nostalgia


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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Headless cemetary statue, no icon. Last year I swore I’d know how to do this by the time it came up again… don’t you guys think the above would make an awesome disability blog carnival icon?

Last year’s carnival wasn’t quite about birth, just yet, and appropriately this year’s tackles the subject of death from one of the most death-shy people you’ll ever meet. As I mentioned recently to a friend, I’m that life-at-all-costs jackass who harumphs when someone decides they’re too goddamned tired for their fifth round of chemo, who has made sure everyone around me knows yes, I would too want to live like that, and who has no patience for the idea of bowing out gracefully so as to avoid being a burden. I’m all about being a burden, as my husband and children will attest.

Nonetheless, I have a death fascination of sorts. For a long time, I thought quite a bit about becoming a funeral director (although I don’t think I have anough of a grasp on the realities of that particular job) and half of studying religion is studying how to die.

The other half, at least presumably, has something to do with spirituality, which is another theme for this Carnival.

Death

Spirituality.

End-of-Life “issues.”

Most of the the disability bloggers I’ve read have, with varying degrees of eloquence, had to tackle those issues, and on the whole have managed to do so with grace, honesty, wit and sometimes anger. In their own words, then

It isn’t nice and sweet, this carnival. To begin, we’re going to take a look at the case of Esmin Green, who, as Day in Wshington reminds us, had a name other than “mentally ill woman.” Harlan Ellison once said that no-one should go into the ground with too few words spoken, and Stephen Kuusisto of Planet of the Blind has a few to say about Ms. Green’s death. I thank him.

I don’t think there are enough words for the death of Harriet McBride Johnson. Certainly, the ones that occurred to me seemed trite and inadequate–“hero,” “inspiration,” “courage”–all true, but a bit too telethon-ese for that particular warrior. Thus, I’m going to let Kay Olson at the Gimp Parade speak for me, in her wonderful tribute to Harriet’s life and work.

In Secondhand Smoke, the issue of disabled lives continues to be debated in a hot discussion about Delaware’s proposed resolution protecting cognitively disabled people from euthanasia–and an argument about the term “brain death” (and how it is often confused and conflated with static encephelopathy and PVS) follows in the comments section.

End-of-life issues come to the fore as cherylberyl blogs her ambivalence in a post on disaboom called Would I Want to Live? I really like her style of writing, its very young and fresh without being cloying, and she puts a lot of things that I’ve thought myself in a calm and simple order.

In her raw and honest letter, Ruth at Mom’s Musings looks at how some of the same questions can be asked at the beginning of life, and how those in authority might not be ready to hear the answers. This one is a must-read; I’ve been hoping to see more parents of children with disabilities participate in these carnivals. Ruth is a wonderful discovery.

Another post relating to children: from Adventures in Daily Living, an imaginary phone call that tells the whole story, Meanwhile, Kristina Chew at Autism Vox asks the hard, but essential, questions about “independence” that will shape her son’s future. On the subject of childhood, Disability Nation takes a look at the new “disability dolls.” For the record, I like them very much. I don’t have an ideological explanation for that, I just… like them. It’s a doll thing, I suppose.

Two post by Bint at My Private Casbah are of interest to the topic. In Don’t Call me Differently Abled, she discussed how the saccharine euphemizing (my term, not hers) in the Differently-Abled label actually depersonalizes disabled people by refusing to acknowledge their reality. Also, in a post on Meals on Wheels cutbacks, she gives a harsh dose of reality about the life-or-death need seniors have for these programs.

Emma at Writings of a Wheelchair Princess has written specifically for this carnival, and has done a marvelous job. Her post on the Three D’s is extremely powerful, and includes a wonderful quote that she (rightly) feels is relevant to this entire carnival.

At Touched By an Alien, Laura affirms life, with a post on the best time of her life. Something about this short entry brought home to me exactly how evanescent any “best time” really is–another reason I decided to host this carnival, I suppose.

Paula at E is for Epilepsy also agrees that one cannot learn to die who has not learned to live (yes, that’s totally backwards, remember this is me putting together a late blog carnival while trying to read about redaction criticism) and for Paula, education is the key to a life well lived.

Frida Writes has a post on how issues of sexism affect women’s health and survival, both in the diagnostic process and in their actual survival rates. Women, she points out, are more often told to “think positive” and at the same time often have their symptoms dismissed as being all in their heads. I’ve experienced this myself; many of the female disability bloggers I’ve met (particularly we sickies) have a long history of being patted on the head and being treated for depression, only to later, when the indisputable facts of illness are laid out bare, be told that our positive attitudes will make all the difference.

Elizabeth McClung at Screw Bronze has decided to tell her positive attitude where to go in Angry, one of several important–and immortal–posts she’s made this month. I have to include more than one Elizabeth link here, because the carnival also needs her Letter #1 on Dying, which includes, in the comments page, a startlingly insensitive but genuinely-felt rant on giving up from yours truly–Elizabeth may be a boxer, but I’m the world champion in unsolicited advice for my weight and size.

None of us, whatever decision we make, are taking the easy way out; if there is one, I’ve yet to find it. One of my favorite blogs, I Trust When Dark My Road, contains a recent post “Longing for the Fleshpots of Egypt” about despair as disability, and just how elusive that “easy way” really is.

I include Pentimento’s post on Margaret Sanger, the culture of death, and individualistic spirituality, because the ideas she expresses touch on many of the things I see in the other posts included here. While not disabled herself, the author of this blogs has confronted loss with both gracefulness and grace. I don’t expect everyone to agree with her summation of the New Age movement or her appraisal of Sanger, but whatever one’s political, social or religious beliefs might be, the issue of eugenics in modern culture is one from which people with disabilities cannot hide.

I’m closing this carnival with a post on the funeral rites for Emperor Norton. Although the piece touches on Norton’s disability, asking why other mentally ill San Franciscans were locked away while an attempt to have the Emperor involuntarily committed nearly had the city in mutiny–it isn’t the full disability-studies treatment that Norton deserves. Maybe one of us will write that one.

Thanks to all of you for letting me host again. This isn’t quite the carnival I wanted it to be–I wanted something of my own here, and I wanted a chance to really delve around the blogosphere finding hidden gems–but school intervened, and I hope I haven’t disappointed too terribly.

I just saw a friend of mine off, taking a nice open-moonroof windy evening ride down the West Side Highway. She’d come up to help me get through this last attack. We hadn’t seen each other in ten years.

One week ago, I did the thing that everyone is always saying to do, rule number one, don’t be afraid to ask for help. I did. I was at the end of my tether. It was the middle of the night, the pain was really bad, I was in The Chair (that’s the hideously uncomfortable armchair I get stuck in when I’m ill) and couldn’t get up, my husband was on Round Thirty-Five or so of the Dicked-Up FMLA Drama he’s been dealing with at work, and I had no clue whatsoever how I was going to manage the week, go back to school, or get those damn steroids, nevermind simple things like eat or take care of my children.

I put out a Distress Call. Maybe someone reading this even got it. A few sentences, a BCC to the entire “friends” list in my address book. Which resulted in some expected and unexpected offers of assistance, some from pretty far away.

I was terrified about the idea of having someone to stay in my house. I don’t really have friends, really… or rather I do, but not in the “come to my house!” sort of way, more in the I-commented-back-on-facebook-last-month-so-you-must-know-I-care sort of way. I actually met this friend of mine, Miss X, when we both were little La Leche League punk-rock chicks, with our scruffy soulful babies and copies of The Continuum Concept. We met via a parenting email list and immediately bonded as the only non-older, non-upwardly-mobile parents on said list. We met up in an equidistant city with the kids, and kept sporadically in touch. Fast-forward a few years, some really bad times in both our lives, MySpace, and a phone call or two. And then, she was offering to get on a bus and come two states over to help me out with the kids while I had steroids and got better. What’s even more surprising is that I said yes.

For the past few minutes, I’ve been trying to compose my statement of gratitude, because while the help was priceless (and–most rare and wonderful of all–unobtrusive) the simple act of friendship was stunning. Thank you. For three days I shared my space while recovering, and I couldn’t in a million years have imagined that would have worked out.

I was reading Elizabeth’s recent post on death, which struck a chord with a lot of people, and it got me thinking about this whole blogging thing, which I do on rather a smaller scale than a lot of disability bloggers but enough to now “know” people that I don’t know in real life who, seemingly, care enough about me to worry and offer good wishes. And I wonder sometimes if part of the compulsion to not only keep writing but to keep reading, to see what everyone is doing today, is about. I want someone to know if I let go and slip under, if Elizabeth does. I want it to be important enough for someone to say hey! where is she? can I do something? And yes, I suppose if that means I have to join the human race for a while, then so be it.

Save me, O God,
for the waters have come up to my neck.
I sink in deep mire,
where there is no foothold;
I have come into deep waters,
and the flood sweeps over me.

I’m not very good with people. But if this does happen to me, I want someone to see.

Today is the third day in the trial of Karen McCarron. I wrote about Katie a few months ago.  Her story hit me hard from the moment I first heard it, not helped by the fact that Katie looked an awful lot like I did at that age.  Like a lot of people, I’ve felt the anger well up in the back of my throat when I’ve heard some of the things Karen said about her daughter.  I’ve argued the point on forums and with friends that to use this tragedy as an example of how hard parenting a special-needs child can be is simply horrifying.   

So I really didn’t expect my reaction to the trial to be what it has been. 

I am finding myself very, very sad for Karen McCarron.  The more things I hear about the day she killed her daughter, the more the actual words of her confession are made public, the more I can’t seem to bring up anything more than a terrible pity.  She did a terrible, irrevocable thing, and she will no doubt never live anything remotely resembling a normal life again.   A fundamental belief I hold, which comes from Buddhism but contains within it the essence of what drew me to Christianity, is that the spiritual salvation of humanity is an “all or nothing” proposition.  There can be no peace or enlightenment for me, for you, or for anyone that does not include this woman.  It is not for me to choose.  Somehow it comes close to explaining why I hide in the house most of the time: at this moment I can feel the love that did not exist between Karen and her daughter like a terrible personal loss… as though something has been taken from me.  My barriers are really, really weak, which is something that having a baby will do to you, and I need to step back, take a little time away from the world.

This is not something I can really understand or express, but this evening, for the most part, I simply find myself wishing Karen McCarron a peace that I know she is unlikely to ever find.        For Katie and for Karen. 


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.

I’d really kind of managed to avoid thinking about it until I read the post “Worries” at No Time for MS, which raises the question of whether one ever really forgets the anniversary of their diagnosis.

This time last year, I was taking a summer away from theology to do some Japanese language-and-lit work at Queens College and the Japan Society. It was really fun, the sort of thing that I’d intended to do for a while and figured I’d better do while still an undergraduate–I would need to get the language skills sorted out if I wanted to go into Buddhist Studies after graduating, and what better way then to spend a summer reading the tale of Genji and volunteering for a cultural organization.

It didn’t work out, naturally, and I spent the 7th of July recovering from hospitalization, diagnosis and steroids rather than at the Japan Society’s tanabata celebration with my daughter.

I think, if I were wishing for something right now, that I’d like to have another, less depressing association with this time of year… it’s a little too cloudy for stars, but I am kind of hoping that I might be able to meet this baby sometime soon. How about tonight? Or tomorrow?

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