well. You can empathize with someone else who is afraid of something, but until that something has actually touched you, it can be hard to really understand in full.

In a few short months, I’ve experienced the fear of the unknown – waking up after the first surgery, unable to speak or really understand why I was in the hospital. Then the fear of the unknown transitioned into being quite tangible as I re-learned how to speak. The aphasia and apraxia burned like two hot irons, each branding me with the fear of embarrassment.

And yet, all of these emotions are completely different from the fear I felt the day my mom called to tell me that my dad had suffered a major stroke.

But, the question is this – should the type and degree of fear invalidate the way someone feels? Should the situation itself invalidate the way we feel, depending on what is it?

The answer is no.

It’s just part of being human.

A few days ago, I was touched by a story about young guy around my age who has ALS. I found myself in awe of his and his wife’s courage. It occurred to me that we are of course in very different places. While I have found myself in fear of my life before, I have been granted the opportunity to get better. That is something that this man will likely not see for himself, as much as researchers are trying to find a cure. And how scary must it be to really know that.  Yet, what is he supposed to do? Fold to the fear or keep fighting? What are we doing here if not to fight and just do the best we can, for as long as we’re here?

After reading his story, I felt a little stupid about my fear of embarrassment – though it’s more than just that. I fear failure. I fear going to work and failing at something I used to be successful in. I fear I’ll never get back to 100 percent and that I’ll always be trapped by my (insubordinate) voice.

What I’m coming to understand, though, is that I just can’t always invalidate my feelings. How I feel is still relevant because it’s my own experience.

Each feeling we experience and each story has something to teach us. It’s not about who has it worse, or who has it better. If we can really learn how to listen to our fear, then we have the chance to use it to our advantage. Now, that doesn’t mean we won’t feel afraid. But, sometimes fear can push us, motivate us to try to conquer whatever it is that we’re scared of – no matter what it is.

And if we don’t end up victorious, at least we can say we tried. That we really lived.

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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…

There is No Stopping in the Red Zone

A few weeks ago, I wrote a post about facing the things that scare us, that challenge us or make us nervous.

Just do it anyway.

So tomorrow, I’m doing it.

I’ve waited for this day since my accident. Tomorrow, I go in for my cranioplasty.

Yes, friends, tomorrow I officially become the Bionic Woman…She who is able to fly, leap buildings in a single bound, and fears no stray elbows or oversize handbags!

So what is a cranioplasty, you ask? I am pretty sure they took a CT of my head a few weeks ago, then sent the scans to a top-secret factory, where wizards create each unique piece out of magic and butterflies.

Or, a company makes the piece out of a special composite, designed to fit perfectly over the hole currently in my skull. The surgeon will then attach the piece with titanium screws. The doctors have all been very concerned about making sure I understand that the screws will NOT set off the airport metal detectors.

WHEW. THANK GOD.

Now that I am clear on that, can someone please let me know how the rest of my life will be with this plate in my head?

Anyway.

I am scared, yes. But, I need this. Not only to make my skull complete again, but to move on with the rest of my life. I am more than ready to have this last physical milestone behind me.

No, the consequences of my injury won’t magically resolve with this surgery. I still have a lot of work to do on my speech. But, the surgery will let me resume the things I am passionate about, like riding. And that goes a long way toward making a person feel whole.

Once I can successfully put this behind me, I can continue to work hard on my speech. And believe me, I work HARD. I’m always, always practicing.

So – I’ll face my nerves tomorrow. And once that’s over, I’ll keep facing my nerves in different ways – talking as much as I can. Speaking even in situations that make me scared – unlike my surgery, not scared of something physical but of failure. I’ll do it because I have to in order to get back to the things I used to take for granted.

I can promise I’m not going to take those things for granted again.

Having a voice again provides a sense of freedom, though it’s still hard to have so much work left to do. But – I’m looking forward to the freedom that this surgery will offer me again.

And you know, going through the airport metal detector.

freedom

A Comedy of Errors

I often feel like I am in the Twilight Zone the three times a week I am required to navigate the UNC Hospital’s parking deck. I’ve never seen such a variety of driving skills on such prominent display.

However, yesterday’s events felt like something straight out of an episode of Seinfeld. Only, there was nothing all that funny. No Kramer in too-tight pants. No soup for me.

I had two errands to do after speech. One was to go to Target to buy something delicious to make for tonight’s cookout with friends. The other was to drop off some long-overdue dry cleaning.

Now, when I say these clothes were long over-due, I mean the pile included a suit I wore to a work conference.

In February.

But anyway. Pretty simple, right?

I walked in with my embarrassingly huge pile and plopped it on the counter. Dry Cleaning Lady, who shall be henceforth known as DCL, asked for my number. I couldn’t remember if the account was under my number or Paul’s….because, you know, it had been so long.

I painstakingly gave her my number. Now, my number can be rather hard for me, because saying “zero” can be tricky at times. And, I have the good luck of having two zeroes in my number back to back.

The account didn’t show up under my number. Fine. I told her to check under Paul’s number. I gave it to her, to which DCL replied, “Wait, the same area code?” Sigh. Yes. Repeat area code and phone number.

“I still don’t see it,” DCL said. Odd. Husband has definitely been here more frequently than me (usually because he’s taking it for me). “Can I check under your last name?” She asked.

Yes, yes, please do. And get me out of here! People with speech disorders like nothing more than to be put on the spot.

Not.

“Is your first name Jennifer?” DCL asked. I replied it was, and though I found it odd because I NEVER go by my full name, I was just grateful to get this over with. DCL begins to tag my clothes and printing up tickets….that I then noticed were printing up the wrong name.

No! How can this be? What kind of hellish dimension of apraxia IS this?

I emphatically told her that was NOT my name and promptly wrote down my name and Paul’s number – because I was tired of this. And, wouldn’t you know, she found me. The real me. Finally.

So, some lessons learned. I suspect my apraxia combined with DCL’s lack of English as a first language played a strong factor here. But, the frustrating thing is that I CAN spell my name and the correct phone number if:

1) People wait for me to finish (ah ha!) and actually listen

2) People just ask me if they don’t understand I’ve said or need me to repeat

However, the world don’t work like that sometimes. When you’re used to not having to pay such close attention before you listen or reply, suddenly having to do so can be difficult. I certainly don’t fault people for this. On the other hand, I wish people who don’t understand what I’ve said would just tell me so. I am happy to slow down and try it again.

In an ideal world, DCL would have said something like, “I know you said that your husband has an account here, but the number you gave me isn’t coming up. Can you repeat it one more time?” Or, “Could you please spell your last name?” Instead of assuming she had it right – though how funny is it that the person had the same first name as me? That’s what I get for having a common first name.

Having to repeat, even if it’s hard – well, I much prefer that to pretending that you’ve heard me and then going around in circles.

At any rate, the clothes have been successfully dropped off. Whew. To my disappointment, neither Seinfeld nor Kramer popped out from behind the racks.

I can say, though, that there should be a silver lining here. Getting back to the mundane tasks like this that we ALL have to do, is a positive. All I have wanted since the accident is to get back to “normal.”

What normal means, I’m not sure at this point. But this must surely be included.

Destiny is a Fickle Bitch

Sorry for the language (but not actually, most of the time, my ability to say foul language is surprisingly intact).

Paul and I have been watching way too much Lost (wait, there is no such thing as too much Lost…). We happened to start the finale of season four this morning, and I caught that little gem.

No matter how you put it, reality can be fickle. It can also be tragic and wonderful and surreal, too. I have always tended to stray from the idea of waiting for “destiny” or whatever that may be. Try as we might, we can’t always make things perfect. Which makes me think about the idea of perfection, which can be a dangerous concept.

First, let me ask you – how many of you used to count down the new year each December 31st with Dick Clark?

But wait, Jenni, what does Dick Clark have to do with anything? Are you SURE all your brain is still (mostly) intact?

Consider this. How many of you guys felt sorry for him after his stroke? How many of your friends (or maybe even you) said, “I just can’t watch him any more. I can’t stand seeing him this way.” Or something to that effect.

I will admit – it was hard. Not only did I feel bad that he was having such a hard time, I also never really had to see anything like that on TV before.

Not surprisingly, working so damn hard every day to regain my speech has given me a different perspective. It’s odd, because for years I have worked with various types of disabilities. So why didn’t I see it this way to begin with?

I should have appreciated the work it must have taken him just to get back on TV and do what he did. No, he wasn’t perfect as compared to the people we usually see on TV or movies. But at least he was trying to do something he was passionate about.

Which brings me to my point – what’s so wrong with being imperfect? With struggling? I think we all know we are (imperfect, that is). But what makes us all SO uncomfortable to see it? Why is our default to turn away? Or feel sorry? Or laugh?

And why is the media SO afraid to show us in our element? At our most vulnerable – making mistakes.

Hey, I can understand why I wouldn’t make a great reporter right now. No one has the hour it would take me to read the teleprompter at this point.

But, why do we perpetuate the idea that people have to be made up and glossed over? If we never see anyone making mistakes, what are we supposed to think? And how do you think that makes us (ME) feel – when I’m nervous to order a hot chocolate at Starbucks because I don’t know whether I can trust the words to come out right…

I don’t think I have unrealistic expectations, here. I don’t expect the media in general to make huge, sweeping changes right this second (though, that would be awesome). And yes, I do appreciate that disabilities and TBIs are getting more coverage now. However, I think that people still want these things in neat little packages.

They want the frightening, tragic tale of an accident. A courageous victim determined to surmount the odds. And a tidy ending that wraps up all the loose ends. It just doesn’t work like that. Recovery is frustrating, messy, difficult, and LONG.

We don’t get do-overs in our daily lives. I can practice the words “hot chocolate” fifty times a day, but I still might walk into that Starbucks counter and get stuck.

I hope that one day, I’ll recover 100 percent of what I lost. But I can say for sure that it won’t come in a gift-wrapped package (while I AM a horrible gift wrapper…it’s shameful, really).

And while I won’t relish the process, I will be grateful to have the chance…and though I can’t control “destiny,” I CAN make this apraxia my bitch.

Perfection.