I have an apology and some explanations and thank you's to give. Last week I was in a bad head space, and to be completely truthful, after 36 hours of continuous pain, I am not in that great a one right now, so I am going to try very hard to think and write clearly. Also, in trying to write this, Victor and other brought to my attention that I forgot things like "sharing" so I have tried to rewrite this, and I hope it makes sense, and if it doesn't....er...I blame the drugs!
Last week in a post called “Angry” I wrote: “It is difficult to explain the depth of shame and pain I get from finding out that people are imitating me; and now the suffering they feel, is to me, my responsibility.” Just to clarify here, that is a stupid, arrogant and self centered statement that I want to apologize to all of my readers for making.
A lot of my readers have disabilities, many of them have little support, less than I do, and many others are single parents or parents of children with special needs, or caregivers or just people ‘getting by’. I do stuff and I write about it. What gives me the right to say how what I do or think can be used by people, particularly people who are using it to motivate themselves, to use it like a cheerleader in the mind to get them over that bad patch? I don't. I have NO right.
I write what I write and I would LOVE to hear in an email or comment if that helped you do something. You are all mature individuals and you know your conditions and your lives and it was arrogant AND presumptuous of me to think that it was all up to ME; all about ME, MY fault, MY responsibility if anything went wrong. If you have CFS/ME, or you have Lupus, or you have Lymes or you have three kids and you are a single parent and something I write speaks to you and says, “Let’s go adventuring!” and you do that. That’s you! That is you taking a creative work and making it into something you can use to make your life better, and I have NO RIGHT to claim or even imply credit for that; if you went out and dug a garden because I went out and did a race, then great! I’d love to hear about it, love to hear how it went. Because you know your condition and you know that my condition is different, and you are an intellegent person. And if what I wrote made you think, I'd like to hear that too. But to claim it as "my responsibility"? Come on!
I was being an ass when I made that statement in "Anger", and I hope you can forgive me. I take people’s stories too, I read other people’s blogs or emails and I get a voice in my head saying, “Go and do likewise Beth!” But at the end of the day, that is my choice (and my decision to take those risks, not the people who I imitate), and while they inspired me (yup, they, and that includes you, the readers that "inspire" me – so back at ya! You probably 'inspire' me more than vice versa - seriously, I had no MP3 player, no music, so who did I talk to in my head during that race - well it was all of you!) I made the choice. And while I appreciate, desire and in may ways need the support to complete that choice, I am the one who has to actually do whatever crazy thing it happens to be and then I am the one who because of that choice has to live with the consequences.
So please forgive me and let me back in and tell me the stuff you are doing?
I just re-read that last bit and rewrote some, as it sounds like we all need to be very selfish and that we can't do things together and that is not what I meant at all. I do not achieve alone, and yes, people do deserve credit for helping me, for inspiring me and later I hope I make that clear. What I was trying to say is that, if people ARE inspired by me, and I am in a space where I don't know how to deal with that, or what to do, well, that's my issue! But I hope I am gracious enough to support them, and care about them and hope that they succeed, as they have done so often for me. But no, I don't have the right, to determine what they do, or why they do it or what parts of my writing they use or don't use, and the same of my life. But that doesn't mean we all live alone, that we all must struggle alone, grabbing what we can from others. I hope we work together, have fun together, like the May Madness weekend. I just, felt it was very wrong of me to put my own doubts, my own fears, my own worries about how others were doing because I didn't want bad things to happen to them and so I said something that implied those who are inspired by me, if bad things happen (as they sometimes do), they it was THIER fault. And that was immature and very wrong to write and I apologize.
And while I might or someone else might inspire someone to do something, in the end of the day, the person who made the choice, they are the ones who have to gut it through; who have to see it to the end. All I can do is try and support them as much as I can. And so they are the real (oh, another one of those 'words' coming up) heroes. Okay, I hope I explained and apologized enough and we can move on?
I realized today that I have a VERY surreal life. I mean, I am having seizures every day, and debating going to the hospital and then… a few hours later, go and do a 10K in a racing wheelchair. And then go right from the finish line, and the first aid tent to back to being on oxygen and not moving and having little seizures that day.
I have actually gone FROM the hospital, stopped at home to nap and then gone directly to boxing, or badminton with the hospital ID bracelet still on my wrist. So I admit, this is NOT really a typical life for anyone, is it?
So yeah, I went up tonight to do badminton because my right arm is getting purple/black and I wanted to see if that improved it. Well, the badminton DID make my right hand twice the size of my left hand (I showed everyone the neat ‘freaky human trick’) but then had to leave when my arms were green (too hot!). And now I am back on oxygen. And in pain so bad that I am doing the “how many minutes till my next pain pill?” Plus a new overnight care worker came; I said to her, “I’m not at my best, you know the whole 36 hours of continuous mind blowing pain.” I REALLY hope that tomorrow that goes back to normal: the annoying to aggravating pain.
But the thing is, how do I get to live this life where instead of being curled up into a fetal ball, I go out and do stuff? Is it because I am some super crip, or heroic or some dying woman who is living life to the fullest. The answer to that is no, no and yes. And some part of that is me, but the other part of that is the people who support me. Could I have done the 10K without Linda and Cheryl? No. I could barely wheel back to the van to ride home much less wheel down to the start and then back again. I could not have snapped the cold break packs, or stopped the EMT from putting blankets on me and warming me up. I did not get the chair ready the night before, they did. They put out my clothes, they talked to me and kept me calm. I could not have done the race without a woman named Janet who fixed my racing chair and gloves because she said, "I want Beth to do what Beth wants so much, to LIVE.....right up to when she dies."
Sure, I was going to badminton tonight solo but Linda nixed that and came and did work for her job on the laptop, just to keep an eye on me. That is how I am able to do all these things and live to write about it. In the same way, how is it that I am able to write EVERY SINGLE DAY? Is it because I want to leave a record, and have some meaning to my life? That I have set myself a challenge? Sure, but it is just as important that I am part of a community of people who are there to lift me up when I am down. The readers, those who comment or not, are part of my support network. They are my family, my friends and the people who I share my life and vice versa. The people who send me packages, and gifts and postcards are the people who are a physical part of my life. The 90+ people I send postcards to are people who I am emotionally invested, who I take delight in finding “just the right postcard” and “just the right sticker.” I do it for them, yes, but also I do it for me, to be connected to humanity and to care about humanity.
I am able to go to Goldstream, and to the Cemetery and to the 10K race and everything else because I DO have a net of people supporting me, some right here like Linda who hold me up. I KNOW that many of my readers do not, so making comparisons in such cases is unproductive. I am fortunate and I know it. What would I do without Linda? I would be lucky to get my groceries. Getting my stuff from the pharamacy and to my medical appointments would take up ALL my energy. It is because of her and others that I am able to have choices in my life; and about what to do with my life. And this week that choice was to do a 10K and now I have to recover from that. And she is there to help me.
Up at badminton, one of the guys who was pretty stand-offish for months came up and said to me, “It is great that you come out…..I mean, that you come and play badminton in a wheelchair at ALL is incredible.”
And I said, “Well, if I WON, that would be incredible, but just coming out and trying, that only gets me a ‘pretty good’”
He looked baffled. And was probably hurt. I wasn’t trying to diss him, I was trying to explain that being in a wheelchair and going three blocks to the Y is not incredible. If he wanted to think I am incredible, look at the time and effort I have put into the sport of badminton and how I am improving myself. I told them I was a bit tired as I had won the 10K race in the yesterday.
He and his girlfriend were totally speechless, “A 10K….in your wheelchair?”
I avoided the “I find it easier than dragging my body miles with my arms” line and said, “Well, in a specialized racing chair, but yeah.” They were blown into speechless. I was AMAZING!
There were close to 1000 runners yesterday, how many had cancer, or were recovering, how many had recent losses and grief, how many had arthritis or how many decided to lose weight and took up running by themselves a few months ago? I did a race. And yeah, because I am weaker, I am facing seizures and autonomic failure on a weekly and daily basis, it was pretty amazing, but I bet there were 10, 50 or 100 ‘amazing’ stories out there that day.
What is amazing is that I have a partner and a sister/friend who help me WEEKLY achieve my dreams, who give me the chance to make stupid choices. Who are with me during the good times and the bad and who help me try to feel an equal person after a loss of memory or when I have trouble speaking. That I have friends like Maggie and Lene and all the other people like Neil who write and care, all the people here on the blog: that is amazing.
To end with a smash of realism: am I worse? Yes. There is another D word that no one wants to use: dementia. Do I have it, well according to the technical definition, I do some days. Will it be part of my future, I hope not. Am I weaker? Yes. Am I thinner than a few months ago? Yes. Do I have less reserves regardless of whether I try to horde them or not? Yes. Have I had a remission? No. Am I going to? Probably not. Do I have to fight fear and depression and pain every day in order to do what I think will give my body the best chance for a longer survival? Yes. Will I continue to pursue my dreams, whether they be sending everyone who wants one a couple postcards and caring about 90 or 100 people I will never get to meet, or looking forward to a trip to San Francisco which may never happen? Yes. And I will use whatever means needed to get through a day, a week, a minute, an hour. I will use your stories from your blogs, I will use your emails, your messages: I need them. And I am not ashamed about that. I need them to keep going. I may not get to thank you individually, so thank you. Yes, I am taking your stories and using them to keep going. And anyone who wants to take mine is free to do so, the same with pictures. It has always been so (devo’s excepted). Just try not to sell them as yours.
And thank you for cheering me on on Tuesday. I heard every one (even the silent ones).
12 hours ago