photographs


I’d like to start gradually bringing this blog up-to-date, in terms of where I am now.  Where to begin?

Well, I graduated.  With my worst grade ever in (of all things) bioethics, and a fairly decent thesis, and a graduate school acceptance, I graduated and actually made it to the ceremony.  

Here’s my standing-up pic, which is very misleading, for reasons I’ll explain below.

Right.

Now, here’s what actually happened.

I had every intention of graduating in my wheelchair.  Of making a big pain in the ass about it if I had to.  But in the end, I wasn’t sure I’d even make it (total health breakdown before the end of the semester) and by the time it came around I thought that just making a phone call to disability services and asking a few questions would suffice.

Questions like “how much walking?” (Not very much.  Just up to get to diploma and back down.)  There’s a place to sit the whole time? (There are seats set up for all the students, and you’ll be able to sit the whole time.)

All of these answers were true, but neglected to mention that before we’d be allowed into these seats, they’d line us all up and keep us standing while we waited to make the grand entrance.  For forty-five minutes.  Seriously.

To make a long and pretty ignominious story as short as possible, I made it about twenty minutes before trying to get some help, which was too late, and hit that point where there wasn’t going to be any more standing.  Or walking.  That day.  

Crawled about 50 feet, made it to the edge of a planter, and thought a lot about how this was my own fault versus how someone who worked in disability services could not know that the question “how much standing will there be during the graduation?” included the obligatory standing-in-a-line beforehand, and wondering if I’d be able to make it up there at all.  It didn’t look likely.

As it turned out in the end, I did.  I hadn’t made it there alone, after all.  It wasn’t a place I could have gotten on my own, and there hadn’t been a moment of the previous four-OK-five-but-who’s-counting years where I hadn’t depended on someone else’s love and support to carry me through.

So here’s the real picture.

Yes, he carried me all the way up there, and held onto me while I was handed my diploma, and then brought me back safely.

I had other help too, getting cleaned up from the big crawl so I could go up there without looking like the little match girl.

So that’s that.  My love-hate relationship with my alma mater notwithstanding, it turned out to be a beautiful day.  

So as I write about the changes that have happened since, it’s probably worth stopping to remind myself that I continue to not do any of it alone.  And to say thanks.  And I love you.

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I have a whole pile of things that piss me off that don’t bother other people at all.  At the top of the list would probably be someone petting my arm, but I also don’t like cold cereal with milk, white foods, or when people quote The Simpsons.  However, special hatred is reserved for truncations of words.  Those cutesy little shorten-ings y’all so love to do these days?  No.  Prisoners are not being mistreated at “gitmo.”  A bank called “wamu” did not recently, spectacularly, fail.  And I most certainly am not participating in something called (feh) na blo po mo.

That said, I’m trying to do that posting-every-day thing for November.  Because I’m swamped with academic work, I have too much to do, and I get more done when I take on too much.  If the expectations are sky-high, in attempting to meet them I usually surpass what I’m capable of when operating with “reasonable” expectations.  A wildly productive failure, as it were.

This is something I should have realized about myself the instant I got sick.

No matter.  I’m back to the blog and have many, many things to write–all about my year-long spiritual crisis and its possible resolution, my re-dedication academic life, the fact that I’m embracing a couple of “alternative” MS treatments (don’t worry, I still take my medicine) and actually finding it helpful, how I used my wheelchair to build my body back up to a functional state, and how some recent new acquaintances have made me realize that I owe a tremendous debt to the disability community.

This last subject is huge, and I don’t know if I can do it justice.  I’ve now met several other crips or chronic sickies who, for whatever reason, have chosen to be outside the disability community, and their level of debility, of broken-ness really, is simply staggering.  And I know–I know–that I would have been the same god-damned way if I hadn’t found my way here.  The fulfillment of the sick role, as it were.

SO thank you, first of all, Jen.  You were the inspiration.  And thank you Disability Studies at Temple, and Not Dead Yet, and Ragged Edge, and ADAPT, and Katja Stokely and Kay Oleson and Amanda Baggs and Dave Hingsburger and Elizabeth McClung and and and.

My Academy Awards speech notwithstanding, I find myself now on the other side of the fence.

The challenge, I think, will be to extend my understanding, offer options without proseletyzing, and to keep my anger in check.  The anger arises, by the way, when I meet someone who has convinced themselves that a sick person “cannot” or “should not” do X thing–generally something I do–because I experience their defeatism as a direct threat to my own freedom, the freedom I’ve wrestled and fought and clawed to get away from the disease.  So yeah–it gets hard for me to meet someone who not only is not clawing but who smiles patronizingly while intoning what can and cannot be done, without wanting to start slapping them over and over until they get up and stop me.  Because I’d rather see them angry than so complacent in debility.

Over at Multiple Sclerosis Sucks (link forthcoming, it’s a super-cool site) there’s a spiffy little essay about how people who try to tell sickies that “you’re only as sick as you feel!” need to shut the fuck up.  And, well, word.  That is not what I’m talking about  doing.  By all means, tell me how sick you are, and I’ll believe you.  But don’t tell me how sick sick people are in general.  Particularly when you don’t know any, because the community has nothing to offer you, and so you’re the Sick One among your social scene and deeply locked into that role.

I want to start writing again about the pain and anger and sometimes humiliating physical aspects of what I’m experiencing, and I want to do it without seeming like I’m giving up or like I’m “overcoming.”  And yet everything I say seems to fall into one of those categories.

I’m giving up because I accept myself as defined by the diagnosis (diagnoses, now, and I’ll write about that too) and take it as an intrinsic part of who I am.  There’s no “real me” hiding within the illness–it is me.  And the fact that I’ve chosen to live a highly demanding life (physically, mentally) does not mean I’ve “overcome” anything–simply that I, the sick I, have chosen to drag my sick body around in this demanding way, and I have a right to do that.

The world is full of motherfuckers who will tell me I should have the “right” to die, because my life is worth less than a whole, hale and healthy person, but who will deny me the right to push sleep deprivation, exercise, rough sex, whatever to the point that I do.  Because, you know, I’m sick.  And sick people don’t.

Lots more to write, I think.  Happy November.

Phoebe is “due” today.  

Or rather, is 40 weeks pregnant, something of an arbitrary deadline actually, but a perfect time to send her some good thoughts.  She’s having an unassisted birth, something I thought very long and hard about doing, and still think that maybe I should have done.  UC’s are, from my perspective, both beautiful and scary.  It does make me want to send some extra love Phoebe’s way.  

There are manymanymany good-childbirth-type deities out there.  May they all watch over her. 

<img src=”DSCN2385” alt=”” />
description: A photo of me, wearing my sleeping son in a leopard-print sling, handing out flyers at a recent nurse-in… actually the nurse-in so publically scorned by Bill Maher. Douchebag.

I am so utterly beyond thrilled to have found the forums at The Baby Wearer. Particularly because there’s a forum that focuses on wearing one’s baby when one has a chronic illness or debilitating condition (or when the baby does). Apparently, if people can be complete jackasses when they see a relatively young woman park a car with a handicapped placard, that’s nothing to their response when said woman slings a baby onto her back.

The cultural bias in favor of strollers ignores the fact that toting around one of those behemoths would be the end of many a sickie mom. Nevermind the positive aspects of babywearing, which I strongly believe in–it simply wouldn’t work for me to tote around a Bugaboo or MacLaren. My hands don’t grip well enough, I de-stabilize the thing by leaning on it, and mostly because I travel light. Don’t even get me started on one of those bucket seats. I couldn’t even fathom lugging around something like that before I got sick.

Now, my new favorite pains in the ass might be the people who feel that it isn’t “safe” for me to wear the baby. I’d be more inclined to listen to these types if their objection weren’t to the baby’s being safely nestled in the sling, because it’s true that sometimes I feel a little off about carrying the baby, due to arm weakness. Which is why the sling is such a joy. And seriously, if I’m not well enough to sling him, it generally means I’m not well enough to be up and about with him anyway. And supposing the gait problems were to flare up again, well, then I suppose I’d wear the baby in the wheelchair… it’s a pretty common solution to that particular problem, really.

Of course, I’m persona non grata among able-bodied moms who find babywearing “too hard,” because my very existence is a reproach. I have a debilitating, fatiguing illness, and find babywearing as easy as eating. Which basically means that these women didn’t really want to babywear, very much*. It’s like a woman I know, who has lupus and who also works out to a point of dieseled physical perfection that makes me question my sexuality. I don’t claim to know her whole constellation of reasons for working out, but I’m pretty sure that one of them is simply: because she still can. Lupus is a bitch. I’m sure when people moan about how they’d go to the gym if they weren’t feeling so crappy after their long day at work, they don’t have lupus in mind. And yet. Somehow she manages, and probably couldn’t do without it.

Baby care with MS is like that, in general. I couldn’t do otherwise, and the questioning about whether I don’t find nursing/babywearing/nighttime parenting stuff “too tiring” aren’t really relevant to my reality–if you want to help, help me do laundry or something, but please don’t lecture me about how I should be parenting in order to be easy on myself. I am. I just wore the baby through my most recent flare-up, and didn’t feel like a martyr. I do the best I can with what I still have, and I don’t feel I have to give that up.

* Should a close friend who reads my blog think that this is about her, it isn’t. You’ve never given me grief about babywearing, and you’re too hard on yourself in general. You taught me how to use a wrap. You’re lovely.


Image: As pregnant as it gets; the Retired Waif reclining in active labor.
I had had such a series of false alarms, had called my husband home from work so many times, had walked to keep contractions going or had a glass of wine to get them to stop so many times, that unfortunately I can’t really say that I “just knew” that was the day. I’d like to. I’d like to have some kind of bad-ass super-cool psychic-powers birth story as befits me, and the baby, and this awesome blog, and all that. Alas.

I was pretty damned determined that that would be the day, though. I’d been having spaced-out, stop-and-start labor for weeks, you see, and not knowing what to expect was driving us nearly out of our minds. There isn’t any real way to pinpoint the true “beginning” of labor, in this case.  I groused around the house.  He called out from work.  We waited through the afternoon.

I remember the first contraction that nearly knocked me down, though. Laugh if you like, but I was letting my hormones lead the way and baking a cake in early labor (seven-thirty at night or so). My husband was timing the contractions–funny, because I had been quite scornful of his utterly-male desire to time contractions during a homebirth…. (whatever for?) When it happened, though, we both found we really enjoyed the timing and making notes as the rhythm of the whole thing established itself.

My daughter had planned to attend the birth. I left the option open, and certainly had no plans to exclude her, but let her know that the instant things got at all scary, or boring, or weird, she had but to say the word and grandma would swoop her away to be pampered in Westchester. She saw which way the wind was blowing at eight o’clock or so, and made a graceful exit. I’m terribly glad about that–I actually think she might have suffered some trauma if she’d stayed.

The next hour or so were passed with my husband reading aloud (not Graham Greene for once, although The Quiet American once got me through a miserable hospital stay). He’s a marvelous reader, but it became hard to concentrate. It was impossible to either move or stay still.  Our midwife arrived, followed shortly by our doula, at around ten o’clock. The doula brought some white daisies that stand out particularly in my memory. I had chosen her for a doula because she’s someone I see as the opposite of invasive, and also because she’s very pretty, in a calming sort of way. It was nice to see her.

The midwife and doula went to rest, and my husband talked me through labor for an hour or so. At this point I should have realized that a certain amount of shutting down was going to be the best way to get through this; rather than try to do anything I made myself as still as possible and stared into his eyes and listened to his voice. I’d had no idea how to prepare for labor, and I’d later realize that the times I was able to withdraw were the only times I could really cope.

It was a very rapid labor, and felt very out of control. At a certain point I broke away from my husband and stood under the hot shower–painfully hot water was the only thing I wanted to feel at the time, but heat causes some dreadful MS symptoms for me, so I would stand under the shower until I got too weak to hold myself upright, drag myself back to the bedroom, and wait to regain strength to stand under the shower again.  I was unable to simultaneously deal with the people around me and the pain I was in. I spent a lot of time kneeling, with my husband pressing a hot water bottle into my back. That was nice. But there were too many people…

At about midnight, I remember crawling onto the bed, curling up, and closing my eyes.  Somehow, more than three hours passed, during which everyone else slept and I crouched perfectly still, with my eyes closed.  A non-verbal state was the only possible way I could have done it, and in retrospect it’s a state I should have stayed in.  Labor pain was utterly different in this state–I could actually follow the ebb and flow, the swelling and receding, rather than being completely overwhelmed.

The pain subsided somewhat, and was replaced by pressure, not unbearable, and a feeling of heaviness. I slept for a little while–and I remember the pressure growing, getting more intense, and becoming pain again.  I wasn’t ready for it, I started making noises, my husband came into the room and suddenly everyone was in the room.

It was here that I completely and utterly lost it.

I knew I was about to have the baby, could tell that I was about to have the baby, and couldn’t quite seem to make that clear.  The midwife and I got into a completely pointless argument about a hospital transfer, an internal exam, and other things.  I infuriated her so much she stormed out of the room.  I think she knew the baby was moments away from being born and was frustrated that I seemed to have completely lost focus?  I don’t know.

I took another trip to the shower, now beginning to involuntarily start pushing the baby out.  Going back into the bedroom, I was suddenly sick.  Water broke.  I dropped onto my knees next to the bed, reached down to feel him crowning, and was able to deliver his head–and two or three seconds later, the rest of him.

Image: black-and-white photograph of a new baby.

I remember looking over my left shoulder (the midwife had gently laid him down next to me on a towel) and seeing that he was a boy, that he had a funny little beak of an upper lip, and that he was most definitely alive.

Many, many different levels of relief.

Someone told my husband “You have a boy.”  My husband repeated “I have a boy?” with a crack in his voice, sounding like a boy himself.  Sitting on the bed, which I was kneeling next to, he told me later that I looked “very frail.”

So quickly, I had the baby in my arms.

Image:  New baby, new baby, new baby.  Squished face, wet skin, mama’s hand stroking his cheek.

I held him and stared at him.  He wasn’t ready to nurse yet.  The placenta delivered smoothly, I seemed in fine shape,  my husband held the baby while I showered.  I’m so happy I have pictures of those moments.

After the shower, bed.  Nursing, newborn exam, and a few hours sleep before the family started knocking on the door.

If it weren’t for the long wait to go into labor, you’d all be spared my rants. As it is, here you are. Not up to my standard, blog-wise. I’ve made little or no attempt to be funny. I’m lonely, and I need to complain, and I have a blog. That is all.


(Image description: It’s either a poigant shot of very-pregnant me looking pensively into the middle distance, or a pathetic attempt to keep the reader with me through the following bitch-fest by posting a more-revealing-than-usual photo.)

I may not be posting again until after the little one is born. At this point in the pregnancy, some of the standard 9-months-pregnant issues have managed to join up with some of the less-than-standard MS issues, and I’m completely at a loss as to what to expect in terms of pain, mobility, and so forth. Some of this may go away when I have the baby, some of it definitely will, some may get worse, but the unpredicability of it all is the main problem. Other than a trip to see the movie “Paprika” tomorrow, which has been planned down to the last stair-step, I don’t plan on leaving my comfort zone again until some time after delivery.

I’m a little bit angry at the MS-doctors, the National MS Society Website, and the MS-internet-resource-arena right now. Why is that? Well, from what I understand, some time ago the conventional wisdom had it that women with MS shouldn’t get pregnant at all. We were advised to have our tubes tied because we could certainly never handle pregnancy or parenting, not to mention possibly passing the condition on to our children. Labor and delivery were a Big Deal. Until recently, this was what most people seemed to think. Pretty depressing, considering that most women are diagnosed in their prime child-bearing years.

Thankfully, this attitude no longer prevails (well, it does among busybodies and nosy folk, including several less-than-charming friends of my husband who made their own opinions about who should and shouldn’t have children known to him barely days after I was diagnosed, but I’m speaking of knowledgeable people here). I’m really glad that things have changed. I’m glad I can have my homebirth and be seen as “normal” as far as pregnancy goes. I’m happy that this obviously-low-risk pregnancy has been treated as such.

The problem with this is that if you go to any informational sites, buy any books, or ask any doctor, you will now be given a spiel about just how normal pregnancy and MS are. Normal, normal, normal. MS “does not affect” pregnancy. And vice versa. And I’ve been thinking about this, and not only is it not the truth in my case, but I don’t see how it’s even possible.

Why isn’t pregnancy-with-MS described or written about anywhere? Why is it that all I can find is that women with MS have “normal pregnancies” (IE no increased pregnancy complications) with “normal outcomes” (healthy mom, healthy baby) just as much as women without MS. Technically, I too am having a “normal pregnancy.” I also can’t walk. How would significant balance issues be unaffected by a significant weight gain involving a major shift in the center of gravity? What about MS-related spasticity and pregnancy-related leg cramps? How would they affect each other? What would the mobility problems that resulted say about the person’s future abilities to walk? Why is there no information on any of this? Why are pregnancy symptoms completely ignored in the context of how they might affect MS? Will I get better? Will I get worse? Will the balance issues and major leg pain lift a bit after pregnancy? All anyone seems to be able to tell me is that relapse is extremely common post-partum. Fine. But what about the symptoms that have appeared during the pregnancy? Which way will it go after I deliver?

Nothing. No info. Just “normal pregnancies unaffected by MS” (sure, MS symptoms and pregnancy symptoms don’t affect each other at all. Because four months of vomiting is really easy when you have a weak swallow.) Oh, and “increased risk of relapse post-partum.” That’s nice too.

Based on the optimistic “you have MS–but it doesn’t have you!” spiel I got from every-fucking-body when I was diagnosed, there is no way I could have predicted the train wreck that has been that past year. And I officially want to state for the record that I’m really pissed off at pretty much everyone I know. My family have been, in their way, wonderful. However, I don’t know if they can appreciate how spectacularly unhelpful their particular mix of Pollyanna-optimism and Doomsday-unsolicited-advice-giving can be. Apparently, a realistic assessment of my needs and symptoms is “depressing,” so I can’t actually describe what’s really going on but instead have to be endlessly compared to some woman who has had MS for thirty years and “only uses a cane–sometimes!” Meanwhile, making life plans for myself is “unrealistic” and “trying to do too much.”

For an entire academic year, people in my life have pretty much refused to let me explain what was really wrong with me and make moves towards getting proper accomodations set up. At the same time, for the past year every slightly optimistic word I’ve voiced about actually wanting to do something, every flicker of academic interest, every plan for the kids, every post-graduation bit of optimism, has been met with a placating smile and a “don’t you think you’re taking a bit too much on yourself? The important thing is that you be healthy!”

This wheelchair thing is such a case in point. The chair is the Big Symbol for my bunch… probably the first thing I heard from anyone after my diagnosis was some bullshit statistic about how only 20% of people with MS are in wheelchair after 20 years! Nevermind that this probably had more to do with crappy insurance reimbursement and social stigma, as I’ve learned after a year of being fucking housebound. Nope. Wheelchair=Non-Inspirational MS-Failure. Keep doing yoga! That’s what someone sister’s boyfriend’s cousin said! She knows someone with MS and he never needed a wheelchair!

Right. Does it matter that the wheelchair might make help make the difference that keeps me in school? That sheer exhaustion knocked me out of most of my classes last year? Not really. You see, bringing up school brings on the “Now, don’t you do too much!” Brigade. School? Isn’t it cute that I still care? Of course, I need to be realistic. I mean, with a baby and all (Have you thought about how you’re going to take care of that baby? Don’t you think it’s too much for you?).

The net result of all of this is that I’ve been, for sometime now, completely unable to visualize a future that includes me. Not allowed to acknowledge that I need more help than I have to get around, I’ve had to hide away in the house. Not allowed to express hopes or plans of any sort, I’ve done my best not to have them.

Last semester, I had some words with a professor. Well, he had some words with me. (This was not the Man who was Very Sensitive to Air Conditioners, by the way, but another one.) I had not met this man previous to taking his course, and he knew very little of my prior two-and-a-half years at the school. His class met at the worst possible time for me… at the end of the day, after several other classes, and trying to navigate around campus. On more than one occasion I was in obvious pain in his class, for which he would generally single me out and tell me I should go home. I cried, once. Extreme humiliation. You see, I’d done the reading, and just wanted to be there. After that, I tried to hide being in pain, and to be funny.

At the end of the semester, he had a few choice words for me and how I dealt with disability. The choicest, and most-repeated, of those words was the phrase “self-indulgent.” I can’t really detail the entire conversation here, suffice it to say that I was terribly ashamed. I kept apologizing, trying to explain that i wished I’d gotten the chance to work with him before I got sick, that I could have given his class the attention and care that it deserved. If you’d known me before, I wanted to say, you wouldn’t be able to say this. You’d understand. You’d know.

I don’t generally open this line of discusssion, but I started college essentially homeless, doing schoolwork on buses, working a full-time job as a line cook. I could only walk around campus by pretending I was invisible, or the stress of not-belonging would become too strong and I’d become convinced someone would realize I wasn’t supposed to be there. All the wonderful things that happened during the first two years, the academic honors and close work with professors, pretty much stunned me and I still haven’t really gotten over it. Thank God for the confidence I aquired during that time, because I don’t know what else is going to get me through now.

I want to go back in September so badly. But I don’t know how to do it with all these eyes on me, with all this speculation, with all the maybe you should just take a year off, and the I think you’re biting off a bit more than you can chew. Not to mention your problem is not that you’re sick, it’s that you’re self-indulgent. Or the shouldn’t you just take care of your baby, that your chronically-ill ass had no business having in the first place?

Online identies are misleading. It’s easy to be witty and irreverant in an ego-stroking blog such as this one. In reality, I have no idea how to even begin to figure out what I need, how to ask for it, how to do anything other than try to be agreeable, how to stop apologizing to everyone in response to those words my professor said to me last semester. I didn’t tell anyone about that. I don’t know what to do now.

I’m just waiting. I’m taking everyone’s advice and shutting up and just waiting. To have this baby, to see if I get sicker, to see if they’ll let me back in September, to see if I can get the help I need to make that work. I don’t know, right now, what’s happening.

I suppose I could really use someone to talk to.

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