Tuesday, November 27, 2007

A seizure and a dream that died...for today.

“NOTHING is worth that.”


That’s what my home care worker said once she learned the two parts of my boxing class. The problem is that while I still have muscles; I can’t access them; the connection doesn't work. So for the first 30 minutes of the class, I am so weak I struggle in every activity, and though I push myself the hardest, I just can’t reach the power in my muscles.

Then I start to sweat. I don’t know what chemical it is or if it is a chain reaction, maybe adrenaline, nor-adrenaline, nor-epinephrine, I don’t know but suddenly, my arms are twitching and so covered with spasms they blend together but I have full use of the muscles. I am strong again....for 40 more minutes, I will have the power of an athlete again.

My home care worker wanted to know why I didn’t spend even more time in that state. I told her that 1) I push myself to the point of exhaustion and 2) every minute I spend in that state costs me one hour of extreme pain.

“One MINUTE is one HOUR?”

I nodded.

“NOTHING is worth that!”

How do you explain what it is like, almost a year on, about being in a room where you are one of the top athletes again. Going someplace where the new women come to get tips from you. How do you describe the feeling when people line up to bout with you. Or when people joke with you; come up and start conversations with you. Outside of the gym I am not a person who is seen an asset, a person who would be cool to get to know.

But, last night in bed, at a 35 degree angle, my left rib cage wouldn’t expand. Then the inside muscles lining my ribs started to ripple and my entire body violently shook as if I was in extreme shock. My teeth were chattering and my legs were trembling in signs of severe hypothermia, even though my body was overheating. “Are you cold? Are you cold?” My home care worker asked. No. No. But when it finally ended, I was paralyzed, except where my skin rippled from over a dozen subcutaneous spasms. But at least, after 30 minutes, I could breathe without feeling like I was drowning. The home care worker talked to me about upping my pain medication dosage significantly. She said that one point of pain medication is to be able to sleep. I finally slept with pain killers, massive muscle relaxants and two sleep aids only to have the pain wake me three hours later, and three hours after that, and three hours after that.

I know in the constant pain and erratic swoops of consciousness today that I cannot continue boxing, at least in the present form. I know this may seem simple and obvious to you, but I’ve been grieving. Truth be, is I’ve been moody and blinking back tears. It’s not just the boxing. It is the boxing. I thought I could handle the pain but that…..bizarre seizure last night terrified both me and my home care worker; and she’s worked home, hospital and palliative care for 16 years. I know she is right and that we can’t risk something like that again.

But damn it, I was Elizabeth, back with a plan, fighting the fighting in literal and metaphor ways. And, my God, those glorious 35-40 minutes when I was high on adrenaline and full of power… I spend my week getting carried, pushed in my wheelchair and/or assisted everywhere. Do you get it? I had Full Muscle Power again. I would pay more if I could just go for a jog again, to have my wind in my hair as I stretch out my legs taking in the downhill with swooping strides. I'd pay it. I didn't have that, but what I had was close enough.

But it isn’t worth a stroke, or permanent paralysis. It isn’t worth agony which is stronger than the opiates I take. It isn't worth 36-40 hours of that to experience 35 minutes (Well……maybe? I mean "No!").

My impression was that not many readers were particularly in thrall at the idea of me boxing. But I was. So tonight I grieve for that particular dream. Then tomorrow, or maybe the day after, I start building a New Plan, a new dream. It seems a cowards way to stop just because of the pain, and the passing out and the being unable to move. But I guess it might be more important to be able to breathe, to sleep, to not have scary freaky seizures that go on and on than to prove some abstract point to myself about quitting (let me tell you from the memories of last night, being able to breathe is REALLY, REALLY important).

Damn. It was a really good dream too. It was MY dream.

26 comments:

Marla Fauchier Baltes said...

I am soooooo sorry that the boxing is not working out. It certainly is not for a lack of trying! I am amazed at how you are able to push beyond your illness and keep fighting. It is hard to let go of something we love and want to do so bad. I hope that you find something to replace your passion of boxing with.

Wendryn said...

I'm really sorry to hear that you have to give up boxing. It's good to be able to feel strong, valued and part of a community. Considering the alternatives, though, you're making the right decision. It still sucks.

alphabitch said...

It was a really good dream. Call me co-dependent, but I am grieving just a little here that you have to let it go. And my inner Pollyanna keeps hoping that there's something salvagable in there. You learned what happens when you exceed your limit, but is there something to be gained in going only partway there? I know, I know -- you're not a 'partway there' kind of gal, and it sounds like I'm suggesting you take your damn bronze medal already & go home, but that's not at all what I'm thinking.

There's a lot going on in your account. The exhiliration, the physical thrill of being an athlete and being in your body in that particular way -- this is a very big thing, esp. in the face of excruciating pain and an unpredictable body. Do you have to take it quite that far to feel any of that?

And the part about being seen is not to be dismissed.

Can you hang around the gym now & again and watch people and talk to them and give pointers and demonstrate form? Is there a way in which you help teach others? Because being that cool chick everyone wants to talk to (which you totally are in my book, but I'm in North Carolina and of little use in that regard) is an important thing. And sometimes your squirrel friends are busy elsewhere.

Sara said...

"Do you get it?"

Well of course I do. My pollyanna self thinks there might be a way to revive your dream, too, only more gradually, less start-at-the-toppish. But my pollyanna self is an ignorant ass and could be totally wrong about this, too.

Meanwhile, my pollyanna self would love to see you become a coach, maybe not boxing since you are still just learning yourself, but something. You know some shit. You would be cool for more people to get to know. Your presence among your fellow athletes -- 'cause yes, you are still an athlete; I certainly can't help but think of you as one, thinking that every day for you is an athletic event -- could only be beneficial. Or so it looks from here.

I will say that someone with a neurological condition does not intuitively seem like the best candidate for a sport that involves getting punched in the head. Still, it's something you greatly wanted to do -- and you did it! Girl, you did it! That alone is huge! And it is obvious how much it meant to you, so I grieve with you.

Meanwhile, my pollyanna applauds your "for now" language and continues to hope for great things for you, including other dreams that come true.

elizabeth said...

You're a warrior. Boxing or not.

cheryl g. said...

Grieving over the loss of those moments when you are once again the strong, athlete who is in charge of your body is very normal.

I do want to point out that you are still the strong athlete and a cool chick regardless of others perceptions or what your body is doing.

I think so, the other posters here think so, and Fiona, the debutante squirrel thinks so... (her brother Psycho agrees but would never be caught saying it out loud).

Elizabeth McClung said...

Well, I was really hoping someone had heard of or experienced a siezure like I had; drowning sensation followed by bodying acting as if you have hypothermia? Anyone? Teeth chattering was the freakiest.

Marla: Well, if I can find a horse, I have been thinking about jousting - I mean, I only need ONE arm then. Haha, I was trying to think of something MORE dangerous than boxing. It just sounds way better to say "I do wheelchair boxing" than, "I go to the gym and do sit-ups." drat.

Wendryn: I am a weeble wobble (remember the commercial) - I weeble and I wobble but I don't fall down (well I do, but not so much that you notice and return me for a refund). Yeah, the alternatives. I mean I could do the whole thing on some higher pain dose of morphine or the like but it would seem to defeat the purpose.

Alphabitch: "You learned what happens when you exceed your limit" - I have to say you are a bit of an optimist there, I serious doubt I have learned, I am just like the dog who gets smacked with the newspaper, all it means is I won't do the EXACT same thing again....till I think my owner isn't watching.

" it sounds like I'm suggesting you take your damn bronze medal already.."- - I think the name of the blog makes it pretty clear how I feel about "bronze metal mentality" - my motto, try big, lose big (win occassionally and no one is more surprised than I).

"Do you have to take it quite that far to feel any of that?" - errrr, if I was someone else the answer might be, "No" but the problem is, once I get the juice flowing, I become, well, more ME. Like last week, the coach was "You've worked hard enough, why not take these next 15 minutes off." Me: "No!" Coach Ian talking to Linda: "Why does she always say that?"

Linda has suggested coming half an hour later so that my time is limited and even if I decide "I am superwoman!" there is already a timelimit built in.

I do coach but they already have three coaches (all guys), but I don't think they are going to let me come just to give pointers. Besides, I am more of a "Come on, give me a hook - good job!" kind of person - so um, my style is more thier hands on my head.

Sara: But...but...abusing my body till it miraculously rebounds has always worked before....why won't it work now. Because I'm ill. DARN that being ill, it ruins EVERYTHING!

"I will say that someone with a neurological condition does not intuitively seem like the best candidate for a sport that involves getting punched in the head." - Kinda seemed like a no-loss scenerio to me, hit the one place that is already malfunctioning! But thanks, I need to return to my "brooding lair" and come up with a new plan. I do have to hope that this doesn't mean I have to give up a new sport EVERY year until like in two years I am down to playing cards.

Elizabeth: Yeah, what happens when the warrior is all used up? Is this the part where I find an ice floe - no wait, I remember, I read this book, I need to find a whaling ship and a harpoon and a crew that might be convinced to do something entirely insane....

Katrin said...

"drowning sensation followed by bodying acting as if you have hypothermia?"

I've had that happen, I was in a indoor horse arena during a dog agility class, but I don't know that it was as severe as yours and don't know that I would remotely call it a seizure in my case. Regardless it was really not fun, and stuck me in the ER where the idiotic doc told me I was having a panic attack, not listening when I explained that I'd had various rather severe panic attacks for many, many years and this sure as hell wasn't one!

Katrin said...

And I totally get the feeling of going at things 110% even when your body decides it doesn't want to work. And then when you do it anyway, your body later comes back and says "Now I'll show you! This is what you get!" And throws you into such agony and level of hell. It totally sucks when you've got to make such choices. I mean really, who should ever have to decide like this?!

Elizabeth McClung said...

Cheryl g.: Well, the sad part was I had to WORK to convince Psycho I was the more athletic of the two of us. I said to Linda; "If I make a fight date, for an exhibition, then maybe it would be worth it." She gave me a very intense look and my idea was shot down in flames. Hehe thanks for the encouragement.

Fiona: Yeah, I've noticed that "Panic Attack" is medico speak for "Hey, if I don't know what is going on then it isn't MY problem (like a medico would ever admit, "I don't know."), it is YOUR problem. Whatever it was, it was so bad, I WANTED someone to stick a big needle into my chest (like they seem to do on all those medical shows to solve problems) to make it stop - which if you know my history of needles is saying something; that I finally found something more terrifying than needles.

Tui said...

Boxing or not, you're one hell of a fighter!

I am curious to read about your next plans, though, I know they'll be good.

Lisa Harney said...

Sympathies!

I liked your boxing stories. No disapproval from me.

I have no idea what that seizure sounds like. I tried looking around on the net. I haven't figured out the right words to describe it, since I keep getting waterboarding hits.

Anyway, it was a really good dream as Alphabitch said. I hope you can find an equally good dream to fill the place it held.

JackP said...

You have my sympathy. I understand what it is to lose something that you value.

Equally however, understand that to the majority of your readers, you are able to communicate your voice to us. Your gripes, grumbles, swears, whatever.

To us, that's our insight into you. And to us you are exactly the same Elizabeth. It's your personality, your voice that matters to us.

And by God (or other deity of your choice) you ain't lost that.

So just keep on keeping on.

Sober @ Sundown said...

I'm confident that you will find another sport to pursue. We all have to change our plans once in a while. If it were my choice, I would have you try out for badminton. It's a rather low impact sport and you might not suffer from the exertion that boxing brings.

em said...

Oh Elizabeth. I feel so sad after reading that. I'm usually a wait let's figure out what we can do Now sort of person, but I'm learning to slow down and grieve the vision. I know you will come up with another plan, but I'm really, really sad that this one didn't work. You wrote so beautifully about that half hour of feeling like a warrior again.

Hugs from me to you.

anabel said...

Man I know that feeling of competence and feeling connected and warrior-like. I'm really sad that this didn't work out they way you'd hoped.

Elizabeth McClung said...

Ahhhhh - I posted comments to everyone and got burned - okay, that sucks. Here I go again.

Katrin: Sorry I used the wrong name. Fiona was a squirrel I had a crush on and fell in love with this weekend (I know it's against the bible). I don't know why the name switched but it really is sort of a compliment, honest.

And yeah if my body was a good listener then I wouldn't be disabled - it does not obey me: BAD BODY!

Tui: Thanks, I'm kind of curious with what I might come up with too!

Lisa: Yeah, I would like to know what that was, particularly the hypothermia bit. I want a cool dream, see, I am vain and so I want to end up doing something that no one in a wheelchair would dream of doing, like Wheelchair Parkour!

Elizabeth McClung said...

JackP: Thanks, and I will continue to dish out my voice and my narration in regular intervals - though I am trying to keep the moaning, whining, whittering, gripes and grumbles down to say 50% of my posts.

Sober: How psychic of you, it turns out that the only other sport that someone in a wheelchair has done at the Y is....badminton. I however want to play basketball against the able bodied - except there are only guys who play (what is with that - is this 19th century basketball or something?)

Em: Thanks - I find if I don't wait a bit then my immediate plan tends to be "Oh wait, I show you, I'll SHOW ALL OF THEM!" sort of plan which isn't really what I need. Thanks for the comment on the writing, it really is incredibly painful to even think for a moment that the feeling of being that type of level or group of athlete might not be available to me again.

Anabel: well, yeah, it suck - big time, but I am sure I will find ANOTHER windmill to charge at - there will always be another plan because I always get back up (whether that is smart or not).

Lisa Harney said...

Okay, I was digging around and the kind of seizure I could find that is associated with chills is a febrile seizure, which children usually have, and are usually marked by convulsions. I don't know enough to say, but what you're describing isn't that far off - except for you not being six years old. Wiki article here.

The other thing I found is that asphyxia can be caused by seizures as well, but I couldn't narrow anything down with regards to asphyxia and seizures, or respiratory muscle paralysis. In other words, I'm pretty much at sea with this one.

And of course, since I am not a trained medical professional, nothing I say has any diagnostic meaning, and your doctor will probably try to tell you that you can't have febrile seizures because children have them, even though you felt hypothermic and had a fever while having convulsions. Most people who are not children and don't have febrile seizures don't have any kind of MSA either.

river said...

I dont usually comment, but I like your blog. Have you heard about using rituximab to treat autoimmune disorders? It might be worth looking into.

lilwatchergirl said...

Your dream inspired me. I have a Plan of my own now, and dammit, it will include pushing myself beyond what I expect to be able to do. Probably not physically, though :D

I'm sorry to hear that this particular Plan didn't work out. I look forward to hearing about your next one.

Elizabeth McClung said...

Lisa: thanks for looking, the febrile seizure looks pretty similar; my working theory now is the "cluster theory" which according to an MS nurse, people with MS when the blood gets hot tend to have clusters of blockages so their speech slurs and movement degenerates.

I think that, yes, maybe I was fevered and some sort of autonomic cluster occured, I don't know - how I could lie there unable to move while my care worker could see muscles spasming under my skin - dunno - all I remember is thinking, "When I talk to my GP, he will want to know exactly where it hurts" which turned out to be the left rib hinge or the spacing between the left ribs, that is where most of the pain was coming from. Thanks for your time.

River: I haven't but I am looking it up now, I think I will need more bloodwork before my doctor will consider this as the side effects are very drastic (like 70-80% immune toxicity if you don't have the right lymphoma?) - I am looking into LDN which seems to help autoimmune neuro brain oriented patients.

Lilwatchergirl: Yeah, go for the plan, I will have my New and Improved Plan soon and then we will BOTH have a plan.

tornwordo said...

Does it bother you if I find you a total inspiration?

Cooper said...

I could say something moronic like "What does your doctor say" but knowing your doctor experience....

you gotta find something to keep going...I mean you've got guns woman!!!! Just look at those arms...

rachelcreative said...

The price of your muscle freedom sucks. I understand the desire to have that.

I hope you can find the choice not to risk severe seizure and paraylsis as empowering as your choice to box. Because both are truly gutsy choices Elizabeth.

Elizabeth McClung said...

Tornwordo: No, I'd just to know for what, I mean if you are going to be, say an erotic dancer on youtube becuase I inspired you - do I want credit, YES!

Cooper: Actually my doctor just wants me to have fans on me for the heat intolerance and try to quantify the BP, heartrate stuff - I think he thought, well, I deal with mentally ill people all the time and she only seems to want to hurt herself....

Errr....guns are fists? Jutting breasts? Savage blows to the head?

RachelCreative: Brain totally agrees with you - heart, every time I see a sports film, does not - they don't make films about people "heroicly deciding to work from recliner" - I wish they did though.