![Maria Sharapova attends the unveiling of her collection at Cole Haan Rockefeller Center Store on August 27, 2009 in New York, New York.](http://www3.pictures.zimbio.com/gi/Maria+Sharapova+Unveils+Collection+Cole+Haan+YOIV3qQXUn4l.jpg)
![Tennis star Maria Sharapova attends the unveiling of her collection at Cole Haan Rockefeller Center Store on August 27, 2009 in New York, New York.](http://www3.pictures.zimbio.com/gi/Maria+Sharapova+Unveils+Collection+Cole+Haan+ZG-lRx1E8EDl.jpg)
![Tennis star Maria Sharapova attends the unveiling of her collection at Cole Haan Rockefeller Center Store on August 27, 2009 in New York, New York.](http://www3.pictures.zimbio.com/gi/Maria+Sharapova+Unveils+Collection+Cole+Haan+DBA5NAC7Ppnl.jpg)
![Tennis star Maria Sharapova attends the unveiling of her collection at Cole Haan Rockefeller Center Store on August 27, 2009 in New York, New York.](http://www4.pictures.zimbio.com/gi/Maria+Sharapova+Unveils+Collection+Cole+Haan+pdzgJlhWneml.jpg)
![Tennis star Maria Sharapova attends the unveiling of her collection at Cole Haan Rockefeller Center Store on August 27, 2009 in New York, New York.](http://www4.pictures.zimbio.com/gi/Maria+Sharapova+Unveils+Collection+Cole+Haan+9sbUfLu-Z21l.jpg)
![Tennis star Maria Sharapova attends the unveiling of her collection at Cole Haan Rockefeller Center Store on August 27, 2009 in New York, New York.](http://www3.pictures.zimbio.com/gi/Maria+Sharapova+Unveils+Collection+Cole+Haan+p2UDFOPCsYDl.jpg)
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Well, I want to live. I do. And if smashing against the wall of my body to find a way into extending the time before I can’t leave the bed, then so be it. I have been working and monitoring almost everything I do at 15 minutes intervals for months to stave this off. Talk about burnt-out! I need to get to Hawaii and I need to do that in my Titanium Chair. To go to the Big Island and Cremate myself if that is what it takes. I have Cheryl and Linda to restrain me from acting on those types of thoughts. I still plan on going to see the lava and the stars.
I would do so much, would have done so much more, if I had known how much energy it takes to simply be held upright and breath in a $24,500 wheelchair just made to support me...could I have gone on? The fatigue is a cruelty. So to do that for 10 or 12 hours a day takes a lot of energy, makes me so, so tired.
And to do that, shower, dress, go wheeling uphill, go out if not every day then several times a week, to prepare to externally retake my life of last year. Why? So I can get back into boxing. Because that is where I sweat before and if I don’t sweat soon I never will. I will risk the daily seizures, the daily mini-strokes, the stopping of breathing, the pain, God why did you make the body have this many ways to hurt, to achieve that. And I am only a couple steps away.
Yes, the last few months have been me faking it, pretending that I was in better condition than I was. Sorry. I didn’t want to disappoint you. I didn't want the disability community to move on because I wasn't any type of disabled they could identify with anymore. Plus I didn’t want to be stopped (the PLAN!). Do I pretend so I can continue to make a difference or because I am selfish in the extreme: both.
In the west, I am trying to track down a saying that ‘We don’t do suicide missions’ but all other countries built suicide subs or human guided torpedoes, even the UK and Italy. There is a culture which does not lay it all on the line – isn’t that the service to the British Empire, Gordon holding off the hordes, to lay one’s life to the better land? So what will I sacrifice to stay disabled instead of dying?
Sanity.
Fuction of limbs. The limbs themselves.
I never ask people to do what I ask of myself. Why not? We are all human. If they feel agony, then can I. If they can feel pain and loss then so must I. If they grieve over what is lost, then so do I, so do I. Except I can’t grieve for the losses which occur in a week, a month much less a year so I don’t talk about them, don’t write about those losses much.Who would understand anyway?
Why not rest? Because I have a progressive disease that never rests. And because I am only holding on that will power to get me out of bed and into my wheelchair by a thread, the one that lets me push that bit further. That 'thread' and routine get me out of bed, that and planning get me out the door. That and vanity to appear ‘okay’ to anyone passing by or that I met makes me expend a half days’ energy in a half hour. The fact that I can spend the energy that helps me breathe doesn’t make me bright when I do it, but I do.
Whenever there is a disaster, or when people start running, there is one person, me, who starts running toward the problem, and that’s the way it has always been. Even now, I still want what I recognize is the easy way: to die for another. A bullet to the head for me, to save someone, to save me...that is the easy way.
That’s why I like Terry Fox, because for him it was always hard. The training was hard. The days of cold were hard: minute by minute. The blisters on his stump end were hard. The pain, yes, the pain was hard and maybe if he had been offered regular check-ups they would have caught it early enough for him to live. But that would have meant someone, somewhere taking responsibility so while he shook the hand of the Prime Minister, he didn’t receive medical care while running 3,339 miles, more than the breadth of the USA in 143 days but only when he could not go on another day.
Tonight for the first time I read the letter, the first one he sent for fundraising, to the Canadian Cancer Society of those in the ward he left:
“There were the faces with the brave smiles, and the ones who had given up smiling. There were the feelings of hopeful denial, and the feelings of despair. My quest would not be a selfish one. I could not leave knowing these faces and feelings would still exist, even though I would be set free from mine. Somewhere the hurting must stop...and I was determined to take myself to the limit for this cause.”I can think of no better summation. To continue to live, to keep going, to take the pain as I can't get out of bed. To go on even after speech and other functions have failed, as long as words can be recorded is my future. I will take risks to extend it, even though it is going to be hard.