Ghost girls

Supposed to be feeling thankful, and right now, I ain't feeling it. I ain't feeling anything, honestly, besides jealousy and .. longing. All of the family posts at this time of year, and it hurts some that I don't have the family I want.

I'm going to let you in on a little secret. Back in June, around my birthday, when all my cousins and friends were turning up pregnant (again), and my littlest nephew was being all toddlery up two hours away from me, and I realized that this fall would be the first time I would not be participating, in an every day active sort of way, in the raising of a child, I felt an overwhelming sadness. It was horrible: because I was happy for them - some of them worked really hard to get to this point, and others were just so excruciatingly happy it was catching - but I was so sad, for me. I am still so sad, for me.

One of my oldest friends has been doing IVF for about a year now, with no results. She's discouraged, but not completely, and she and her husband have decided to give it a rest until February, just to have some space to breathe. She and I have talked about how hard it is to want something and feel like you're never going to get it, and I think we mostly understand each other, but not completely. Our situations are the same, in that we want kids, but our bodies just aren't able to provide them right now, but in almost every other way, our lives are very different: She has a high-paying, successful job, and a husband, and two houses, and I barely make it to the kitchen to feed myself some days, haven't even considered dating in years, and I live in a room (and a half, if I'm being honest) at my parent's house. So we can both be disappointed about that one specific thing together, but, for the most part, I feel like she doesn't get where I am coming from, and I know she feels the same about me - she's actively trying to have kids, and is finding it doesn't work, whereas I haven't tried once, and can't know if it would be as easy for me as it seems to be for teenagers the world over.

I know my sisters want babies, and that there's stuff keeping them from having them, and when we've talked about it, we can sometimes get on the same page. But the response I get most often is something along the lines of "How can you even be thinking about that right now?" And I don't have a good enough answer for that question, really.

So, back in June, like I said, I was really really sad for a few days; it just seemed like I've been waiting for things to get better for so long, and all that waiting had really gotten me was older, and fatter, and sicker. I mean, I've been proactive - I've done the things the doctors tell me to do, but ... it just hasn't felt like I've done much of anything, you know? So after the being sad, I made a decision: starting in September, which was when all the kiddos I usually have around me would be going back to school, I would FULLY commit to me: I would push this 'getting better' thing for all it was worth.

This is probably a good time to tell you that this is something that happens fairly often: this cycle of "Full Court Press"/"Shit this isn't working, what am I doing wrong?"/"Why the hell don't doctors know anything that actually helps me?"/"Fuck it: I'm not going to the doctor again unless I am on fire." The results have been, to various degrees, semi-positive, mostly negative, completely hellacious, and/or neutral to the extreme (as in nothing freaking changed). The best full court press I ever did was right before I went to college, and the doctors diagnosed the orthostatic intolerance that was making me pass out. They gave me the wheelchair, and meds that worked (for a little while), and things were on an upswing. That upswing only lasted about 5 months, and then the meds stopped working, and I've been stuck in the chair ever since. The worst cycle of complete nonsense was when I started doing PT while I was in college, and it was so exhausting and debilitating that I had to drop all my Monday classes, even though I was taking PT on Fridays: I would still be too worn out to attend them, and barely made it to any of the others during the week either. Luckily, I started this right at the end of a semester, so the teacher didn't mind the absences so long as I did the coursework, and then I crashed so badly that I was stuck in bed from the beginning of May until the end of August that year. I literally got up to use the bathroom, and that was it. It was not a fun summer.

But still: full court press, because the thing I want most, in my whole life? Is a child. That's all: I want to be a mom. And I know that in order to be a mom, I can't be this mom ~ which isn't to say I have to be healthy and fine and normal... I know that's never going to happen. But I can't take care of me right now, so adding a baby to that isn't a smart choice. So I was going to commit myself to making a whole lot of real positive changes, and finding out what the hell I'm not doing that I should be doing (including, and this is one I HATE to even consider, but PT, again. Because they swear that water PT is good for FM, that it works and doesn't wreck you. And I don't know if that's true, but I won't know if it works for me unless I try it, right?)

But then: September. September 1, my last full weekend with the kiddos, and I fall and hurt myself so badly that I am barely functional for the entire month. And a half. And my sister-in-law starts her chemo, and I'm trying to do the supportive thing, semi-long distance, but I know I'm not giving it my all, because I've only got half as much to give right now.

So we're halfway through October, and I'm starting to re-emerge from my injury seclusion, and this doctor tells me I may have diabetes, and that doctor tells me that I don't have diabetes, but I might have it soon, and both of them tell me to see a nutrionist who wastes four hours of my time trying to explain how to read the caloric counts off the side of the box. And I am left pretty confused, but trying, and then, all of the sudden, completely unable to eat. And throwing up, and now it's the goddamn flu, and this is what I get for not getting the flu shot, but I got the flu shot last year and still had the flu, and you know what? This doesn't feel like the flu, because my FM isn't any worse, because I don't have a fever, but food won't stay down, and how can I count carbs, when the only thing I have been able to keep down for 5 days is mashed potatoes? Screw carbs: eat potatoes, they don't make you puke.

So then I eat potatoes for three weeks, bringing us into the middle of November, and it turns out it wasn't the flu, but probably my gallbladder. Or my gallbladder AND my liver, which has decided to act up again, after 5 years of silence. And then Mum is in the hospital, and parts of her are falling apart too, and I don't know how to help her with that. And now it's the end of November, and the liver guy can't see me until March, and I have achieved an absolute zero on my "making strides/full court press" agenda, and actually have more things wrong with me than before, and more people to worry about than before, and I am definitely onto phase 2: this is complete and utter bullshit.

This is complete and utter bullshit. I want to get better. I want to build a family. I want to have all those Christmas mornings and temper tantrums, homework hassles and squalling, red-faced baby nestled into his mother's arms at the hospital photos. I find myself, in this season of giving thanks, not constantly thinking about the things that are missing - not even daily thinking about them - but feeling they are missing so acutely sometimes that I want to burst into tears.

My grandmother asks me how my cousin's youngest is doing and I tell her about his colic, she replies "I'm so glad to have those days behind me" (she raised 9), and all I can think is "Will those days ever be ahead of me?" Mum's in the hospital, and even though I know it's not serious, I start to think... what if I keep waiting and all the people I love aren't here to see me finally get there? Dad, in his extreme melancholia while Mum's in the hospital, likes to start conversations with "Well this person died right when they were achieving their dream" and "You know, I think it's a real tragedy that you can't have kids: you'd be an awesome mother." I can't seem to just take the compliment and let the rest drop - it crawls inside me and echoes: will I never be an awesome mother? Will it be a tragedy, for always?

It's not all the time, this ache, but it's there, and so deep sometimes it throbs: I hold my newborn (2nd/1st once removed) cousin, and stroke his cheek, and have to turn away so nobody notices I'm crying.

If you want something, go after it. That's what everybody says: You have to have a plan to achieve the things you want in life; specific goals and ways to meet them.

I have the goals, I have the things I want; I just can't figure out the plans, the steps, the hows. For me, it seems, there's more and more obstacles, and less and less clarity. More things to overcome, and less answers (or hell, even applicable suggestions) on how to surpass them. And I know, I really do know, that it won't always feel this way, that other people have been in a lot worse situations and figured their way out of them, that it won't be the worst thing in the whole world if this is a dream I simply can't accomplish.

But the wanting, right now, is sometimes so strong that I feel like I am sitting with a ghost, of the mother I could be, or the children I could have. The ghost of who I could've been, of the girl/woman I thought I would be: that's something I deal with all the time... I think if you have a chronic illness (or if you have a thousand other things happen in your life), you can get this feeling, this picture of the person you might have been... a ghost of a person past. But this is a new ghost, for me, this ghost-girl of the mother I still could be. And I want to be her so bad, that sometimes, when the image fades, I am heartbroken... to not even have the illusion of her.

And I don't know if any of this makes any sense to anybody but me. (This is that post I've been re-writing so much that the words all sound ridiculous and make-believe, at this point.) And maybe it won't: Not entirely. But I think there must be others out there who live with ghost selves, who deal with the what ifs of the past, and for the future. So I hope that this makes sense to some of you, and explains where I am right now, to the rest of you.