Hi folks,
I’ve been blogging for 3 weekends and think it’s time to step back and take a few moments to reflect.
My original intent for taking on the weekend writing was to give Elizabeth a break. Well, I don’t think she’s had much of a break. Even though she’s not writing the blog, she does edit the pieces for me and puts in all the photos. She still ends up doing 1-2 hours of work each night. Sometimes I wonder whether it is just easier for her to do it on her own.
One of my fears was that taking ownership of the blog on weekends would leave Elizabeth in a vacuum. While I have colleagues at work, family members, a counsellor and Elizabeth to give me emotional support, all Elizabeth has besides me are all of you. And all of you add up to a lot of people for which I am very glad. I don’t know what she’d do without you.
But when her blog is her only way of communicating, whether sharing, giving or receiving support, I think I’ve done her a disservice. Many reader comments offering support are directed to me and while I appreciate the sentiments I sometimes feel uncomfortable reading them. I believe the intention is to encourage, but in the process I think it discourages Elizabeth. The majority of comments are for me, suggesting how important it is for me to have my own time. But from another perspective, it could be telling Elizabeth that my time is more important than she is and doesn’t she know that? Or that if it wasn’t for her I could do a lot more stuff. That she’s a burden. From that perspective I think these comments could hurt her. And that makes me feel bad.
On weekends her volume of email decreases so when she opens her inbox and finds more messages addressed to me than her that makes me feel guilty. I know I’d be miffed if my inbox looked like that! And I imagine for her it feels like I am taking her friends away.
So, where to now? Elizabeth and I have discussed on numerous occasions the value that I can add to her blog by presenting a caregiver’s view. This is still true; however, I don’t want to take away from the value the blog currently has – to be Elizabeth’s voice and support network. This network is so important to her. I don’t want her to ever feel like it’s not her space any more or that people care more about me than her.
She needs you. When she’s not at doctor’s appointments or exercising to keep her autonomic system functioning she’s home and usually alone. I, on the other hand, am at work all day surrounded by colleagues, I get to do exciting things like fly to Vancouver in a float plane for important meetings, help define green projects and rollout training on our new computer system. The best support you can give me is by supporting Elizabeth.
I’m not sure what this means in terms of my writing here in the future. Maybe we’ll do more ‘she said… she said’ pieces where we both have a voice or maybe I’ll just guest blog on an ad hoc basis when Elizabeth needs a break or I have something really important to say. Either way, I won’t disappear from the blog. You’ll still hear about me through our day to day events Elizabeth writes about.
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11 hours ago
19 comments:
I would very much like to see you, Elizabeth, doing the majority of blogging. Linda provides a different perspective, and I am glad she can pitch in when you are too wiped to fight with the keyboard or the software. But maybe she could do a bit more transcription for you and less of writing about you in the third person.
"he majority of comments are for me, suggesting how important it is for me to have my own time. But from another perspective, it could be telling Elizabeth that my time is more important than she is and doesn’t she know that? Or that if it wasn’t for her I could do a lot more stuff. That she’s a burden. From that perspective I think these comments could hurt her. And that makes me feel bad."
Uhm... Huh?
I look at it like this: if you don't take some occasional time for yourself, then you won't be able to be there for Elizabeth when she needs you.
A little story:
Seven years ago, I took a trip to Massachusetts for 10 days. I brought along one of my staff, figuring that my family would be able to help out. The way things turned out, my family only helped get me in and out of my chair. That meant that my staff person was with me for 24/7 for the entire trip. Driving me places, me visiting with people that she didn't know...
By the end of the trip, she was getting... irritable, I guess you could say. Snappish. She needed some time away from me. It didn't take much, just a couple of days, but it was away from me.
I'm on a forum for SCI and their relatives, caregivers, and friends. Something that's been brought up again and again is that the caregivers (etc.) need to take time for themselves. Otherwise, they end up being of no use to the injured person.
Elizabeth, (this is been bugging me for a few days) what do you like being called? I've seen Elizabeth, Liz and Beth. You know we love you, right? You know that Linda loves you, right? You know that one of the ways that we can express our love for you is by expressing our love to Linda, right?
Oh, and didn't this turn into a rant! Sorry.
The question here is, did any of that make sense?
yunub: I have read the post, but I like that Linda can give a different perspective on the experience, and say things often that I refuse to say becuase of pride or other issues (vainity). But Linda wrote her own newsletter for years and right now, doesn't WANT a blog, and doesn't want a co-blog, and I respect that.
Raccoon (this is sort of generally directed so please don't take this as some attack on you, it is just I think it may answer many questions): This issue was brought to a head and addressed about 9 months ago. Which is why about 80% of my caregiving hours are spent effectively taking care of Linda, or rather doing things so that Linda does not need to, or being with me so Linda does not need to, or having people accompany me so Linda does not need to. Very little is actually spent caring for me and I doubt whether any caregiver today or tomorrow could tell you if I have eat, or shat, or pissed or how high my fever was or any other issues of that nature.
And the simple truth is except here, Linda's hours are more valued by society, seen as a higher priority as society and thus. Linda has choices on whether to sleep in many days, whether to take naps. I never have that choice. Linda has a choice on what to eat or drink, to act spontanously, to come home when she pleases and can work overtime or go out with people as she please - we have set it up that way. I do not. I live because my life is structured for maximum efficiency within my limitations; without it, I would not live for very long. From the morning I MUST drink X, and Y, must take pills, must sleep at time Q, must do certain things at certain times and without that I will quickly be in the hospital. There are some/growing aspects which I cannot carry out on my own. These require assistance; we have made sure, if at all possible, they do not require Linda's assistance. If Linda wants to go away for a day, for two days, for four days and she has, she can. That is in place. I cannot. That is simply the way things are. Linda has grief counselling on death and dying paid for by her work. I am glad she is taking it. That is not currently available to me. If Linda wished she could spend endless amounts of time away or on her own hobbies. I believe the problem was that she had told the caregivers, she would "take over" and thus we told them not to come and then she wasn't actually taking over. Which meant my health was suffering, because Linda had sort of forgotten that I can't do certain things without assistance, or that my routine was being disrupted which would cause me consequences (And pain). Linda is now aware of that. Problem solved. If she truely wanted to NOT take care of me on the weekend, then I would have caregivers come to ensure that Linda did not have to be there for me, and could spend the entire weekend with her hobbies if she so wished.
I prefer Beth, Linda prefers Elizabeth.
The thing people seem to not understand is that I have always tried to the utmost of my abilities to take care of Linda. And becuase I am sick or disabled does not change my ability to analyze a situation, and come up with alternatives, nor would it change that I would sacrifice my body if needed just for Linda's peace of mind, much less happiness. Much of my frustration is with the limitations upon which my body has put on what I can do for Linda. But having her own space and place in the world is not one of the things missing.
Elizabeth: Linda writes very well, dear, but YOU are the reason I'm here.
You are also the reason Linda's here in print. Her entries have shown us how much she loves you, and how much she worries for you. Her time at the keyboard has allowed her to think out loud and maybe, just maybe, recognize that there are problems to work out. In that respect, her writing is of immense value to you.
But Linda's writing has also been of immense value to some of us, so please don't let her voice fade away completely.
Linda, thank you for writing when Elizabeth was out of her head with fever. And don't hesitate to add bits any time you are able or willing.
Elizabeth, we're your support group and adopted family, but Linda is your main support and your real family. You two are a team, and you could choose to write as a team when it works, or separately or alternately sometimes.
Hugs to you, Elizabeth, and to you, Linda. May you both sleep well tonight, and rise well-rested to fly again tomorrow.
Beth, you have made it clear for a long time that you're looking out for Linda's interests. I'm really sorry if it felt like I was saying you are a burden. I have grown attached to you and I started worrying about Linda thinking how much more she is attached and I wrongly assumed that she didn't have a support system that went beyond you. (I know that Cheryl and Maggie are close,but it seems far to me because they're across the border.) I really respect what I know about your relationship, the communication, the support you give each other... I felt like I was supporting you guys as a team, but I can see Linda's point.
em, posting anonymously this evening.
Hi Beth and Linda
I would just like to say that I am overwhelmed by the love that is shown bewteen you. Linda, you are just wonderful! I wuld give my right teeth for a carer like you! And Beth, you are just wonderful too. I am constantly amazed at the positivity yu show, even when you are as low as you can go. I love you both. Linda, you have shown love, caring and strength. Beth, you have shown the same. I only wish that I could grab some of that strength and hold it as my own!
Please, be good to each other.
Love you.
I'm sitting here struggling to find exactly the right thing to say to you both.
I like reading what Beth writes: I've been reading your blog since Zed came out. And I've liked reading what Linda writes. And since I'm selfish, as all human beings are, I don't want to give up either damn it.
But what really matters at the heart of this is what the two of you sort out between you: shorter posts, a different comment strategy, no editing, two-voice posts, or silence over the weekend.
I'll still be here reading: every morning, with my coffee and the birds, before the day job starts.
Well I haven't been reading your blog all that long and I guess i put together the snapshots I have seen and then don't always get it right. So if I have commented in any way that has been frustrating or appeared to hint that you are a burden I apologise.
This post has been really really useful. I have learnt more and I am clearer. I think when Linda posts I shall hear it as your post told by her and direct my attention to you. I hope in doing so I don't in turn offend Linda!
I thought I had better call you Elizabeth until such time you said it was ok to call you Beth.
There's a programme called The Gadget Show on TV here in Britain and last night they had a jet engine attached to an ordinary bycyle. The guy got up to 30 mph but said it was capable of 80mph if you had enough room to stop again!
I thought maybe you could get the university that built it to do you one for your racing chair. The fuel doesn't last long but wow you get to go fast while it does!
Some still photos of bike with jet engine here
http://gadgetshow.five.tv/jsp/5gsmain.jsp?lnk=401&featureid=789&pageid=1306&show=s8e10§ion=Features
Very silly.
It's a shame Linda doesn't want her own blog because I would imagine it's not easy to express yourself and be honest in someone else's 'space' (it's a bit like sharing an email account actually, which I did with my Dad for a while when we first got online).
Linda, I enjoy your unique voice very much and it is good to see things from your perspective.
It doesn't matter if you can only blog once a month, as long as you have your own space were you can express yourself.
It's a hard line to walk - guestblogging while not taking over. Linda's point of view was valuable (to me, at least) in terms of giving a threedimensional picture of what happenes when Beth's body goes boom. On the other hand, it's Beth's blog. Do whatever feels right to you, I'll be here no matter what happens. Gotta say, though, I really liked the "she said-she said" alternating viewpoints - it gave both sides of the event/feeling in a way that enhanced your equality with each other (does that make sense? It's too bleedin' early to think).
Put anotehr way more in line with my current brain fog: you write, I read. A bit neaderthal-ish, but sums it up. ;)
I've enjoyed reading Linda's posts, though like everyone else, I am here primarily for you, Elizabeth, to read what you say and enjoy your company.
I'm trying to figure out what I would think about my husband's blogging on some of my health issues. I think it would give an interesting/different perspective, and I may invite him to do it sometime. At the same time, that feels a little scary, giving up some "control" over my primary outlet for overwhelming health issues. I do feel like I whine less in life about my health because of my blogging, it feels therapeutic, though I whine plenty in my blog! If he blogged about events, as you did this weekend, I wouldn't worry about that. I do remember that I really enjoyed reading one of your co-blogs (was it one about a doctor's appt.?; it wasn't the fever one, that had me very worried) for the different persepectives.
My other concern about you blogging, Linda, is that you are giving yourself more caregiving work, a lot more. I am a bit of a lazy blogger/writer but it can still take some time to do, but you guys develop very smart and lengthy pieces that have got to take many hours of time. If the blogging is more work for you than joy, then it may be best to leave it for Elizabeth to do so that you can have more time for yourself. I understand why you want to blog for her sometimes, to give her a break. It was from love, because you care about her.
Yanub's suggestion is good--would doing some transcription for Beth help? Or giving more help with photo editing? When I broke my hand, though, I found it very difficult for my husband to transcribe for me. I'm at the point where I think with my fingertips--it's difficult for me to dictate, though it's a skill I could develop.
My own comments are fewer the past few weekends because of trying to spend more time with family, though I still read here. During the week, I often read a blog or two to get a mental break from other work that I'm doing, another one or two later on during the next break, etc.
I welcome reading what either or both of you write, though I'm very eager to see what Beth's written. Whether or not you decide to continue blogging, Linda, be sure you do get some kind of outlet for yourself. I feel hypocritical in saying that, though, because I don't feel like my husband has enough free time for his own interests. At the same time, he's not dealing with some of these health issues, can get out more, etc.
I was going to make the same suggestion as Yanub -- Linda transcribing Elizabeth. However, I know that you push yourself so hard sometimes that you lose your voice. Maybe those days, Linda could give us the blog as to what's going on.
Has Linda ever thought of starting her own blog?
A tough decision indeed. Maybe starting a second blog geared towards caregivers? I know. I know. So much time!
I can barely keep up on my own blog. I don't know how you and Eliz do it.
You are both good writers so that is one bonus. It is good the two of you are able to talk about these concerns and work through them. That says a lot about your relationship and the strength it has.
Linda - As a caregiver I appreciate reading your thoughts.
Beth - You are the reason I am here. By the way, we just had a visitor from Vancouver staying with us for a few days. It was Michel's cousin who came for a visit. By the way, I hope you got my postcard! :)
I hope nothing I've said contributed to the problem... I would have made the same suggestions regardless of which of you was blogging about the situation, since I'd been thinking about it for quite a while.
I've run into some of the same issues you're mentioning here, though I can't write about it this late at night (I am nodding off). Might it be good for you-Elizabeth to gain more social contact through some of the online outlets others like me do? If you have a fast enough internet connection, for example, there's a GimpGirl clubhouse in Second Life where people hang out & have monthly gatherings. I haven't tried it, but have heard great things about it. There's also a few great disability groups through LiveJournal -- GimpGirl, Disabled_Rage (for ranting), No_Pity, etc. There's also InsaneJournal and (you'll love this) the Goth-themed DeadJournal. If you only feel like typing & reading a little at a time in quick in-the-moment bursts (like "eww mold in the fridge!" or "going neighborhood-roaming to clear my head") then Twitter & Facebook are great.
I'm not saying you should ditch your blog, to be clear! :) What I do is have accounts basically everywhere and wander to whichever matches my mood/needs at the time. Blogs are more thoughtful & political, ***Journals are good for feeling cared-about & getting into discussions of personal interests, Twitter/Facebook are stream-of-consciousness that is good for feeling anchored to that big rest of society. It's also possible to use software or websites that will post on more than one site, like HelloTXT.
I think the tag-team posts added to the blog, incidentally. Even though Linda was doing half the writing, it was still about Elizabeth's life & reactions/feelings. It might be a useful way of conveying issues/information that E wants shared but doesn't feel comfortable writing about or bringing up, or for adding in a second "camera angle" perspective when questions (like the "am I disabled, doesn't this defy the social model" discussion) come up. (That is, "X, Y, and Z happens to me" from her, then "A, B, and C also does, though she tries to hide it from Linda.)
I hope this makes sense... Oh, and if either/both of you join any of the sites I mentioned, please feel free to friend me -- I'm Moggymania there too, though I generally don't post much these days.
Linda here...
Everyone: I gotta echo what Elizabeth said about me having my own blog. Not a chance! I've got enough on my plate. But I may be more vocal in the comments of this blog and yes, I expect I'll write the occasional blog.
Raccoon: Yeah, I can understand snappish. But Elizabeth usually recognizes it before I do and suggests I take some time for myself. I'm sure it's equally for her sanity and mine!
About name preference, looks like Elizabeth and I need to communicate more. I've been using Elizabeth on the blog because that's how she started it. When she introduces herself formally to others it is always Elizabeth. It is only when she's familiar with someone and likes them, will she suggest they use Beth.
I prefer using Beth when I talk to her in the third person. Face to face, I have my own endearment for her that I use. And only Cheryl knows it and can use it and only when Beth is in mid-seizure, trauma, etc.
Tom P: Thanks for your perspective as a reader. And thanks for the postcard. We got it! I think I'm going to buy a bulletin board and put it on the wall by the computer or by the bed and post the cards she receives so she can look at them often and remember all of you.
Moggy: Thanks for the list of online sites and the brief descriptions. Not sure if we'll go there, but glad to know they exist.
Linda and Beth - you may be getting a few more postcards. :D
I'm glad to have heard from you, Linda. I'm glad to be reading you regularly, Elizabeth. It was a little peculiar to have Linda this and Linda that but no words from Linda: it reminded me of Gertrude Stein and Alice B. Toklas. In this bit I'm reminded, rather soppily, of Gift of the Magi, the couple falling all over themselves to be good to each other. And it makes me go awww.
Do what makes you happiest. Really.
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