friendships and illness and healing

This is an important post, and one that I have been waiting to write until I was well enough to articulate. Not that I’m all that articulate now, but the feelings are welling up in me and I just need to put them out now, despite my dis/inabilities.

This post is about friendships and illness and healing (pretty obvious, given the title)–and in particular, I have to note that though there will be people who read this in regard to their own friendships, it really does revolve around my own hangups and unique personality. I have a hangup about friendships and intimacy. My tendency is to wall myself off, because I have been hurt by so many “friends”; I spend a lot of my time finding ways to protect myself. These days, given my recent stroke, I just don’ t have the energy to figure out how to protect myself…except to isolate myself.

My friendships are both surprising and disappointing me these days. I blogged in a recent meme that my husband is my best friend–ironically, I blogged that while suffering my stroke (who knew that stroke doesn’t have to affect the body and that it can take such a weird form?). And these days, he has more than lived up to his status as my best friend. He took time off from work to be with me, he still works very short days at work, and he protects me from expending myself. I am so grateful for his presence in my life.

I have received flowers from numerous people. They have been remarkable–who knew flowers could be so therapeutic? There are still a few bouquets alive in the house, still cheering me up with their silent beauty. On days that I feel like shit (yes, I have good days and VERY bad days), it’s nice to look up at the flowers sitting on the shelf and see some proof of caring and thought. I have received multiple emails from people wishing me well, too–they are little electronic blessings. Oh, and the friends who cared for our doggies the first night I was in the hospital! They aren’t even pet owners themselves, and yet they stayed overnight at our house to stay with our dogs until we could book them at their doggie care for the rest of the week.

But there are still the weird interactions and disappointments in friends. I am a sick person now and they are scared or I am scary or something is going on. I am running into the limitations of other people. People who don’t come by, who are afraid to come by. It’s interesting to be on that other side now and see what the world is like to be ill and recuperating. The world spins by so quickly for others, and I can’t help but feel left behind somehow.

I am running into people who don’t believe I’m sick, since I can write emails, blog a bit, move around, speak, etc. I am not a “classic” stroke victim in my outward appearance–it’s my memory that is totally SCREWED. But that’s not very visible, is it? And I’m finding coping mechanisms to deal with my memory issues, so the problems are becoming more and more “hidden.” I’m running into people now who remark, “Wow, it’s so good to see you all healed!” I wince. I try to evaluate what to say–should I tell them they’re wrong? Or just quietly say, “thanks.” Or tell them, “I never had any really visible problems, it’s just in my memory and you can’t see that.” Who the hell knows.

Then there are people who tell me about the sicknesses in their life–I know EVEYRONE’S secret sickness.

There are people who don’t talk TO me, but apparently are talking ABOUT me. Sheeit. That’s creepy. Especially since they are not talking or corresponding with me at all.

There are the people I’ve WANTED to be friends with for years and now I see it: it may just not happen. They are in another plane of activity, and I am not there anymore. And I did not connect with them in that sphere, and it’s definitely not going to happen in the sphere of sickness.

It’s bizarre to go through all of this. To be…ILL. Illness sucks. It sucks so much that even my closest friends want to believe I’m fine now. They convince me I am fine, when I know I am not well. After awhile, I just stop fighting and sit in silence, letting my friends believe their words; it’s clear that they are convincing themselves about my wellness for their benefit, not mine. It doesn’t benefit me to believe I’m fine–I know, because I do that all the time, only to discover my deficits in a surprising and crushing moment.

It does make me feel lonely to hear my friends withdraw their empathy. And what can I say? Like Billy Pilgrim in Vonnegut’s Slaughter House Five, I say similarly, “Oh well.” (But I so don’t feel “Oh well.”)

I wrote the following to a friend who asked me how I’m doing, am I bored?

Kind of bored, but mostly and I hate to admit it, just in the doldrums. I think people don’t realize they have to approach me a bit differently (ie., more proactively by helping me set dates to meet up if they do want to meet up) or maybe people are avoiding me, and so I’m feeling very isolated. Also, I think the world is done with me as a fad and so it is up to me to get well as quickly as possible, only it is not happening so quickly. What is left is a very invisible scar that only I can see. Very maddening.

I am beginning to realize that many of my friends who, whether they realize it or not, are saying the “right things” have dealt with illness in their life somehow. These are folks who have either suffered through illness themselves, or with their loved ones. They have picked up skills and knowledge to be so kind and thoughtful. (Yes, I know there may be friends who are dealing with illness now who just can’t handle seeing me, too). Btw, I admit, I was NOT one of these people who deal well with illness at all.

I was SO not one of these people who deal with illness well that I bought a book called The Etiquette of Illness (written by one of my friend’s mother, Susan Halpern!) a few years ago. Now, I am thumbing through it again, wondering what I can do to help my friends communicate with me more effectively as I swim through recuperation. How can I help people to be with me?

Halpern writes helpful things like, “This is not usually a time for new friends. I found I wanted to see only old friends during the months of treatment; I did not want to put out what it takes to connect to strangers. Sometimes I felt so poorly that I did not want to see anyone but my husband. I knew I was getting better when I enjoyed meeting new people again.”

I don’t have cancer, but I do feel like that. I have my up days and my down days. And my energy is just horribly low for sure as I recover. When you reach out to me, and I say “yes, I want to hang out”–and even though in “the olden days,” I took the initiative and set the time and date and place, please take that step for me. Propose a time and date for me. I keep forgetting to do things like that. I am dropping balls on correspondence, knowing I want to meet people but not having the energy to make those extra steps. I had a friend write to me, “How about this time, I can come over, we can do such and such, let me know. And also, I will call and email to remind you of what we’ve set up the morning of our appointment.” Oh, I was SO GRATEFUL for such treatment.

Oh what is this post about? It’s to say that my friendships have to change a bit as I recover. I wish they didn’t, but they do. And that I am still ill, even as I get better–and I will want to talk about lots of other things other than my recovery! But I want you to know that I am just not the same, just yet.

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13 Comments

Filed under Life, The Stroke

13 responses to “friendships and illness and healing

  1. I never knew who you were much before the stroke Jade, so I can honestly say that who you are now is what I know and whatever you were, better or worse, makes no difference to me. I see a young woman (yes, still young in life and in spirit) who has suffered a tradegy. And as with any crisis, you are taken stock of what has happened, who you are, what you are, and re-evaluating how to respond to those around you. Everything is the same in some sense, yet it is all new too.
    Recovery is a process, not a destination. We are with you Jade…as close as you want us to be.

    Keep writing to us and you can expect a response. We never left nor will we for we like to think we are part of the process.

  2. This is an awesome post! I’m still dealing with the social fallout from my illness and surgery last year, and some of the problems have been exacerbated by time (recovery seems much more difficult for people to grasp than the acute illness itself). I occasionally find myself lying about why I can’t do certain things–I’ll say I’m tired or getting over a cold instead of saying that I’m just not there yet in terms of recovery–to avoid the flood of reassurances that aren’t totally true though others want them to be.

    We heal on our time, in our own ways. With any luck, you get a few people not trying to push their time/standards, and a greater group that wishes you well but has no idea how to communicate that or understand your actual experience. It’s tough stuff, being stuck in a body.

    Thanks for this post.

  3. Hey Jade. I would love to hang out, if you’re ready. I’ll send you an e-mail.

  4. This is such a moving post. I guess because there are no apparent physical sign of your illness, it’s hard for people to “see” what you need. By writing it and saying it you will make it clear, though, reading through the lines, it seems you may be someone who doesn’t really like to ask for help. I can relate to that.

    I’ve had loved ones be ill in the last year, and though I live on another continent so couldn’t physically be there, what I could do was phone daily. Just turning up. Not saying the “right” thing but just being there. It made me feel better, and I hope it helped them know that I cared.

    Good luck with the coming days and weeks. I’ve been reading all your posts and I think you are very brave.

  5. Hey, Jade, awesome post. Bless your heart. My friendships and social network changed during my illness and treatment; it was weird. I talked on the phone a lot more (I had the time and it was the best way for me to socialize). Your analysis is thorough and somewhat painful to read.

    Do any of these absent friends read your blog?…

    Now I think I’m going to start IM’ing you again … if you are into it.
    Take care and be well.

  6. zditty

    Bless you for simply explicating the condition of being sick in a way that isn’t visible, or that others don’t want to see.

  7. This was a very moving post. I understand exactly what it is you’re writing about; I had a catastrophic medical issue many years ago and the weirdest things emerged regarding friendships etc. I found that I loved all the people who said “This sucks!” and hated the people who said, “Things will get better.”

    Of course I have to say I got all self conscious and guilty feeling as I read this post and was hoping that I was not one of those unhelpful, sucky kind of friends.

  8. This post is beautiful. You’ve articulated the feelings you are having in a way that is meaningful and artistic. Thank you so much.

  9. mel

    *hugs* That’s all. ps. I hope I haven’t been suckingly optimistic/annoying Pollyanna. I know you’re going through a tough time. Just know I support you.

  10. Your feelings are valid. Many people don’t seem to sympathize with hidden illnesses such as memory loss, mental disorders, etc. People feel like you should just “get over it” or “try harder” or who knows wtf. I feel for you. I can’t keep up with my life (mailing bills, returning calls, etc.) even without having my memory screwed with so I can’t imagine how difficult it must be for you. *HUG*

  11. Like everyone else commenting here, I hear you, even if the experience is only one I understand by mapping it onto something else. What you describe reminds me of how people regard one who’s lost a parent.

  12. Ga,h, ended sooner than intended.

    Anyway, people are weird. That’s their best and worst quality. But hang in there, and you’ll be less ill and more just regular-old-weird like the rest of us in a while. I’m still looking forward to that visit, someday, when you’re feeling more stabilized and, of course, when we’re both on the same part of this or another continent.

  13. Pingback: What is the question you ask yourself « Writing Under a Pseudonym

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