Friday, June 10, 2011

Sleeping life away

Linda hand-fed me yesterday when I woke at 10:30 pm. Our plans of exercise, or an evening out, like all the plans this week put on hold. I was too weak to hold up my head, or use my arms. It was my first meal in many days. I was, after two hours, strong enough to be up for a few hours.

Monday night I thought that this was going to be the best summer since 2008. The edema was going away and I was wheeling again, I had worked up a schedule in my head on the amount of practice wheeling and then my first 5K in years, I guess. Then up to a 10K.

I went to sleep thinking I would wake up a few hours later, but I woke up 12 hours later, the Beacon care worker for the day having not come Friday either. A week gone by but I have just a few hours experienced in it, otherwise paralyzed or sleeping.

They talk about the weakness and sleep needed toward the end. Is that it, or is it from the dehydration, the lack of food, a couple meals for the whole week, and no IV. Will I wake tomorrow to find I have slept another 15 hours, and have 6 hours up or back to having my 12 hours awake each day? The only way is to lie down and take that chance.

Sometimes you can do everything ‘right’ and still end up getting weaker and weaker. If you have seen Porco Rosso’s the film by Ghibli (subtitles recommended!!, UK version best), you will know what ‘A pig’s gotta fly’. It means that for some, you are what you are regardless of how the world spins. And you know it because you carry the weight of it. It feels like a burden when I am immobile, sometimes it is your curse, but when you fly it is what makes you complete. To compete, without reserve, is how I fly.

It was good that I went from Epee Fencing to Wheelchair boxing. I was used to getting hit, I didn't know that I needed it, wanted the challenge of high speed chess of the mind and body with a penalty of a bop to the nose or lips. It is who I am.

My parents didn’t come to my basketball games, even though I played on three teams at the same time. “You’re not from our family line,” they said to me when I woke before them every day to practice for an hour by myself in the gym. “There are no athletes in our family tree.” I was a stray dog. Good at nothing but still going back for more.

After the ball of my knee ground into inside kneecaps, and I couldn’t walk, or sit, and woke from pain every night. Marfan’s made my body hurt, as the muscles were slowly stretched apart for every day and every minute from puberty until now. That’s just the way I grew. Too tall, one side longer than the other. And after the knee operations, the doctors said, “Be very, very careful because we cut away so much muscle, if anything goes wrong, there isn’t enough to repair.” So I did downhill skiing and ran, and ran, in the morning, in the middle of the night around and around the Rose Bowl (3 mile course). “Don’t know where she gets it from…” my mother said, and my father shook his head at my ‘waste’. I hated myself because what I had been taught, and the thoughts banging around inside of me meant that the love, attraction, and how it made me feel, knowing myself as well was what my parents, my school, my community, and my God hated about me most of all. When I felt that way I ran. In 110 degree heat I ran.

A 10K used to be my daily ‘slow’ warm up before the later run of 18K or 25K or a sprint of 5K or 8K. I ran, went to uni, worked, ran, slept, got up in the middle of the night and ran and then slept the rest. Every day. I had no significant talent. I was going for ‘qualifying’ times.

I have run tens of thousands of laps, I have cycled thousands of miles in triathalon training. “What is possible?” Is all I wanted to know. “What IS possible?”

I found that in trying to find out, I ran into no shortage of people who told me what was ‘impossible’. Strange people who delight in other's failure. I also learned I am the best coach for understanding my body movement. The US 10K champion also had a leg 1.5 inches shorter than the other. I am used to biking dozens of miles to get to basketball games, playing then biking home. I never quit, I never failed to show.

I probably am equating sports for something, and I really don’t care, all I know is that I will always be the person striving to gain the highest endurance and putting out the highest personal energy in any training or sports room. I plan, I practice, I try. If I fail or not is never as important to me as being there, as trying.

I will fly again. This girl has got to fly.


wendryn said...

"If I fail or not is never as important to me as being there, as trying."

You have always tried your best, and you are still doing that. I hope that your strength comes back a bit. *hugs*

annette2 said...

You are an inspiring woman Beth. I think you have outdone your bloodline with your flood of talent and determination. They sound wilfully blind to your achievements.

You can write aboiut anything and make it interesting and meaningful. You and Linda are a good team. I just wish everything else would work as it should.

All the best and I hope you have good food, good sleep and more strength


SharonMV said...

I believe you will fly, Beth. You do not belong to your parents bloodline - in strength of spirit, you have outdone them, in your compassion and willingness to care & give to other people, you are far from them. You give everything where they seem incapable of giving anything. Your athletic prowess & dedication are just a part of your character and being.

The last few days you've endured without proper care, without water & food would cause a setback to anyone with serious illness. I hope you will gain more strength soon & can continue your wheeling & training.


Noisyworld said...

Blood is thicker than water and your family seems to be thicker than most lol
I can't understand how they don't appreciate how much effort you put into getting as much from life as absolutely possible- weird :/

Raccoon said...

I think we all have an opinion of your birth parents and your brother. This isn't doing anything to change that opinion.

Part of your "over" sleeping might be some depression.

But, you were able to eat. This is good.

Baba Yaga said...

Your parents sound most terrifically frightened (I typoed 'frightening' - that fits, too!), erecting barriers between themselves and anything not known and comfortable, and spurning it, lest they be spurned or overmatched by it.

It's frustrating when the body declines to do what it seems it should be able - and hope is a very equivocal companion, isn't it? In your position, that can only be magnified and multiplied - every change could be significant, and I can only imagine how wearing that is... I hope that food and rest will enable you to recoup, and wheel a bit: lack of food and dehydration (most especially) are hard enough on a healthy body, after all.

Is there anything we can do to make sure you get food, regardless of un-care workers? Is having easy things available mostly enough, or are you needing to be fed, now? Would the nutrient drinks dieters and athletes go in for be useful?

Kate J said...

I can hardly believe your parents didn't take pride in your athletic abilities when you were a kid... most people would, whether they were sports-minded themselves or not. What weird people! I mean, I took great pride in my son's music, even though I'm not the slightest bit musical myself, it was just great to see him enjoying something and succeeding at it. Surely as 'Christians' they should have seen your athletic talents (and academic, writing and all the rest) as being gifts from God?

Sorry to hear you're having a bad few days... I was so hopeful for you the other day, about wheeling and all. I do hope you can get back to that. I've got a photo of you, 'flying' in your race-chair, willing you on every time I look at it. Go, Beth, go!
Love & peace...

Elizabeth McClung said...

I don't have any particular athletic talents, just determination and the willingness to spend time training. Why my parents wouldn't take me to my games and I had to ride my bike, change, play, change, ride home, and then shower - I don't know. I think it has affected me since I don't feel good when accomplishing things since growing up failure was openly discussed and taken down point by point but so was an A, examined on how I should have done better. How a B+ showed I was slothful and lazy. So now even, the doing and the preparing are what drives me.

If I am conscious at the finish, I feel guilty, because I 'could have pushed harder' - part of that is me, part of that is being in a very controlling environment for over 20 years and never breaking to them, and part is upbringing. I am the 'bad' child, the one who by being different, or being individual, required others to treat me 'different' hence that was 'bad'. In our upbringing, women who get ill are supposed to just disappear. Blah to that.

I WILL be wheeling a 5K. After I have someone help me breathe and sit up. ha ha.

Lorna, Bob and Liam said...

Oh, Beth, sorry, I fell down my own health rabbit hole and completely missed this last week of your life. So I'm late to the fury/indignation/disgust/concern/shading into glad for the minor improvement party.

I hope this past weekend provided the respite you need to get back on track (little joke there) for your marathon training. Goals are good. Survival even better. You do both very well.

Dawn Allenbach said...

Your parents are the ones who are strange. Why did they have to cut you down? What kind of personal insecurities were they dealing with to treat you that way? It makes me sad that they couldn't they deal with their s--- and support their child the way she deserved?

I'll try to help give you the love and support you need and deserve.

Neil said...

Raccoon's right: we do all seem to have opinions of your family, and we don't need to shove your face into our opinions all the time.

We know you were never good enough for your parents. Unfortunately, you've picked up their conditioning, and now you're never good enough for yourself. your best IS good enough, though, even though you should always try to improve your best.

I'm cheering for you, Beth. And I'm cheering for your accomplishments, whether it's wheeling a 5K or just being awake and conscious enough to write an entry in your blog.

Love and zen hugs,

Linda McClung said...

One of the many things about you that has amazed me over the years is your determination. That really comes through in your athletic endeavours. You wanted to learn to fence and to compete at the international levels. Despite endless criticism and scoffing from your coach and lack of support from family you made it to the Canadian Nationals. I am so proud of you for accomplishing that.

I, along with many of your readers, also don't understand why a parent wouldn't support their child in their pursuits. I always felt good about myself when my parents came to watch me in our school band concerts. It makes me sad that you didn't have that positive support.

We've talked about knowing someone cares about you - and how just saying it doesn't mean anything. Attending games/concerts is a way a parent can SHOW they care about their child.

As for 5k and 10k races... although it really worries me that you want to do them, I'll be there to support you. Not just at the finish line, but at various points along the way too.

Noisyworld said...

Determination, yes that's the perfect word for Beth, determination to: race, box, write, eat, breathe- live and conquer.
I hope you find the strength (and care assistants) to keep on fighting :)

Cereus said...

And here's to having something good to wake up to. I hope that for all you sleep, you have something good and attention-holding when you wake.

Your writing is amazing to me every time - very lyrical.