The Time of the Chrysalis

As the third year anniversary of my brain injury has somehow come and gone, it has gotten me to reflect a bit more. This has been bigger than anything I've ever dealt with before. (And, as you know, I've been through a lot!) I feel frustration on a daily basis. Frustration over my ongoing limitations and lack of being able to do even a portion of what I once could do. Frustration over not feeling like I can remember even basic things. I've had to learn tricks and double up on my checklists just to function. And, even then, I don't always feel successful.

I know I've been fighting this injury. It has been hard for me to accept who I am now. Is this my new normal? I don't like the idea of having a permanent disability. I never thought I would end up in that category. I know three years isn't what I should consider permanent yet but it sure seems like a long time. I have had some improvements since those early days but no real Hallelujah-angels singing-miracle kind of moments. Even if they're small improvements, I hope to have more. It's been hard dealing with vertigo and balance issues, constant memory flubs, visual and auditory overload, fatigue and headaches on a daily basis when those things were NEVER an issue.

There has also been an immense financial frustration. Anyone who thinks you can readily survive without a regular paycheck is highly mistaken. And, what's supposed to be in place to help is also greatly lacking. Who needs extra financial struggles when they are going through life-altering medical issues? No one. Oh, and have your regular medical checkup options taken away? No worries there, huh?

I try not to complain and most people wouldn't know by looking at me that there is anything “wrong” with me. Brain injury is one of those “invisible” issues like Lyme, Chronic Fatigue and even Cancer. The, “But you look fine,” attitude still plagues me and those like me.

If I do too much and don't pace myself, I pay for it for days afterwards. There is no “pushing through it.” Things like shopping are usually a race-like event because time spent under fluorescent lights is exhausting and headache inducing (more like increasing because I always have a headache). And, no, sunglasses do not help to take the flicker away that I see from the lights, nor do they help with the overload of stimulus all around me. Then, there's the trying to get my mind to make decisions. Just looking for a product on a shelf can be absolutely overwhelming with the flickering and everything else going on. Then add in, trying to hurry.

The hardest part of this brain injury, I know, is the pressure I put on myself. The pressure to still be who I was and do what I could. I am lucky that I have a great support system of friends and family and a loving partner who watches out for me and does all the things that I can't do (despite her just finishing treatments for Stage IV cervical cancer!)

I had a little thought the other day that maybe I'm like a butterfly? Well, the life I had before the brain injury was my caterpillar stage. I was busy growing, exploring, experiencing life with a super high activity level. Non-stop hunger for living go go go. Cramming as much into every day that I possibly could. And, like a caterpillar, I even shed my skin a few times to become the adult I thought I was.

Now, if I continue with that same metaphor, I'm currently in my chrysalis stage. It's a time of great stillness (like, 35 pounds of extra stillness...but I'm working on that the best I can). To be able to cocoon would normally seem like a glorious thing to an ordinary person, aka caterpillar. Just like a vacation, you might think. But, this has been a stage that I had no choice about making. I haven't even had normal thoughts inside my head since I entered this stage. It literally makes my brain hurt to choose words and to even think sometimes. Doing what one would think are simple things can put you in overload and physically exhaust you. Just tipping my head one too many times can bring on extra vertigo which then could lead to a migraine. And, that is never fun.

You'd think it would be a great time to learn an instrument or even a new language. Learning new things feels next to impossible with the memory issues at hand. Plus, the extra sounds of an instrument can be too much on my head. It took over a year before I could listen to music and even that is without other distractions on a “good head day.” I miss going out to hear all my friends who play in bands or cranking the music on a sunny day while driving to nowhere in particular. Even trying to read has been quite the experience. Reading. Re-reading. Re-reading some more. Not remembering characters or what is going on in a book from day to day isn't exactly enjoyable. Forget about trying to write another book with those challenges!

So, as you can also probably tell, trying to stay the happy, upbeat me is also challenging. I try to find gratitude in every day; be thankful for the little things. Many of my friends with brain injuries benefit from medications to help with that. After trying dozens, I've found that they all have the opposite effect on me. And, that's never a good thing.

I'm hoping this 'restful' pupa/chrysalis stage is just that. A period of real brain healing. A period where I become more appreciative of what human beings can and cannot do. A period of realizing the fragility of our brains and life in general and the importance of concussion awareness in sports (and the workplace). A period of realizing what true patience is. A period of figuring out what I can still do to continue on my goal of making a difference in the world during this lifetime. A period with a definitive end to it would also be nice...

And, when all that is ready to happen, I hopefully will emerge into the new and improved butterfly version of me. It may be a version of me that is different than my former self and I will have to accept that I'm not a caterpillar anymore. I'll finally have a set of wings and I'll fly.

www.barbarabeige.com

Making a Fashion Statement with Medical Tape

“Mom, your glasses don’t match your leather jacket,” says Little One.

“Thank you, honey. They really don’t match anything.”

Remember how I wrote about how everyone thought I looked fine? (Read about that here). Well, now, thanks to a Neuro-Opthamologist, I look like a certified goober. With my new glasses, it looks like there is actually something wrong with me.

Let me explain. I’m now wearing plain glasses with strips of medical tape running vertically by the nose piece. Stylish, huh? The tape is supposed to get a few parts of my brain that have to do with vision, to actually talk with each other. I guess my midline vision and my peripheral vision aren’t working together.

Snazzy, huh? How do you supposed they'd pair with a little black dress?

Picture if everything you looked at was constantly jumping around. So minutely that you don’t notice it (well, sometimes you do), but your brain notices it by scrambling your head and balance. The doctor told me that since I was in such good physical shape when I had the head injury, that I’ve been able to compensate quite well. Well, better than others perhaps, but not perfectly.

I can’t really see the tape while I’m wearing the glasses, but others can’t miss it. I can tell that people just stare. Some may say nothing while I’ve gotten other complete strangers asking about it. I even got a blunt, “What’s wrong with you?” The cashier followed up with a quick apology.

I can still see with them on, thank goodness.

Now, this can actually be a positive. Like, when I’m in the checkout line and I can’t remember the pin number for my debit card to save my life. Instead of staring blankly at the pin pad or guessing on several number combinations that sound vaguely familiar, I can point at my glasses and say, “Head injury. Can you run that as credit instead?”

I have some good friends who have tried to be positive about their comments to make me feel good.

“You can hardly even see the tape,” they say. But they saw it to tell me.

Or, “You look good in glasses.” While hinting that there are nicer frames available.

Or, “It looks like a new type of bifocal.” Uh huh. Not.

I had a really good friend say to me when she saw them for the first time, “What’s with the goggles?!” Because there is no hiding an elephant in the room. Thank goodness for true friends.

No matter what anyone thinks, I’m going to continue wearing them. And crossing my fingers that they work. It sure would be nice to have my balance back so I feel more sure-footed and perhaps can ride a bicycle again (or learn to surf). And, they are supposed to help with the constant headaches and nausea that accompany the swirling in my head.

Plus, if this works to the point where I don’t have to wear them anymore, I wouldn’t have to worry about trying to coordinate my outfits with medical tape, since obviously, nothing really matches it anyway.

@Ybbeige

www.barbarabeige.com

The Snow and My Brain

All these pictures were taken on one recent winter’s day.

I’m driving through this period in my life…my time with what I have to call “living with a brain injury.” Hi, my name is Barbara. And, I have a brain injury. Who woulda knew?

Almost ten months now. No other way to describe it. I’m trying to accept it. I even go to a brain injury support group. Wouldn't have guessed I'd ever be doing that either.

My life is very different. Trying to figure out where I'm going. At times, it feels heavy. There’s an amount of grief involved.

It pulls…it weighs…

I know this is not who I was…it’s not who I want to be. Will I find a happy medium?

I try to use humor every day. Have to learn to make fun of myself even more than I do.

I still try to see the beauty in and around my life.

The lightness of my world.

And not dwell on the constant pain in my head or get wrapped up in the changes that have made me not feel like me. But, it’s hard.

I have to believe that time will heal my head. (Yes, B., more time. Be patient.)

And maybe someday, I can use what I’ve learned to help others? To give them hope that the cold and dark winter they think they always feel…will eventually warm and that their thoughts and bodies will once again…just flow.

That’s what I’m wishing for.

@Ybbeige

www.barbarabeige.com

A story written by the old me…of loss, love, hope and new love…Unexpectations.

Born to Surf: Just Haven’t Done It Yet

Even late in November, I’ve been eyeing the surfers off the coast of Maine…yes, they’re in wetsuits, but dang it, they’re surfing!

Do you ever feel like you’d be really good at something? Something you just keep Jonesin’ to do? Something you were born to do? My thing is surfing. Last year, I was going to try it with a friend but we just couldn’t coordinate our schedules with the waves then the drop in temps and my lack of a wet suit.

There hasn’t been a day in the last year and then some where I’ve seen big waves and haven’t just dreamed about riding them. I’ve been loving boogie boarding the last several years which I think is close. The bigger the waves, the better. Got the whole reading the ocean and paddling to catch the big ones down. Seems to me that surfing is just an extension of that…just need to stand up while catching that wave. And since I always do a push up off the board when I come in, I know I could get up on a longer board without a problem.

Summer of 2011. That's Ocean Hair, Baby!

It’s hard for me to explain the sheer joy that I feel when I’m in the water riding a wave…even if it has only been on a boogie board. The few times I went out to do that this summer were the only times when I haven’t felt my head pound from my head injury in May. 

Catching my breath between rides on an awesome boogie boarding day.

I know that I have some more healing to do before I can go surfing. There’s that whole balance thing that is kind of an issue. Seems rather necessary on a surf board. I keep walking on the beach. One of my neurologists said that it’s great to help with balance (and I suppose if I was to fall, it’s rather soft). Can’t beat walking on one of my favorite places in the world.

You can't tell me this wouldn't be fun?

Not sure how a girl from Upstate New York (the way upstate, not the just out of NYC upstate) can have such a love of the ocean. Maybe it’s my water sign (Cancer – the crab)? Maybe it was from summers spent playing in the big waves of Lake Ontario? Not sure exactly what it is, but the taste of the salt water on my lips and the way I feel so at home in the water just adds to the feeling I get when I think about surfing.

Yea. I'll be doing that soon.

And for now, it’s a goal for me. Not that I can rush the healing that my brain still needs to do, but it’s something I’m looking forward to. Really looking forward to. Even if I haven’t done it yet, I will. After all, I was born to surf.

Is there something you feel you were born to do? Are you doing it? Please share!

@Ybbeige

http://facebook.com/barbarabeige

www.barbarabeige.com

http://www.amazon.com/Unexpectations-Barbara-Beige/dp/1457504162

But, You Look Fine…

One of the hardest parts of having this head injury has been fighting what others say. I wrote about it once and I’m still dealing with it. Since day one, I’ve heard, “But, you look fine.” For the most part, yea, I look in the mirror and see that same person that had been there before (minus a little spark in my eyes). I like to joke and say that I can’t help being so adorable…I was born that way. I guess if I had ended up splitting my head open and having some sort of disfiguring injury, I might elicit a bit more sympathy.

I may look fine on the outside. Inside...not so much.

It’s hard for friends, and even family, to look at me and think that I’ve got something wrong going on. “You look fine,” they say. What no one sees is the extreme thought and energy that I need to use now to accomplish even the simplest of tasks. When I have to focus and concentrate on doing something, I end up absolutely exhausted. Like I ran a marathon. I’ll have to take a nap that may be longer than the amount of time it took to do the task. Seems stupid, I know, especially when I used to be the Queen of Multi-Tasking. The previous me would think it was stupid too. But, to those with post-concussive syndrome, or PCS, this is normal.

Being able to take a short walk a few times a week is a success. I’m trying to work my way up to a mile. For me, that seems crazy. Especially when it’s on relatively flat ground, too. Like the beach. I miss my days of hiking. Doing the 4,000+ footers in the White Mountains of New Hampshire. Going out on those trails that say they are only for the most experienced of hikers. The ones where if you fall in a crevice, you’ll need rope to climb out. The ones where if you fall, you have to do everything in your power to grab hold of a root or something to stop your sliding descent. The ones where you bring survival gear just because you never know what situation you’ll run into or what weather may blow in. Now, I walk a hundred feet or so and rest a few moments. You can’t tell me that isn’t frustrating.

This is a goal of mine...to be able to stand on top of a mountain again.

Admitting your limitations to yourself is hard. Knowing what you used to be capable of doing and comparing it to what you can do now is hard. I look like I should be able to walk any distance or even go for a run. I look like I should be able to work. I look like I could mow my own lawn. I look like I could go out in a noisy restaurant or bar and meet up with people. I look like I could be in a store for more than 40 minutes. I look like I could ride a bike. I look like I could vacuum my house without earplugs. I look like… I look like I could do a lot of things. But, right now still, I can’t.

A friend of mine, who is also a psychologist, has been a wonderful support in this whole, ‘But, you look fine’ thing. He has Lyme Disease. I’ll call him Jim. To the average person, Jim is a good-looking, normal guy. No spots, no bulls-eyes on his face. He’s smart and funny. He’s a normal Joe. Or, Jim. Because of the Lyme, he has fare-ups where he is absolutely exhausted, where his clothes feel like they’re made out of sandpaper, where he has excruciating headaches. But, he looks fine. People with cancer can also look fine, another friend pointed out. Ask them how fine they feel.

This isn’t a case of mind-over-matter either. It’s just a brain injury. A real, honest-to-goodness invisible injury that is just taking its own sweet time to heal. I know that I’m better off than a lot of people who have had concussions. And, I’m worse off than others. I’m thanking my lucky stars that I can still write and spell (though, I do actually mess that up often these days and as a writer and Boggle and Scrabble psycho, that’s tough). I can function on my own for most daily tasks. Thanks to all my friends who have helped me with the tasks I just can’t do. I can still drive. I can still laugh and smile, though I don’t always understand things like I used to. Especially if I wasn’t fully concentrating on what someone was saying.

So, if you see me, or someone else with a silent illness, give that person a little slack, or maybe a little help. Just because we may look fine, it doesn’t mean we really are.

Do you or someone you know “look fine” but aren’t and are going through a similar situation? Please share below.

@Ybbeige

http://facebook.com/barbarabeige

www.barbarabeige.com

http://www.amazon.com/Unexpectations-Barbara-Beige/dp/1457504162