Friday, May 01, 2009


For my BADD post, I'm updating/editing a previous post about chronic illness and friendship, just in case you're a regular reader and this sounds kind of familiar. Happy Blogging Against Disabilism Day, everybody. Please head over to the Fishy's place, and read the awesome entries.

I spend way too much time thinking about the past. I remember the me that used to be, the me that told people everything, that had a wide circle of friends I could call, in tears, whenever I needed to, and I wonder when I closed myself off, I wonder if this is just part of growing up, growing old, or if there’s really something wrong with me now and I wonder what I’d have to do to let other people in again.

From Princess Nebraska

One of the greatest challenges of living with a chronic illness is the sense of isolation it can bring. It can be devastating to suddenly (or not so suddenly, depending on the situation)find yourself in a place where nobody else seems to understand, where you have nothing in common with those around you, where you are left facing an illness - and all of its many challenges - on your own. I was 15 when my illness changed my life forever, and almost immediately, I began to feel disconnected from my friends and peers - but by experience rather than time or distance.

In high school I was different because I didn't date or go to parties. I never drank or smoked pot (the norm at my high school, anyways), I couldn't drive, & I didn't skip classes to get pizza because I knew I'd need the sick days for actual sickness. I missed the prime gossip hours - lunch, study hall, walking home from school - because I only showed up to go to classes, and then went home and crashed, or I was homeschooled (when things were really bad). I had to stop dancing, and those 'friends' disappeared from my life immediately - I can remember showing up to the next year's recital - the recitals I had previously felt like I owned, the recital where I was supposed to finally have earned the right to a solo - and feeling like an intruder, feeling worthless & forgotten. I had no enemies, and managed to maintain one or two close friends, but we still had spaces between us - inside jokes I didn't understand anymore, trips I couldn't take, heartbreaks I couldn't nurse them through with cookie dough and sleepovers.

During college, things were much better - living on campus brought me independence, brought me a community of girls who bonded with me over papers and boredom, the frenzy of finals and the loathing of lesson plans. I loved them, and they loved me, and they somehow - amazingly, to me, it seemed - managed to understand who I was and that I wasn't just this weird combination of illnesses.

But there were still things that branded me as an outsider - I went home on the weekends because the sensory overload in the dorms was too much for me. I didn't have boyfriends who broke my heart or hangovers that lasted two days. My wheelchair accessible dorm was fine, but the student center, the theater where the plays were held, the alumni center were committees were formed, the neighborhood restaurants were all off limits to me. When my friends would plan their birthday parties, they'd always include a stop by my room: we'd take pictures, I'd give them my gift, they'd preen, I'd send them off for a night on the town. These pictures are bittersweet to me now - having friends who cared enough to come by at all is sometimes overshadowed by the fact that they were on their way to a night full of fun and I was on my way to bed. (4 years of college and maybe 17 pictures, all following the same pattern - the group of us sitting on my bed in my dorm room, them dressed to the nines and me in my pajamas.)

After we graduated, the gap began to widen again: my friends started getting married almost immediately, a few of them had kids right away, and they all had jobs. They all got careers and husbands, eventually homes and kids. I wound up with doctor's appointments, random rare diseases, a datebook filled with medical tests; fabulous kids that I play auntie to, but who go home at the end of the day, and the same twin bed I've had since I was 16.

(I know that there's more to my life than that last sentence, I'm just trying to make a point about the gap I've been feeling lately.)

"What are you doing now?"
"Where do you work?"
"Are you seeing anyone?"
These are all routine questions, to which I have very un-routine answers (at least for my age group). Most almost 30 year-olds work. Most almost 30 year-olds date or are in serious relationships. A lot of them have kids, mortgages, cars to buy, bills to pay.

I do have a lot: this isn't about that. I know I have a lot to be grateful for, a lot of happiness inducing, valuable people in my life, a lot of interesting & intriguing ways I spend my time... this post isn't about me feeling sorry for myself (or, at least it's not meant to be), it's about how hard it is to be connected, to stay connected to people you care about when you have so little in common.

It's about how strange it feels to have no 'real' answer to everyday questions - when you're friended on Facebook by an old acquaintance who asks how you are and what you're doing now.... why it's so difficult not to just skirt the truth, to not want to just make up some better, more acceptable answer. It may be by necessity that I'm not working, it may even be a blessing that I am able to devote so much of my life to being with the people I love, but that doesn't make it easier to say that I don't have a job because I'm too ill to work right now.

It's about how left behind you begin to feel when all of your friends are doing adult things - hell, when your little sisters are doing adult things - and you still feel like you're living the same life you were living 12 years ago. I did go to college - it was an unbelievably intense challenge that I am so proud of myself for conquering - but I got so sick afterwards that I couldn't put it to use, and now, 8 years later, I'm still here, still stuck.

So it's hard to be the one to pick up the phone and call one of the girls from college and say "Hey, come and visit me: let me just let my parents know first."

The Internet - particularly the blogosphere - has been really helpful for me with all of this, helping me to find new peers, to connect with other people like me. Peer groups need not be just by age, after all - having friends of all ages who can understand your experiences can be vital too: I've bonded with readers, with photographers, with aunties, with other young adults with chronic illness. Having people who have faced some of the same challenges in connecting with the 'real' world, who feel the same sort of disconnect has been really important for me and has, at times, kept me from becoming completely isolated from non-family people. It's one of the things I like best about the blogosphere - there seems to be no end of blogs written by outsiders, by the non-cool kids, by the uncliqued masses (Sure, there's some clique-y-ness every now and then, but by and large.) I have made real, true friends online, and I never expected the blessing of that.

It's just that lately, I've been feeling this disconnect between me and my IRL friends pretty keenly: there's been a rash of pregnancies - and second pregnancies when I've never met the first baby in person; my oldest friend (I'm talking 2nd grade here people) is getting married in October and I've yet to meet her fiance, even though they've been dating for 3 years; I'm finding out secondhand & after the fact that there are parties, shindigs,& get togethers that I would usually be invited to (and have to decline) that I never knew about (and I honestly don't know which is worse: the having to decline or the not getting the opportunity to)... It just feels like I haven't put enough effort into these relationships, and they are crumbling around me.

Think about your own life - think about the best friend you lost touch with after high school ended, the acquaintance you used to send a Christmas card to until you just forgot one year, the woman from your kid's little league games that you talked to 3 days a week for 3 summers in a row and now never see - and about how easy it is to lose those ties. Now think about how much easier it would be to lose the connection if one of your friends hardly ever left her house - how quickly you might get sick of inviting her places if she always says no, how awkward you might start to feel about letting her know the good things that were going on in your life if you think she's got very few positive things in hers, how rapidly life runs away with you so that you never have a moment to sit down and put the fact that you're thinking about her into action.

I've been really good at keeping up virtually - I always send birthday cards (almost always on time); I comment on their kids' pictures & send presents signed 'honorary auntie NTE'; I pledge money when they run marathons and donate to the 'in lieu of flower' organization of their family's choice if someone they love passes away. But I can count on one hand the number of times I've actually been in the same room with most of them (excepting Best Friend/College Roommate) in the past 8 years.

So I've been thinking about how to do better at this, and I think the key is not to wait. Not to wait until I feel 'better' enough, not to wait until I feel like I've got more interesting things going on. I'm so horrible at this (we've talked about how I hate the phone. And how I am actually shy in real life and get embarrassed really easily and on and on and on) but I'm going to try not to let myself make excuses. I'm going to write an e-mail this week to at least one friend and see if she can't carve out some time for me. And then I'll carve out some time for her.

Because I do need those people in my life that I can call when I'm sad and need cheering up, that I would answer the phone for even in the middle of an un-Tivoed, brand new episode of The Office, that I get to see the engagement rings of and rub the pregnant bellies of. Because I think I am a good friend, and that's not something I'm willing to put on hold any longer.


Ruth said...

I can relate so much. By the time I use all the assistive devices, do my work, arrange for my care and do all the "disability" stuff, I'm tempted to forget the relationship stuff or get sloppy with it. Sometimes, sadly, I do. But it's a mistake to do that because , even if I do it as well as I can, people understand that a lot better than silence or what looks to them like a lack of effort. I guess , in all fairness, it is that even if I'm exhausted trying to do stuff. Not fair to them.

rachelcreative said...

Thanks for your honesty in writing this post.

Anonymous said...

The internet helps so many people in so many ways. In ways they would have never been able to be part of society. This is why I feel bad when people do not choose to make their web sites accessible. They don't know whom they cut off from being part of the world.

J.J. in L.A. said...

Throughout this post, I kept saying, "Yup." I stopped driving 4 years ago (vision problems) and my social life took a nose dive. Sure, my friends call but their lives are so busy that I rarely see them. I'm so glad for the Internet because I feel like the people I interact with are friends, even if I never meet them in person.

Anonymous said...

Yes yes, how to bridge the divide: i can identify. I often feel like i am making all the effort, and am being "needy" and worry that people are only keeping contact with me out of some sense of obligation.
I have been so surprised by the role and value of online friends - such an unexpected joy and source of comfort when we feel left out and left behind.

seahorse said...

Oh, how I identify with this. Beautifully written. Thanks for posting such honest and heartfelt words.

David said...

Thanks so much for being so open and sharing your personal experiences. I can relate to so much of what you said. Great post.

Anonymous said...

First of all, thank you for the comment on my post. The disability blogosphere really does help, because it help me remember I'm not the only one who deals with issues like this.

And, oh god, so much of this sounds familiar. I don't date, I don't party, I don't do so many things - not because I don't want to, but because I'd be in bed for a week from one night on the town.

So - I don't quite know what to say, other than offering infinite (and very careful) virtual hugs.

Anonymous said...

First of all, thank you for the comment on my post. The disability blogosphere really does help, because it help me remember I'm not the only one who deals with issues like this.

And, oh god, so much of this sounds familiar. I don't date, I don't party, I don't do so many things - not because I don't want to, but because I'd be in bed for a week from one night on the town.

So - I don't quite know what to say, other than offering infinite (and very careful) virtual hugs.

telakalla said...

Thank you for the comment on my post.

You gave me a lot to think about in this post, there's so much I can relate to. I'm glad I found your blog.

Anonymous said...

I am writing a book, if I make a million I'll "Re-enter life" as my pain psychologist so professionally calls it. Even she has no idea. I have MS, I wiggle, shake, fall, make noises, walk funny or roll in a scooter, I've lost my businesses, my house, my roses, my kitties and ended up homeless at 58!

I call it "BECOMING INVISIBLE" a book about chronic illness in the US. Blogging has become my support, my strenth, my friends, my confidants.

I am sooooo glad you found me. Your writing is terrific, keep it up. Stay strong, because all of us here on this site TALKING to you via computers love you.

We are just learning to love ourselves again. You have helped immensly by putting our isolation in to words. Hey, I'm getting back out there again with my trusty little electric scooter I named Mabel. I put a basket on with some dopey fake flowers, and I am going to try taking it on the bus one of these days when I feel really brave.

Don't be invisible, girl! The squeaky wheel gets grease, get out there and squeak! Ciao. Ainslee