Post Marathon + Vacation

Caroline ran the marathon, and I couldn’t be more proud. She is continuously blogging about it on her site, so please go visit & see how the marathon felt for the runner.

For the viewer, at home… It felt terrifying, and exciting, and wonderful all at once. I sat using my iPhone app, constantly hitting refresh. I watched where she was on the map TRYING to not feel guilty about being in Virginia while she was in NYC for me. It’s like, in some ways, we are connected. I watched how fast she ran, when she passed certain landmarks and I cheered, crying a lot, as she crossed the finish line. My best friend had done it. She has run one of the most prestigious marathons in the world, and she did it without accident or injury. She is an amazing woman.

After the marathon, Caroline and her boyfriend Adam, came to my town to visit and see what there is to be seen. My car, for the first time in over 6 months, got some exercise. After a couple of days in my town, mostly eating with very little site seeing, we went to DC to see the big city.

Anyone who knows me, and has gone site seeing with me in one of the “big cities” that I’ve lived in, or spent time in, knows that I can show you a city in less than 2 days, if necessary. DC was no exception. We didn’t hit any museums as to be honest that would have been impossible, but we did hit the monuments and I did give a brief history lesson (as best I could) at each of them. I was a walking encyclopedia and I was loving it.

After wandering up and down the Mall, we went to the National Air & Space Museum to catch a quick bite at the McDonalds and so they could wander around some more. At this point I was not feeling myself. My thoughts kept fluttering around to other places, and honestly I felt like I was in another world myself. As we wandered, I felt worse and worse. It got to the point I finally told Caroline to go find Adam and I’d wander the gift shop. I neither wanted to cause alarm, nor ruin their experience. Caroline, after what felt like days, came back with Adam and mentioned something and I know I said I needed to go back to the hotel. They were ready to walk, and I said I’d take a cab. At this point, I had lost everything. I was no longer able to keep my brain together.

To be perfectly honest, I don’t know how it all worked out. I don’t know if I TOLD Adam and Caroline to walk and enjoy themselves, or if they sent me on my way. I don’t even remember getting in the cab & giving directions. I don’t remember paying for the cab, I don’t remember getting to the hotel room. I remember nothing until an hour or so later when Caroline came back in. I was sound asleep, face down on the bed and I heard movement in the room. I felt like the life had been sucked out of me and there was nothing left but to sleep what was left of my life in that bed. A short time later I said to Caroline that I couldn’t move my legs. I’ve had this happen before, lovely atonic seizures in my legs. I’ve fallen down stairs, fallen out of bed, fallen goodness knows where else, but in my adult life it has never actually happened with someone else right there.

Caroline comes over and starts prodding at them, picking them up and dropping them. I think she felt to some degree I was joking around after all of the walking we had done. At this point I had started crying. This seizure is the scariest of my seizures anymore. It’s like being a paraplegic but knowing that’s all wrong. That your legs are there and you SHOULD be able to move. Knowing what should  happen, and yet having the opposite happen is a terrible thing.

I have trouble connecting the dots for that evening. My memory is sketchy at best. A bit like going out on a bender and things being remembered only AFTER someone tells you about it. If only I really did have a bender, at least I’d be able to explain it easily.

Now, however, the vacation is over. The holidays are beginning and off we go to another adventure.

Driving

I read a post recently that got me thinking about driving, and so here I am blogging about it… Go figure.

Remember the excitement of getting your learners permit? Remember the thrill of getting behind the wheel for the very first time? The freedom, the amazing feeling of just being able to get away whenever you wanted? Now imagine that being torn out of your hands because of something you can’t control.

I live in a small city, with “decent” public transportation. It doesn’t run on Sundays and it only hits a stop once an hour. To get to another line you have to go downtown or learn the ins and outs of the system. It is not easy. When it first clicked with me that I could no longer drive — when I stopped having simple partials before my complex partials — I cried. Everything I’d worked so hard to get was now gone. I had lost the excitement, I had lost the thrill. I had lost my freedom.

That’s not to say I can’t get around. I’ve learned the bus system – ish… I’ve gotten a bike. I barter with my neighbors for rides when I need to do major grocery shopping. I get around. I just can’t do it when I want. My life now revolves around other people and the schedule they desire. I am dependent.

I think that’s one of the hardest parts of this thing… This disorder, disease, malfunction takes away my freedom. It takes away what I dreamed of having as a child.

My car still sits in front of my house, parked on the street waiting for its driver to come back to it. Waiting to be driven down country lanes and feel the rush of life passing it by (well, it would if it really have feelings). I refuse to sell it as I hope and pray that one day I’ll be able to use it again. I’m unwilling to give it up. It is my last bastion of independence, the last string I’m able to cut.

Exciting!!

I’m so excited. My best friend is going to be here shortly. I have prepared lasagna for dinner (which will be a late dinner, definitely), I have cleaned… ish… my house. I even managed to get my car inspected so Caroline and Adam will be able to go where they please, when they please (the tags expired in August. Whoops). I have made plans.

The thing is, no matter how many plans you make, how excited you get as someone with epilepsy your life is completely unpredictable. As of this second I’m fine. In 20 minutes my life could flip upside-down and my excitement may turn to fear that I’ve ruined my best friend’s holiday as I’ll be too tired to move.

I don’t think its fair that this is how I have to think. I don’t think its fair that I have to depend on others to get the basics in my life accomplished. It isn’t.  I try to stay positive, I try to not worry about the simple things. My best friend will be my best friend regardless of how our time together goes. She’ll understand, she always has, not just about my seizures, but about me as a friend.

 

The day after

I’m not going to lie… I cried a lot yesterday. As I stalked my best friend on my iPhone as she ran the race, watching her every meeting point, I cried. I jumped up and cheered as she crossed the finish line. I wish I was more stable. I wish I could be there for her. I wish, I wish, I wish. But as that old saying goes “wish in one hand, shit in the other, see which gets filled first”, wishing doesn’t change much.

Caroline understands, and she’s always been supportive. I just feel like an awful friend, not being there screaming at her & for her. Maybe next time I’ll bring a vuvuzela and tick off everyone.

So, the reality is, how many of you have friends that will run (literally) one mile for you?  I’ve got a best friend that will fly across oceans and run 26 miles for me.  Pretty much, I’ve got the best-est best friend ever.

Today is a Good Day

Today is a good day. It’s the day that Caroline runs the New York Marathon. It’s the day that she’s been working for since January. It’s a day we thought was so far away when it was initially booked. Yet here we are, waiting for the race to officially start.

Today is a combination of happy and sad for me. I’m so happy that Caroline is in the US, running a marathon, doing what she does best, supporting her friends and running. Yet I’m sad because I can’t be there cheering her on. I suppose this is how she feels with me, I suppose this is why she’s running the marathon. She can’t be here to support me when I need it, so she’s supporting my organization. I only wish she had an organization that I could support like she is.  Still, I’m happy. I see Caroline on Tuesday, and we’ll get to do some touristy things in Roanoke (are there touristy things in Roanoke??). We’ll get to chat and be close. It’ll be like our friendship is supposed to be.

The auction has sold, we raised $172 for the Epilepsy Foundation, and our cause specifically. As soon as it actually posts it should bring us up quite a bit. The person who bought it is a coworker of mine, and despite our constant bickering, he’s a pretty decent guy.

So all in all, I’m a happy girl. Who can complain about having friends and family who are willing to go to the ends of the Earth for me. Seriously, My life… not so bad after all.

So, I really think that YOU, my dearest reader, should remember to donate. You can donate here, and show your support to not only me, but to my best friend who is willing to go to the ends of the Earth to support me.

The Vagus Nerve Stimulator

The first Monday of every month, I go to a support group. This support group has only happened twice, but last night we had two speakers, one was the sales person/nurse for the VNS manufacturer, and the other was a local epileptologist. I had NO idea we had one in the area, last I looked there weren’t any. We talked a bit about what was going on in our lives, and then the VNS speaker stood before us and presented. She handed us VNS implants to hold, to look at. I, personally, am unlikely to get one of these devices. I’m a bit of a VNS-a-phobe if there is such a thing. But to hold a device that could change someone’s life in your hands? It’s a bit like holding the red button to start a nuclear war.

This little device is a little over the size of a quarter with one big wire coming out of it. As I rolled it around in my hands and looked at the electrodes that wrap around the Vagus nerve, I thought to myself If I knew this could change everything tomorrow, I’d be in the operating room now. The problem is, I’ve heard some horror stories about the VNS, and even after hearing the success stories it’s hard to get those tear jerking memories out of my head.

The VNS is now being used to treat depression (although no insurance company will pay for it, despite the limited side affects and how well it works). It’s come a long way since it was the size of what felt like a dinner plate.

I guess my point is, treatment is evolving, changing. I want to be someone who helps people get better. I want to be someone who changes at least one person’s world.

Please remember to donate. The race is on Sunday and we need to get closer to our goal! Even if it’s $1, please donate!

http://bit.ly/eresearch

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Life lately has been busy. I’ve been running around like a chicken with my head cut off trying to get the auction up and running (it’s up now, btw). Between that, and work extra curricular activities I’ve become a busy little girl. I’m always tired, like a walking zombie more than a human being. We’ve talked about raising my meds this weekend, but I don’t know if I’ll manage to do it. I don’t know if I can handle more benzos in my system. I already drool on my pillow every night, and I generally start the pass out process around 6pm. I try.. not to be such a stick in the mud, but there’s not much I can do for it.

I’ve apparently had seizures that I didn’t know I was having. Yesterday, a co-worker apparently came over and poked me in the back while I was working. She wanted my attention for something. I didn’t react, didn’t move. She hung around and said my name a few times until I was back to the real world. I don’t remember any of it. I have no recall of being “out of it” so who knows how many seizures I’ve had that I *don’t* know about. Makes me wonder if my seizure diary is really worth it.

Caroline’s getting ready for her flight over. The race is really soon. She’s started a new job, and I know she’s stressed. I wish I could be there for her.

I’m excited to see my best friend in just a few days really. I wish NYC was really an option, but between money, meds, and medical histories it’s probably best to stay within range of my doctors here, or Johns Hopkins itself.

Anyway, this is more of a diary entry than a real “blog”. I really should work on more things to say.

Dating Hell

So, I used to like to date. I used to go on a lot of bad dates to give my friends something to smile about, laugh about, and sometimes I met some nice guys. Dating was like a hobby of mine. Don’t get me wrong I always offered to pay my share, was nearly always refused.  I never took advantage of the guy in terms of where we stood. I dated because I wanted to meet Mr Right.

Well now, since “the Epilepsy” came back, it’s a bit different. I can’t drive so getting to the dates is a bit difficult (although I must admit, public transport/bikes = hot in my nice date outfits). Giving a stranger my address = bad mojo, so what to do, what to do? Bottom line, I haven’t dated. I’m becoming a bit of a recluse and my dog is my only full time company.

There are so many issues and hardships when it comes to dating when you have a life long disability. When to tell them, how to tell them, and how do you explain it to them? How do you throw on someone you like that “oh by the way, I have a disability that makes it so I’m dependent upon others, and one day I may be without a part of my brain. When do you spring that on them? The first date? Oh, by the way… I have seizures. When you find out you really like them, and you want it to continue? Which at that point your heart is invested and it could be harder on you?

The other thing that frightens me about the whole thing… I may never get to have children. I’ve gone back and forth about whether or not I want to be a mother and I’ve come to the conclusion that I do. So then what? Pregnancy and the hormones can increase the risk of seizures, which means I could kill my unborn baby just by being me. I feel like I’m disappointing my family (I know I’m not, but sometimes it feels that way) by even thinking that way.

So what to do? I’m not saying I’ll never find Mr. Right. I’m just saying the minefield in front of me is a scary one. It’s one that a lot of epileptics have to walk through.  There’s no right or wrong answer (at least in my opinion).

The Bad Days.

Some days are good, some days are bad. The good days are wonderful. You get to enjoy time with your friends, smile, laugh and know that it’ll be OK. The bad days you really feel the urge to just sleep the world away, and you pray that maybe tomorrow will be a good day.

Yesterday, well yesterday was a bad day. I had gotten home, and then… Well I don’t remember a lot of the evening. I ate, and then the seizures started rolling in. I said something on Twitter about it. My mom says she called. I slept. I slept a lot. 11pm rolls around and I decide to make my way up to bed. My legs were wobbly, I was wandering around like a staggering drunk.

To be honest, at some point I should have gone to the ER. I should have let them look at me. Make sure I wasn’t going brain dead or something stupid. Only problem with that is, they don’t know what to do with me. I can’t take Ativan anymore, their weapon of choice… So what? They stare at me while I feel miserable, and I feel even more miserable because I’m in an ER with blood taken and needles everywhere.

Knowing there’s nothing that they can do. Knowing that the best they can offer is next to nothing. That’s a kind of nightmare no one deserves. I mean, most people when they get sick they can go to a doctor, be given a pill and go home. They may not feel better immediately, but a few days they could. Even cancer patients have treatments. But there’s not much they can do with me. Not much other than use me as a pin cushion.

Today, I should stay in bed. I should watch some Netflix & sleep. But I refuse to give up my day because yesterday was a bad day. I refuse to let that happen. Today could be a good day, if I give it a chance.

Am I an epileptic, or a person with epilepsy?

Once, while online, I was speaking to a woman who also had epilepsy and I referred to myself as an epileptic. I stated “I’m an epileptic, I have been my whole life.”

“WHAT?!” she cried (if you can call it crying in a digital world)

“I’m an epileptic.”

“No! You’re a person with epilepsy. A. Person. With. Epilepsy.”

I’m not going to say how long this went back and forth. To be honest, it doesn’t make me look like that good of a person, and it’s all a bit ridiculous. However, it does bring up the question, are you an epileptic, or a person with epilepsy? If I’m honest, I think a “person with epilepsy” sounds like someone that has leprosy. Someone who is miserable and isolated. Someone who should be put a part from a normal person. An epileptic is just another adjective. It’s just one more thing that makes me a whole. Like if I had diabetes, I’d be called a diabetic. These are all in the same realm. I wish I didn’t have epilepsy, but I’m proud to be an Epileptic. Being an Epileptic means I’m an advocate, I’m a supporter, I’m strong, I’m educated (because lord knows it takes a lot to know even the slightest bit about epilepsy), I’m supported by those like me, and undersupported by those researching. Being an epileptic says so much more than being a person with epilepsy.

I am proud to be an epileptic. I’m an epileptic, a traveler, a volunteer, a student, a friend, a relative, lover, a fighter, a reader, a writer, a knitter, a biker. I am so many things. To call myself a person with epilepsy seems to make it so much more. It’s like the handbag I’m always carrying around. It’s my luggage. I’d rather lose my luggage at the airport and go to the beach.

What do you think?

As always, please donate to our cause. My best friend is running a marathon to make arguments about these sorts of things null & void. To properly treat Epilepsy would be a dream come true for me and many others. Help make that dream come true and skip your latte. Give to our fund.

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