The first time my ulcerative colitis flared, I was finishing grad school and planning to move to a new state. I didn’t want to move, didn’t want to do all my ex wanted me to do, but was too afraid to stand up for myself over anything. I ignored the flare for a long time, resulting in the need for months of steroids and immunosuppressants. Not to mention the pain, just about living in the bathroom and the consequences when I didn’t live in the bathroom.
I didn’t even know what ulcerative colitis was (an autoimmune disease where your body attacks your colon, similar to Crohn’s Disease) when I was first diagnosed. But taking care of my disease – of me, really – finally gave me the nerve to stand up to my ex.
Since then, my colitis has been remarkably mild. It’s flared a few times, but not like before. Every time it flares, or even starts to flare, I take it as a sign. It’s my body telling me something is very, very wrong and that I need to face it and deal with it. It’s also telling me to take some prednisone, but that’s a small price to pay.
So anyway, I’ve been trying to just actually DEAL with my feelings instead of ignoring them, as well as try to take care of myself sometimes ever since this disease hit me 15 years ago. And it’s been working. I take no maintenance drugs, monitor my eating only a bit and spend a lot of time writing. But I still always feel like the threat is there. Like if I fuck up badly enough, I’m gonna flare.
Lately I’ve been trying to pull myself out of this situational depression. When I got a horrible case of strep and a sinus infection last week, I wanted to crawl into my bed and not come out. When I finally got on antibiotics and read the warnings on the label, they included: “May cause colitis for up to several weeks or months after ingestion.” Okay, I thought, this is it. I checked my prednisone stash. I put all my new magazines in the bathroom. I wrote out the kids’ schedule so it would be easier to find helpers for all the driving.
And…I’m not flaring. I’ve had a few issues (sorry, I’m trying not to be graphic, though that’s pretty difficult when discussing colitis) but no pain, no dire emergencies, no hours in the bathroom. I AM OKAY.
When I started Band Back Together, it was sort of a nebulous concept for a blog. Most group blogs I’d ever seen were strictly controlled and stuck to one subject. Or they weren’t controlled – or worse, forums – at all and Internet Mole People (my word for trolls) abounded. And having the resource pages available for the broad range of categories, well I hadn’t seen that either. When I had to explain the concept of the blog, I couldn’t.
I just knew that Band Back Together was going to go somewhere, I just didn’t know exactly, well, where.
On a Monday in the middle of September, Band Back Together was launched. I’d put out a call for some stories the Friday before so that the site would have some stuff on it initially, hoping that filling it with other stories (besides my own) would make people feel more encouraged to submit. It was hard to explain that the site wasn’t another Superblog of Bloggers. It was just, well, us.
I think I slept a total of six hours that weekend, trying to get the site ready for the launch.
We launched and the server crashed and burned. I had to frantically scramble around to get a new one set up (whatever that means).
I’m not a numbers person, but I think that you should see this:
In the past 2.5 months, we’ve published 460 posts (there are 25 more waiting to be published).
We have moderated and actually published 2,600 comments.
As if those numbers aren’t staggering enough, here is where my mind is truly blown.
Are you ready?
Just. Holy balls, Pranksters:
486 people.
486 people have signed up in 2.5 months to WRITE on this site. 486 people have signed up to pour their heart and soul out onto a blank WordPress document, exposing all of their secrets and letting their demons, at long last, out.
Four-hundred. Eighty-six. People.
Those are the people I can measure. The people who have bothered to take the time to fill out a profile, even if they’ve never been able to spill their words out through their fingers. They are here. Youare here.
There are others, of course. Those of you who read silently, tirelessly in the background, sending prayers and love to the writers who write on this site, which is really your site, every day.
Band Back Together may have once been my site, but it is no longer, which is precisely as it should be. This was never meant to be my site. This is not another tired Super Bloggers site where I sit around with my friends and tell the same old shit. It’s so much more than that. The site goes beyond everything I ever expected it could do.
I’m honored to be a part of this site and I am humbled by each of you. Every comment matters. Every word you write is read by someone else. Your stories matter. You matter.
I forgot to add that Band Back Together has been the best therapy for me I have had in YEARS! Not only has it set words into the universe that I have been dying to say, it also made me realize I am not alone. I will forever –eva –eva applaud you for this.
And I love (and post at) Band Back Together. I think it’s a great site and has so much potential to grow into something AMAZING.
I lurk around on Band Back Together almost every day. There are so many beautiful stories there. I feel that it really is making a difference in people’s lives.
I LOVE Band Back Together! TY TY for starting it. I just started my own blog last week. And Band Back Together is the reason. I realized I liked getting my feelings out. I liked writing for me. It helped me. I like telling my stories and being humorous. I also like telling my dark stories. So TY again. But most of all I LOVE the community of Band Back Together. Everyone there is so supportive and caring. People need that. Especially during the dark days.
There are more, many more, just like it.
I did not write them myself. Nor did I pay anyone to write them. I just thought you should be aware. It is your site, after all
We have a Facebook Page we have Networked Ourselves on their Networked Blogs AND we’re on The Twitter.
Just, you know, let people know that Their Band is ready for them to join, okay?
And in the meantime, WRITE HARD, Pranksters, WRITE HARD. Can’t wait to see what happens here in 2011.
(We also have shirts.)
Update (I’d written this post on Saturday): I wanted to thank everyone who has taken the time to tweet and promote their stories and others from their personal Twitter, Facebook profiles and blogs. I think that seeing stories connected to real people – real people that you know – I think that really helps to make each of your stories real. And you ARE all real, I think, unless you’re actually robots, in which case, WELL PLAYED ROBOTS.
The outpouring of support in the past two days has been tremendous. You continue to amaze me.
Not going to be happy and light, right? Well, you just never know.
This is my 5th Xmas without my love. He was a Xmas maniac, loved everything about it. Our house was lovingly dubbed (by me) the Xmas whorehouse, since it was so covered in lights and knick-knacks and crap, it was amazing we could even live in it; but we did, and loved it. Each year my husband lovingly put together a CD of Xmas music that we used as our card/gift. He collected Xmas music, you see, and, the more awful it was, the better…he LOVED bad Xmas music as much as he loved good. We had a lot of talented friends, so each year we’d also include one cut on the CD that someone we knew sang. The year Tom died I made one, final CD. It had a few really fun cuts on it, it had to, but it was mostly sad, aching, and a tribute to Tom. I included 3 songs that he sang on it, and every year, including this one, it catches me up short to hear his beautiful voice. I decorate the house and the tree (way less whorishly) and listen to the CD’s and have my self a merry little sobfest, replete with alcoholic beverage of my choice and a box of Kleenex.
It’s very hard on our son too. I think this year has been a little better because he is working at something he loves, and is working a LOT of hours. When he gets home though, he tends to close himself in his room and play piano, mostly sad, indie dirges he either writes himself or has learned to play. It’s good, it’s how he handles his feelings.
He’s the one who actually puts up the tree and lights it. That used to be Tom’s job, and then I’d decorate. But now it’s fallen to the wonder-boy, and he bitches and moans all the way through the process; his own little sobfest.
I miss him. I miss him so very much, more than I can express. He was my guy, and there is a vast, gaping hole where he was.
And so often I rail against the unfairness of it. It is so unfair that MY husband had to die! It is so shitty that MY kid has to live without a father, had to be a teen without a father. On and on and on…I could go on forever about the unfairness of it. About the goddamn WHY-ME-ness of it.
Lately, however, there has been this little, insistent-but-kind voice in my head asking me “why NOT you? What makes you so special that bad things aren’t supposed to happen in your life. Look around, look on this board you’re writing on, everyone on here has earned the right to SCREAM why me! Why are you not supposed to be going through this? Who of your friends would be a better choice?” maybe it’s just insistent and not so kind, that asshole voice!)
And, I’ve gotta say, I’m starting to listen, at least a little bit. I’m trying to measure my bitterness by tsp vs. tbsp. I’m looking around and seeing that others have it bad too, maybe worse.
I am sad still…grief doesn’t go away, it just is. Xmas is a hard time for me, and then in January it’s the dead date, so… I miss him. I’d kill to have our old life back. That’s all the truth, and has been for the (almost) 5 years he’s been dead.
But the house looks beautiful, and my siblings and their kids will come over on Xmas Eve, as usual. And I have a wonderful son and a great present for wonder boy this year that I’m so excited to give him. I had the best husband and the greatest love that I could ever wish for…why not me for all of that too?
Because that little voice is also there to remind me of the good things, if I listen.
And that’s my Christmas post, and with it comes hugs and love and peace for everyone here on Band Back Together (another one of the good things I have to remember).
You had been my friend for 13 long years when you raped me.
You were my best friend’s husband, my son’s god-father.
You were someone I always trusted and could count on.
That one fateful night we were hanging out at Downtown Disney and I got drunk I told you I didn’t want any more, but you kept buying shots. Looking back now, I see this was your plan. I passed out on the way home, only to wake up with you on top of me. I tried to push you off, screaming NO and fighting to push you off me, but you just covered my mouth and told me to shut the fuck up and that you knew I wanted it too.
I passed out again.
The next thing I knew, I woke up in the morning next to my husband. I knew what had happened the night before. I heard your wife out in the kitchen with your kids and my son.
I tried to forget, tried to pretend nothing happened. I tried to go on with my life, but my marriage fell apart for various reasons.
Years have gone by. Six to be exact.
Then I get a phone call from your wife. She is crying and upset. She fills me in on the past year, that you guys were having problems. Then she drops the bomb – you had killed yourself.
Now I feel like I can’t tell anyone what happened. To tell your wife, one of my closest friends, would ruin her and tear apart our friendship. It has been too long to tell anyone else. So now I must live with this.
You have forever changed me. I can’t trust people anymore, even those closest to me. I am glad you are gone. As selfish as it is, I am glad you are not a constant reminder of that bad moment in my life.
As I’ve been reading through a number of the posts and comments here on BBT, I’ve been struck by the number of people who use faith and religion as a source of healing and inspiration. I also sense there might be people struggling despite this quality.
I hope this message comes across with the simple, positive intention with which I write it.
It’s OK if you DON’T have faith.
I was born and raised/indoctrinated Roman Catholic. I had the simple, uncomplicated trust in the doctrine and the stories that any child has, because I–like all children–was incapable of taking them at anything but face value.
But my life experiences and my questioning nature have destroyed not only my belief in Catholicism, but in the existence of a God, as well. The older I got, the more the placid off-the-shelf answers of the clergy rang hollow and hypocritical. I found honesty in those who admitted to now knowing all the answers, rather than trying to rationalize why the real world doesn’t always follow dogma. As comedian Julia Sweeney put it so elegantly, the universe functions exactly as you would expect if there were no God.
To some, this is a nihilistic statement, but to a skeptic, it is a positive affirmation in which we take strength. And–are you ready for this? Brace yourselves–I’m MORE at peace now than I was when I believed in God.
Now that I have left behind a belief system that did not work for me (and has failed countless others throughout the centuries), I now turn to means of self-healing that actually WORK.
I no longer see depression, self-loathing, and shame as the reaped harvest of sown sins. I see them as medical and psychological problems for which there is medicine and counseling available. Whenever I do wrong to another person, I no longer seek the sanctity of the confessional; I seek that person’s forgiveness. It’s more satisfying. I never did find comfort in prayer, especially Catholic prayer (every time I hear the word “rosary,” my eyes glaze over). Instead, I find great peace in the meditative and physiological healing of exercise, namely cycling and, more recently, running. I no longer seek answers in an ancient text which cannot provide them. I seek comfort in my great friends.
The stories I have read on this site have moved me sincerely to tears. I admire the resiliency of those who have overcome trials that would have broken me. To those who are struggling, I have a simple plea: take comfort in good people. It is the most soothing formula I have ever found.
