Hey, have you ever had a day that was spent putting out fires? I have. Today. Anyway, I am fully punked, as in not get out of bed punked but today was the day, so pain or not out I get – cleaning house day. I have a person that comes once a week and she helps me after she does dishes and food and makes my bed. Today we did vacuuming, which has not been done in many, many, MANY months in my house. Because we are too busy doing so many things from wills, living wills, applications for accessible housing, applications for hospice programs, power of attorney forms, forms for filing to Blue cross for preapproval of 80% of an oxygen concentrator, pre-approval for 80% of a $17,000 wheelchair, and that is but 1/5 of the paperwork, not to mention the medications, the post left unopened…you get the picture.
So, with my oxygen on, I cleaned the floor (being in a low wheelchair helps that) put stuff up on the couch and then got ready to vacuum….....only, the vacuum was clogged with hair, which had to be cut out for 25 minutes (hey, where did you THINK all the hair I lost went?). THEN we vacuumed; the room where overnight people stay so the floor is nice and clean now so things like ants and spiders are not attracted to loose food; the hallway, the bedroom, the living room, the kitchen all clean. This makes Linda feels like she has control. The laundry was folded up (still not put away, not enough time in the day). Then I passed out.
After I came to and rested a little I made a fast wheel in the heat to get something framed I had wanted framed for a long time, I had been trying to make it to a place five blocks away but two hills away for almost two weeks. Today I made it, I got it framed. Tomorrow I will take a picture, it is of a Anime Cell, it is very cool looking! I made it back. But was hot and I got heat exhaustion. I almost vomited; there AND coming back. The operative word here is ALMOST!
Once home, I drank liquids, and rested. And wrote emails, replied to email, tried to keep up. Sometimes it is hard, but then on weekends, my 'inbox' is empty and no one talks to you and then it is sad and quiet. I thought of Collette who has finished her orientation and now is getting ready for her first 30K tomorrow (I write more about it here). I know you can’t hear me from that far away but “GO Collette GO!”
Today Linda told me some stuff about her job. It looks like there are some road trips for her ahead as she now has seven ministry clients. She is like the Landlord for the government, so if for example, one of her clients was Tourism, that means she is sort of in charge of EVERY tourist office promoting BC, in all the towns across BC including the GIANT one at the Peace Arch. And to do her job well, she needs to go and fly to these places, take a look at the sites and see what the different sites needs (IF, for example that was one of her seven clients). But for example, the Vancouver Olympics is also someone in her offices client. So clients get switched around. Now that she is a full time 85-90% up and running trained manager of government portfolios, it is time for her to hit the ground. Which means me in respite. Because Beth slumped over and found days later by a bad smell in the hall is not good for anyone (particuarly Beth).
Now, in some ways, I am very excited for Linda, and in some ways sad. Because we came out here together from the UK to start our careers; we both had resumes and education and we were going to start CAREERS! And by now I was going to be teaching or on a research project or doing some book tour or the like. And she would flying to inspect sites, before maybe moving on one year or two to do Government Policy Planning. Except, while she is doing that, I am falling further behind, left behind sometimes literally: making beds, doing laundry, folding laundry and vacuuming. It isn’t exactly how we planned it to be.
But I can spend all my time bitter or I can say, “How can I make a difference in Linda’s life, in our life to make it better NOW?” But yes, I am a little sad.
But then, I realize that soon, I won’t have the energy to do that, I won’t have the energy to wheel those blocks and get my anime cell framed; that Linda will have to do it alone, both her and my needs, and wants and all of it. I won't do the laundry, or fold it, or put it away. By then sharing some time together, talking a bit on oxygen is all I will have to offer. She will carry me into my wheelchair, or put me on the toilet and all I will have to offer is a joke. She will wash my hair, she will hold my hand while I cry and all I will have to offer is……………
I don’t know.
There are more books telling Linda how to “move on” than telling me how to “stay here” and how to deal with it. Anyway, I am sorting postcards and getting what I can do done while I can. If you want a postcard, if you know of a niece or nephew or a son or daughter, or a mother or father who would like one, now is the time to email me. I have only so many weeks left and then the postcard project will start getting less and less. Please. I WANT to send the postcards. But I can only live in the now and the near future. If you wait, it WILL BE TOO LATE.
Please, don’t deny two people a bit of joy (the recipient and I) because it seems forward, or pushing or I must have a lot of other things to do. Of course I have a lot of other things, but THIS is what I have as an accomplishment. This is what I say every week (I did X amount of postcards). This is the part of me which isn’t vacuuming or laundry. I am still alive, I am still writing, I am still producing work.
That’s my day. Back to work for me!
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4 hours ago
12 comments:
Dear Beth,
Taking care of things around the house, laundry, vacuuming may not seem like much, but it is important.I know these things make Linda feel better. It's good that you can accomplish so much & still go out on an errand. I hope there will be cool days for future errands.
Of course you mourn for the career & life you thought you'd have. And that you should have had. I wish i could still do housework & cook (especially cook - I was good at that!) for Dennis. Make my house nice & comfortable for guests. I'm hoping to be able to do some of those things again. Don't know if I'll ever be vacuuming again! Now that would require fewer infections & some kind of remission of my Lupus.
I remember after I'd been sick for several years at least, one of my friends called & I was telling her about my situation. And she said "Oh, so you're a housewife now". i was dumbfounded. I'd have been happy to have the strength & energy to take care of a home. But how flippant - to think that the carrer I'd planned & all the years I'd worked to get my degree (not to mention that I had a 4.0 average all the way through my coursework until I got that one A-, grr!). That despite being ill already, I had completed my exams & if I could have continued being only on that level of sickness (constant sinus infections, respiratory infections, onset of Lupus) for another year or 6th months, I would have had that degree. Not to mention, that I wasn't sitting home feeling a bit tired, not at full strength.
But I had time to get over this loss, time which you haven't had & may not have. A few years later, I made my peace with it. I thought, maybe I have this illness to make me realize that what is most important to me is being a wife & hopefully a good mother. To love & cherish Dennis. After all,one of the reasons that I went for my PhD was so I could get a good job with flexible hours, so I could have a child. I'd be happy being a wife & mother. Maybe that would still be possible for us. But that didn't come to be.
It must be so hard for you & Linda to have to go through this. she has to take care of business, somebody has to pay the bills. and sometimes you feel that you contribute nothing. But you do. You are. You love her. I know the pain you feel that you are being left behind, only in this small part of her life as she is out in the world. And the grief you feel that your illness has brought pain & sadness to her life too.
I'm still hoping that Dennis & I will have some good years in the future. But I know how hard his life has been because of my illness. But something has kept him with me, I must have given him something of worth. It takes a strong spirit to live what you've been through, to have so much of what you did and were take away from you. But the even last spark of Elizabeth will be something of great worth. And you, right now, as you are this very minute (sleeping, I hope), are worthy of this love you share with Linda, worthy of admiration & friendship. For who you are, for what you give & what you allow others to give you. And still a force to be reckoned with - wielding a sword or a vacuum,
Sharon
Hi Elizabeth,
I am getting settled in here in my new place which in this case means cleaning the things I rescued from the ruin of my apartment. Things like unwashed dishes that have been in storage for 2 months and vacuuming accumulated dust off things, then realizing that I took out the bag before I stored the vacuum cleaner and hadn't replaced it yet.
Your latest postcard was the first mail I received at my new address. Thank you for helping me to keep my sanity this summer.
sharon, what a beautiful post, you crystallized many things that I wanted to talk about, but far more eloquently than I ever could ..
Reading your experiences helps me understands Beth's so much more, and although I don't know if I could ever really understand about the chronic pain, the loss of some past self, as a committed partner, I do know about the struggle to do whatever you can for the one you love, even when it means sometimes not being THERE ..
Do not demean your household duties, dear. You said it makes Linda feel like she has some control, and I'm guessing Linda feeling control is a happy Linda. You are doing now what you can do to help her feel happy. Tomorrow you will do the same. A long, long, LONG time from now you will do the same. Sure, you will get to where you can do less, but you will always do what you can, and she knows that.
On a certain level, I understand your hurt for the loss of your career. I had dread last week (and still do) that loss of power from Gustav would kill all my fish and bring about the end of my Ph.D. unless I can come up with a significant amount of money. Now there's the possibility of Hurricane Ike causing trouble, too.
I'm happy for Linda but sad for you at the same time. I cannot imagine everything you're feeling.
I look forward to a picture of that framed anime cell. Much love, sis.
Please, pass on my congratulations to Linda. She certainly deserves the new responsibilities she's achieved. Like you, she's a dynamo. I guess she'd have to be, or she wouldn't be able to keep up.
Does it take any of the sting of the lack of career away to know you are Famous!? OK, it's sort of a limited fame, and mostly just an internet fame. Still, it goes to show that career success and fame don't go hand in hand. No one is paying you for it, but you are damn influential.
In honor of you, I will even put away some of my own laundry today. I'll tell you after I've done it.
So much of what we consider our value to other people is tied up in practical things and when your body cannot offer the practical, what is there left? What is your worth? I've struggled with that one for years, increasingly so as I can do even less than I used to. I know that love is at its essence completely non-practical, but it's hard to feel it. I also know, though, that if you asked Linda what you offer her, there would be a long list and vacuuming wouldn't be on it.
In a parallel reality, I have the career I went to school for and in another, I have children. Grieving what should have been is normal, but knowing it's normal doesn't make it any easier.
I'm getting all philosophical here, but I really think that you're doing important work here in the blog, with the postcard project and by just being you. You're changing lives, perhaps more than you would have if you were teaching. I know. Doesn't help the sadness all that much, either.
(Sorry for getting so verbose - I'm using Dragon instead of typing and that always gets long-winded)
You put words so many things I am thinking & feeling & do it so well. Thanks for doing that.
I do think you have a career, sure there's no pay & all, but you are a constant voice who speaks for many people. You speak for people who can't or won't speak for themselves, but your voice is out there telling their stories.
Ok, ok I'll go email you my address for a post card, I don't know why I haven't before since I actually collect post cards.
Getting important paperwork/calls done always seems to be so draining especially when you feel like you are banging your head against a brick wall just to get a simple question answered. Cleaning the house seems a more tangible thing that gives a sense of accomplishing something, at least that you can look at and say finally I got around to it. At least that's how I feel when I finally get around to doing necessary things like cleaning my angry cats litter boxes so they won't pee in the corner by our front door.
I would love a postcard Elizabeth, that would be a frameworthy thing to me. I agree with the above poster about the internet fame! You are one of those people I would like to have dinner and gush over gorgeous anime with along with Kevin Smith and Shinichiro Watanabe (director of Sailor Moon and Revolutionary Girl Utena). I think I have given you my email address? I hope so if not let me know in a followup comment and I will just send you an email.
isn't it kind of shocking how much a person's self-esteem is caught up with physicalities?
"I can do this thing." "I can do that thing."
We tend to discount emotions, though. "Yes, I love, but I can't DO..."
Now, I've forgotten where I was going with this...
Sharon: You did such a good job of writing this up that I thought that YOU would be the person to write a book about surviving a chronic condition. Yes, they are important, but so was my career, and life.
I too had special recipies that I wish I could make, but I can't (heat thing), the comment about being a housewife, the condition as a career is one that is reflected in so many comments or stupid statements when people don't know what to say. Kind of like "How are you doing?" - "Do you REALLY want me to answer that?"
I don't know what it is to look an illness six years in the face and go down into another long trench, I don't know how to keep my self worth my value in a situation like that. In a way, I expend everything all the time becuase I know I have to keep nothing back, I BETTER keep nothing back: because there is no going back.
When things get very hard in the weeks and months ahead, and they will, I will try to remember what you have written here.
Stephanie: I'm really glad the card reached you are you are getting settled. If it helps, I still have boxes I packed to move TO the UK which have moved continents TWICE and remain unpacked (whatever is inside will of course be super important).
Bummer about the vacuum bag, that has happened to me too - sucked, laugh later....much later.
Victor: Well, I agree.
Dawn: Yes, I try to gift her as I can in the ways I can. I try to make her happy. I could spend that energy doing a paper, but then I would have to focus all the time on editing it and sending it out. Linda needs underwear, Linda needs shirts to wear.
I'm happy for Linda too, it was just this is what we were doing together; as partners. Equals. It is not a world that sees "government manager with portfolio" and "vacuuming" as "Equals".
Yanub: She is really looking forward to her new clients and helping them with everything and she does deserve it; she does a great job on whatever she puts her mind to - but is such a perfectionist I have to be a cheerleader during the information overload time.
So - have you done it - I have't yet!
Lene: It isn't some fantasy, it is the lives that the people we see around us living, it is the lives our society tell us we WILL have if we just eat right, and go to school, etc.
That is a lie, in our cases. That we have to fight this haze of a lie....for what, to find that what we do have little to no value in society and thus we are seen that way. To fight against that when we having the least amount of energy to do so?
This is not the "Best of all possible worlds" but it is what we have been given. Lucky us!
Queen Slug: Well, a career with no pay is pretty much what I have done before this too. Of course it had a title - telling people you are a blogger makes them give you lookes like you are a peeping tom or have some strange sex fetish.
thanks for the compliment but email the address: I am at mpshiel at hotmail.com
N1N4Ag1RL: you too! Arg! I will send you a postcard but I must have address.
As for phone calls, I spent five hours on the phone to make sure "the angel of death/mercy" would not return in a few nights to "take care" of me - was that important? Well yes, but also consumed and entire day. Maybe the people on the other end of the phone have nothing better to do, but I do - and postcards IS one of those things (so is going to the bathroom, and masturbating, and staring out the window....oh yes and vacuuming - and don't use vacuum extensions for masturbating, the vagina is a not a toy - well it is but that doesn't mean you can put anything you want in it! There, that's my public announcement for today).
Raccoon: Stare at thing, feel good. That's why I get stuff. That's also why I get vibrators. Okay, I don't stare at them. I forgot where this was going.
Yes, Beth, that was a really hard thing for me too. My career, all the work I'd put into getting my degrees. And then becoming ill _ my life turned upside down. Not being able to even make a living. That first summer after my exams, I tried to get my summer job that I'd had for 2 years working for a summer literacy project. I went to the interview, but knew there was no way I could drive to the job or do it in my present condition. but not to worry - they didn't even hire me - must have been a bad interview. I was supposed to be writing a paper, but I couldn't understand the journal articles I tried to read. Then I ended up in the hospital with pneumonia, started the first round of specialists. At first, I struggled on a bit with my studies, so I still had fellowship money. but then I had to take a leave.
I remember when I first actually ran out of money of my own -empty bank account. I didn't want to tell Dennis. Still had no proper diagnosis. Still didn't know why I couldn't just take my life back by force of will. It was really hard on the self esteem. It was difficult the first years - a hard thing. I didn't feel like an equal, Dennis had his job, friends, a life that I couldn't be fully a part of. And he had to support me. It took a long, long time to work that out.
We've had over sixteen years of illness.
Time that you haven't had. Time you may not have. It hurts, I know it does. You've already accomplished much more than I ever did in my academic time. Written books, that's something I really do admire & respect. It must be terribly hard not to be able to do those things now. Even now with the blog, the postcard project, you reach out to people. and some are very fine people, like the people who comment here. You write every day, another thing that I admire greatly. And you write so well - as we all know.
You do go all out. That is your way. You fly, your blaze through the universe. And you make things happen, get other people involved. You have really helped me during a very hard & dark time for me, for Dennis & me. And I' sure that there are other people your writing & friendship have helped.
I'm so sorry for the loss of your career - you would be a brilliant teacher. I'd love to study under someone like you. In fact, in a way, I'm feel that I'm doing that now. We all know how beautiful & moving your writing is, even or perhaps especially when you write about hard, sometimes stark things.
I wish that you and Linda were living the life you had envisioned together. Grief is hard. I like what Lene Anderson wrote - that in a paralell universe she had the career she studied for, and in another she has children. I wish this was the universe where you and Linda were out in the world together, building your duo brilliant careers. A universe with many books to read by EFM.
PS: If I ever do write a book (well, maybe an essay or article), your name will feature prominently in the acknowledgments
Sharon
all I will have to offer is……………
I don’t know.
I sympathize markedly with this. I do not have serious disabilities, but I seem to wear out more easily than most people (RSI and similar stuff) so it's a balance between work and life. If I'm working a lot, I get NO housework done although it's supposed to be a mutual responsibility in our household; if I'm not working, I'm broke and drain resources; and I get very self-flagellatory about "not being sufficiently useful."
The answer from my partners is always more or less "if I wanted useful, I'd have married a robot, or any number of more efficient people. I didn't marry for efficiency, or money."
And it never quite sinks in until I realize that if my partners had similar issues I'd haul ass/beg/borrow/steal on their behalf; that if I had a proper job I'd want to use it to support more household costs so that when I wasn't working I could see them more -- not see the clean house, we don't even make our fucking bed. See them. Because I love them.
Being someone to love is not necessarily a tangible quality, but it is a valuable one. It's easy to measure things in money (and yes I count household work in that too, because there are going rates for it) but ultimately these are the least valuable things, in the REAL world, the inner world, the world that people belong to as people. And love is inestimably valuable.
"I am not a number! I am a free man!"
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