A Bittersweet Anniversary

Exactly twelve years ago I was in Lyon, France. I was researching a novel I was writing and was in the throes of the flare that would land me a MS diagnosis a few weeks later. My legs felt like lead, I could only walk a hundred feet or so before I needed to rest, my left leg was numb and the right side of my face - including half my tongue - was numb.


It was a struggle. I had no idea what was wrong with me, it was cold and rainy and I was staying at a hostel in vieux Lyon, halfway up the hill to Fourvieres Basilica. Because I could barely walk I missed out on a lot - no Resistance Museum or historical traboules, no day trips to nearby wineries - but it was a spectacular trip, partly because Lyon is awesome, but mostly because it was the last of my many travels made before my MS diagnosis. I've traveled since then, and have plans to travel more, but that was the last trip when I was unaware that my myelin was disintegrating.


If I had known then what I know now I would have toughed it out and dragged my lead leg up the traboules shelled out the extra cash to take a cab to museums instead of putting that stuff off for another trip "when I feel better," but hindsight's a bitch and it would have been a waste of the past twelve years beating myself up for not anticipating my MS diagnosis or its effects on, well everything, but mostly on travel.


As I(very belatedly) come to grips with the fact that I am really, truly disabled, I need to silence the voice in the back of my head that says "put this on the list of things to do when I'm cured," and do what I've gotta do. Because, and I don't care how unrealistic this sounds, I don't want to have to adjust my expectations. And, as I finally get around to finishing that novel I started all those years ago, I can daydream about going back to Lyon. It may require extra planning and I may need Hubs' help, but I refuse to give up on my dream of going back, or of going to the million other places I hope to visit in my lifetime.


So take that, MS!

New Year, New Beginning

We talk every year about starting anew and making second chances, but this year I really do have a second chance. See, the meningioma that my oncologist was sure had grown between January of last year and July of last year has actually not grown at all since January of last year. Maybe my head was tilted or the resolution, or whatever, was off in July, but my brain gumball is still gumball sized. My oncologist said, "let's disregard July."



So for all my worry and psych-up speeches - "So what if he has to crack your skull open to get that tumor out? It's right on top. No biggie." - I. Was. Shitting myself.  But now I'm so relieved. Not just for myself but for my kids. Hubs is relieved too, but I was having nightmares of my boys, already the kids with "the sick mom" would be the kids of "the really sick mom" or, worse, "the dying mom." They needed a break and I'm so glad Gumball cooperated.


Another thing my most recent MRI revealed is that I have no active MS lesions. Yay!

One Step Foward

My leg is healing at slower than a snail's pace. My most recent X-ray, taken a week ago, still shows an angry break clear across my tibia, flanked by dainty little spirals extending toward my knee and my ankle. 

My doc sighed and shrugged his shoulders before declaring it "acceptable." So now, after some annoying obstacles from cast to splint to brace, my right leg now resembles that of a Storm Trooper. 

It's an improvement on the cast for sure. It's daintiness, however, revealing some shocking skin that had previously been hidden by the cast. My thigh is peeling like I suffered the world's worst sunburn and my foot... Oh my foot. My foot, still swollen and sausagey(like my leg) is shedding what appears to be shards of Parmesan. No matter how much I scrub it moisturize I just keep sloughing off continent sized chunks of my foot.

Man I miss pedicures, and proper showers, and all things involved in, well, grooming. 

MS Is Hazardous To Your Health

I broke my leg. Or, more to the point, MS broke my leg. I was transferring(blerg. That's something old people and cripples do) from the toilet to my scooter aaannnnd... pop. 

An ambulance was called, my dignity was lost and my favorite pair of jeans was ruined(they had to cut them off). 

The nurse in the ER actually said they get a fair amount of MSers in with broken bones. Serves me right for ignoring my physical therapist when he expressed concern about me falling.

"I'm good at falling," I said. "What's there to worry about?"

Anyhoo, despite being mostly bed-bound during a super busy time - both of my boys starting school, all the back-to-school stuff and hubbub - we have managed pretty well. Hubs, who has always been an angel, has really outdone himself with the cooking, cleaning, boy chauffeuring, helping me out ON TOP of his demanding job. 

How did I get so lucky? Because, really, I am super lucky.

Super lucky, but my leg does hurt.

Nothing But Lemons

I'm so sick of being sick. Having MS and being disabled has been there, at the forefront of my consciousness, for a while now. 

"But I've got my brain," I've been telling myself. My body may be broken but at least my noggin is a-okay.

Except it's not. My stupid tumor has grown. It's only a teeny, tiny bit bigger, but the oncologist seemed pretty confident that it's grown over the past year. The oncologist seemed more serious than usual and the observing resident looked at my scooter, then the pictures of my brain, and then averted my gaze.

I mean, fuck. Bad Gumball!

I Am Not So Smart

A few months ago I resolved to exercise my sad, immobile body a bit - some stretching, maybe a few wobbly steps behind the rollator and, most importantly, some time on the stationary bike. 

For months now my sweet hubs has helped me onto the bike in the hopes that we might get some blood pumping through my legs. And for months I've been wanting to cry at how difficult it is to pedal the stupid pedals. 

"My legs are totally screwed," I've been thinking. But still, get up on that bike and move as much as I can, only lasting a minute or so. 

Sad, right? Well last night, as I was panting after biking only a tenth of a mile, Hubs noticed that the bike was on the toughest setting. Seriously

It's a small victory, but I'll take it

Coming Out

Hi, I'm Aitch and I have some stuff to get off my chest.


First, I've lived. I've lived a lot. I've visited close to thirty countries, lived in five countries, got a BA and a MA from two kick ass universities, danced on bars, slept on beaches, made out with loooott of guys, married the greatest guy and gave birth to the two greatest kids. I have never been one to not live life to the fullest.


Until recently, that is. See, I'm disabled. Completely, absolutely, no way to hide it - disabled. I can't walk, I often require my husband's help into or out of the shower, sometimes my legs won't bend and my muscle relaxers don't work so I have to wake him up to roll me over in bed at night, I'm starting to get a hump on my back because my once perfect posture has been felled by a lack of core strength, I can barely write anymore because I'm right handed and my right side is my bad side, and I am always, always, always  worried about pissing my pants. I own a cane, a walker, a wheelchair and a scooter.


I'm forty years old. Not eighty, not ninety, not 102. Forty. Forty years old and my mom, who also has MS, can run circles around me. I am, if not the worst case scenario, definitely a warning or bogeyman for others with MS.


It sucks, but there it is. I've put it out there, now on with the rest of my life.

Disability Is Expensive

Not that that needed to be said, but it is really, painfully pricey being disabled. And I'm not just talking about doctor's and hospital bills; ordinary, everyday things come with an additional expense - a cripple tax, if you will. Dispiriting and tear-inducing for me, downright prohibitive for most. It sucks.


What brought this post on was the need to adapt my ALREADY adapted minivan. I call my minivan Tom, but that's beside the point. Tom's got a handy dandy ramp, but now that my stupid right leg is essentially useless I decided to get hand controls put in as well.


I was trained to use hand controls before Christmas by a lovely guy, took my van in last week for the modifications and... and... it's just been a cascade of humiliation and cash hemorrhaging ever since. As if being (relatively) young and needing a hand control to drive your ramp van wasn't bad enough, there's been much discussion amongst the gimpy gear hawkers about the best model of hand control for me. The one we agreed on, that I was measured for, won't fit in Tom. There are other options, but there won't be any room for me to shimmy from my scooter to the seat. Again, I was measured for all of this so it should have been sorted out.


So after much back and forth and much of being called "dear" by the receptionist at the cripple emporium, it's been decided that, along with all the other modifications made to Tom, I need a "transfer seat." And it will cost an extra $3000 for it.


I hate this.

Good Gumball

So the Gumball is staying a, er, Gumball. Nine months since my Meningioma diagnosis and the tumor has decided to maintain its size and to continue to leave the surrounding brain tissue alone - meaning no swelling/edema. Great news!

An Homage To My Scooter

Meet Gumball

As if having Multiple Sclerosis wasn't awesome enough, I recently found out I have a brain tumor. After years of waxing hypochondriacally I have an honest to goodness tumor contained within my skull. Fuck.

The good news is that it's small, easy to get to and *most likely* benign.

I call it Gumball. Gumball's most likely a meningioma( a tumor in the lining of my brain) and **touch serious amount of wood** is content remaining the size of, er, a gumball right now. As long as he keeps that up there will be no need to go in and retrieve him.

I'm Younger Than My Scooter Makes Me Look

I took The Little Boy to the cafe today and a man who is old enough to be my grandfather called me ma'am. A group of elderly gentlemen was enjoying their morning coffee and chat, and they were blocking much of the sidewalk.

No biggie. I smiled and was about to chirp a cheerful "excuse me," when one of them asked, 'are we in your way, ma'am?'

I can't remember what happened next. I hope I was still smiling and that I said "thank you," but all I was thinking when I rolled up to meet my dad and baby was "fucking scooter, making me look like an old lady! Ma'am. Ma'am!? It's bad enough when I get ma'am'd by a teenage busboy."

Grumble.

The funny thing is that, as long as my gray's are nice and dyed, I actually look much younger than my 39 years.

Everyday Humiliations

I picked The Boy up at school the other day, just like I've done hundreds of other times. As we were leaving I heard the pounding of small feet approaching so I closed the gate behind me. I turned as we were getting in the car and saw a boy - the presumed source of the noise - and his mom as they were leaving.

I smiled and said, "Oh sorry. Didn't mean to close the gate on you, it's just that I heard little feet running up behind me."

The mom looked at me and said, as though I was a child myself, "Well we usually DO like to keep the gate closed so good job." Then she pursed her lips, crinkled her nose and gave me a fake, vacant smile as she carried on through the parking lot with her kid.

As I strapped The Boy into his car seat I could feel my neck and ear getting hot and my eyes tingling, a sign that I didn't know whether I was mad or sad. The short drive home, when I was replaying the whole 30 second exchange over and over in my head, led me to believe that it was definitely anger I was feeling.

I'm over it now.

Then this morning, The Boy's first ever last day of school, I went to leave after dropping him off and my sweet boy went to hold the gate open for me. There was a crowd of parents and kids waiting to get in so he held the gate open for them while I waited beside him, smiling and saying hi. Then I notice a perfectly able bodied cow stepping out of a black Lexus SUV, one without a disabled placard or plates, walk through the gate with her spawn and look down at me like I was something stuck to her shoe.

The thing is this wench ALWAYS parks in the disabled spot, probably because it's 'just for a sec' while she drops her kid off. Well guess what, lady, EVERYONE is dropping their kid/s off. You're not special!

You know who is special? Me! The cripple whose very existence seems to bother you. So stay the hell out of the handicap spots!

Heat is My Cryptonite and Summer is My Crypton

This morning I took The Boy to school then took The Little Boy out to enjoy a coffee with his grandpa and friend of ours, and it was soooooo hot. My phone says it's supposed to get up to almost 100 degrees today, and my numb right pinky concurs.

It's mid-May and I can already feel my myelin melting. Thank God for air conditioning, but it's not like staying in my house for the next four months is really an option.

Blerg. I really hate Summer.

I'm Not Drunk...

I have MS.

That was my line for yeeaaaaars. Run into a wall, "I'm not drunk, I have MS." Stagger into a stranger, "I'm not drunk, I have MS." Fall and end up splayed on the sidewalk after leaving a bar where you've had a drink, one drink, with friends. Well this is awkward, "I'm not drunk, I have MS."

For the better part of a decade I've smiled sweetly and apologized profusely for making an ass out of myself, but I'm all done bending over backwards, sometimes literally, to prove I'm anything other than what I am - someone who has been hobbled by MS.

My myelin's been scarred, my muscles have been weakened and my waist has thickened. Not that I was ever Miss Athletic, but it's now official - I am disabled and I look it. I am a fairly young looking thirty-something, but I have the stamina and strength of a nonagenarian. I mostly get around with my scooter - I call it Jaro, which is also the name for my wheelchair. I have a cane and a walker too.

'Tis a far cry from the twenty-something me who traveled around Europe carrying more than half my body weight in a backpack or who traversed the hills of Berkeley with 50 pounds of books crammed into a book bag.

Yup, things are different, and I'm trying to get to the point where I can say, truthfully, that that's okay.