Back in the saddle, sort of…

I spent 5 days in NYC couple of weeks back. I was working a convention and had this genius idea that it might be good to get out of Javits and enjoy some fresh, crisp, October air by walking back the 6 blocks to the hotel. Six Avenue blocks. Six l-o-n-g, hot, avenue blocks. Six Oh My Stars what kind of fresh, crisp, hell have I just conscripted myself to blocks.

By the time I staggered into the hotel lobby like a piece of flabby meat jewelery on my boss’ arm, I was almost in tears. Mark, my boss, bless his heart suggested we sit and have a glass of wine and a quick bite to eat before starting on the evening line up of 2 client hosted parties. After a half hour and a nice cool glass of wine, a big glass of water and some bruschetta, I felt almost as good as new. Almost.

Cab downtown. No problem. Listen to some nice, mellow music through a world class microphone. No problem. Hydrate with lots of water. No problem. Get a cab back uptown. No problem. Stop at the corner of 59th street. Problem.

The cabbie says “Get out! Is only one block!”. Mark says to the driver, “No. My friend can’t walk. Take us where we need to go!” We are summarily cursed out in Sanskrit or something like it, as the driver throws the car in reverse, steps on the gas, and runs into a bicyclist. This being Manhattan, everyone from the pedestrians, the cyclist himself, and people at a bus stop are all screaming “Can’t you drive you fuckin’ idiot!?”” Watch where you’re going!” “Wassthematterwithyou!?” until the cyclists wobbles off after a few more choice words and some good smacks to the roof of the cab.

Surprisingly, this doesn’t put our driver in any better mood and he reiterates “Is only one block!”. Our resolve is strong though, so he mumbles further under his breath and puts on his blinker. Now remember, we are in Manhattan. Corner of 59th and 8th. What did he do? What anyone would do ~ try to pull a U-TURN across 4 lanes of traffic at a stopped intersection. And guess what!? Shocker ~ we were t-boned by another cab. Well, this other cabbie who hit us was not nearly as calm or pleasant as the guy on the bike. More cussing and name calling (in Swahili now I think) until our driver turns to us and says “IS ONLY ONE BLOCK!”.

At this point, I decide I might be able to walk the one block after all. After Mark asks him for a receipt (I kid you not ~ our company is tight about these things!) we make it to the next event. By now, it is almost 9:00 pm, close to the end of the party. I grab a nice big glass of wine (because by now I’m ready for a drink), and start snacking on cold crab cakes, soggy asparagus wrapped around prosciutto, and mushroom caps stuffed with substance (unidentified). That bruschetta seems a long time ago.

So here’s the set up: I’m really tired from being on my feet all day. I can’t really stand because I had to enjoy that crisp, fresh, October air and walk until I was crippled. I’ve had a big glass of wine. I’m kinda rattled from the cab accident. I’ve been eating nothing but appetizer dregs. So when the last man standing at the party suggests we smoke some weed, I think it’s an excellent idea. Pot is supposed to be good for people like me with MS, and I smoked some like 7 years ago, so figure I’m due. Yes. This definitely seems like just the ticket.

Fast forward 15 minutes. It’s time to head back to the hotel, since there is no one left but the catering staff, me, one other guy and the pot man. I think I gracefully twirl into the room from the patio, then think I do a perfect pirouette, and then know I land on my ass. I’m laughing so hard I’m crying, and who should I look up to see lending me a hand, but my client.

This is when I love the business I’m in. My gentle client has a laugh with me, sends me home in a cab and then tells me the next day to pretend it never happened. Much as I’d like to, I kind of think it’s better that I do remember it. I must remember that the 6 block walk killed me for almost a week. Maybe I should smoke some pot….?

October 19, 2009

La Crescenta, CA

SWF ISO LTR PS W/MS

I’ve been on many dates over the past few years ~ blind dates, internet dates, dating services, I’ve tried lots of things. One thing though, continues to elude me. When do you pop the old “Oh, did I forget to mention on my profile that I have Multiple Sclerosis? Oops! Ha ha!”

At what point are you 1) being deceptive 2) giving out too much information 3) Letting MS define you 4) ad infinitum

SWF; 52 years young; love all outdoor activities including sitting, looking, smiling, viewing. Recently gave up hiking, skiing, walking, running, surfing and long walks on the beach.

I used to look great in heels and a gown, but can only be comfortable now in jeans and a t-shirt!

I always like the a part about the long walk and then snuggling in front of of a fire. Right. Here’s the MS version of that activity:

You and your date park at the beach, far away from the sand. You take 2 chairs, a cooler, a blanket, a book and some sunscreen. You struggle across the sand dunes while the items you are designated to carry slip through your fingers which are numb due to neuropathy. Every few feet you stop for a quick rest and reconnaissance of the items you’ve dropped. “Coming sweetums!” you sing out.

You reach a quiet spot to settle down. Your legs are burning, your head is swimming, you’re so hot your limbs feel like they’re connected by silly putty. Your eyes might do that little flicker thing that mine do that make me think that is what a lizards eye must see. “Isn’t this fun?!” Oh yes!

As you settle in, your date suggests taking off your shorts and tank top and sitting in your suit. Hmm…how to explain the body riddled with dents from your injection sites? “Oh these!? Nothing. I was in a tiny fender bender 365 days last year”. You mumble something about sensitive skin and move on.

You make it through the day, and now it’s time for the long walk, then the snuggle. All day in the sun, you’re now walking like the love child of Frankenstein and Gumby. “Golly, the sun has made me tired, can we just head up to the house?”. Bullet dodged.

Fast forward to the couch. You’re beat from sitting in the sun all day. You’re exhausted from walking in the sand. Let’s start the fire! Let’s have some wine! Great. A glass of wine is SO what you need, but not combined with more heat and the need to be effervescent and charming. Drat!

This might be the time to spill the news. Or, come to think of it, if you haven’t had the urge to confess yet, then chances are this guy isn’t worth.  Go home, pour a big drink, snuggle up, and drop into a long, reinvigorating sleep.

October 26, 2009

La Crescenta, CA

Yoga

I’ve always been a pretty active person, and I still work out at the gym as much as I can. I’ve worked out with a trainer, taken classes, lifted weights, done Pilates, circuit training, aerobics, Jazzercise (remember that!?), step classes, jogging, hiking, pretty much everything but skiing. Two things I don’t do: ski, and clean house, but that’s another story.

Prior to my MS diagnosis, I knew that there was some pretty wacky and random stuff going on with my body. The suggestion came from friends that I should try yoga to help put my body back in balance. Sure! Let’s do that!

Generally, I am not the kind of person who does much research once I get a bug in my bonnet. I leap faithfully out of the plane and say “oh! Was I supposed to have a parachute? Who knew!” Yoga was no different. I went down to my local Yoga and You, A New Way of Life, or whatever it was called, unrolled my new pink yoga mat and prepared to become balanced.

Balance is a key word here, as those of us with MS know. I can only look at the stars from flat on my back, fall into giggling fits every time I try to walk with my eyes closed, and can walk a straight line and end up across the street. And, as anyone with MS can attest to, heat is not our friend, particularly when it comes to balance.

Now, if I’d done any research at all, I’d have realized that Bikram was not the name of the instructor, or the owner of the yoga studio. Instead, I began to stretch and bend along with about 10 other very stretchy and bendable people. I feel a little bit awkward, but ok. The room is nice and toasty which I find sort of soothing, initially. Then the instructor has us stand on one foot with the other bent up to our knee. This did not go well for me, but I keep trying. The room starts to get even warmer. I must really be working myself out! Even though it doesn’t seem that tough, I’m sweating like a pig!

She instructs us to stand on one foot and lean forward with the other leg extended behind. Ok, maybe not so much for me. Then, switch that pose with a little leap. Ha ha! I don’t think so! Now downward dog and lift another leg! By now, she’s figured out I must be new, so she guides me to the wall and tells me to lean against that – many newbies have a problem with these advanced class poses. Advanced class!? How did I manage to get into an advanced class and why IS IT SO HOT!?

By the time things wind down and we’re just standing there with our hands in front us doing a namaste thing, I can’t even stand on two feet. I’m sagging against the wall, sweat pouring off of me, unable to walk.  I feel like a noodle that’s been sucked out of a soggy bowl of soup. The last thing I feel is balanced.

I slither along the wall towards the door. The instructor sings out to me in her calm, serene, oh-so- invigorated voice “See you next week! It gets easier with practice!” I wouldn’t know. Hell will freeze over before I go see Mr. Bikram again, and bad as I might be, I’m not going there. It’s too hot.

November 5, 2009

La Crescenta, CA

Camping

One of my all time favorite activities is hiking. I love the treasure hunt feel of the trail…the path goes up around the bend, under a tree canopy, over a rise – you never quite know what you’re going to stumble upon next (ok, bad metaphor in my case, maybe).

Back when I was younger, the girl’s dad, Ken, and I used to go backpacking. I have the most wonderful memories of fly fishing, and setting up the tent in the wind. We once hiked through a bog up at Army Pass in the Sierra. At the time, we were MISERABLE but it remains one of our favorite stories to recount together.

When the girls were in their teens, their senior girl scout troop did a camp out called Tambu up at Tejon Pass. The girl scouts seldom do things that don’t have a catchy Indian sounding moniker and some companion songs that sound more like dirges than Kumbaya.

Anyway, girl scouts are also big on competition, and this particular annual camp out was a biggie. The troops got points if ALL the members of each troop backpacked the one mile in to camp. Well, now we’re talking my language. Piece of cake.

I hadn’t worn a pack in years ~ I’d been raising children!  I took my ancient pack out of the old cabinet in the garage, aired it out, threw away some vintage moleskin, an old band aid, some Top Ramen and some freeze dried tomato beef stew; and grinned like an old tar. I was ready to hit the high seas of hiking again.

This was a short hike, only one mile, down hill, on a well graded road. I had taken on Monarch Pass, what was this? Phhhttt.  The years had taken it’s toll on my packing abilities (not a suitcase, that I could teach a class on), but hey, how hard could it be? So I rolled up my hairbrush into a t-shirt, smashed a pair of jeans and a some underwear in, and hooked on a water bottle. Strap on my down bag, and I’m good to go.

We get to the marshaling area and count off. It’s kind of cold; there are tired little patches of ice in bleak drifts by the side of the road and some lame puddles. We head off as a group down the hill. I haven’t worn my hiking boots since the last time I used my pack, so they’re feeling a little stiff. I also did not adjust my pack to my body frame, I mean come on, how much could I have changed over 18 years? I’m still within 10 lbs of my 25 year old self.

By the time we get about 1/4 of a mile into it, I’m not singing the ‘ol scout songs with quite as much gusto. By 1/2 a mile I’m starting to mumble and curse my previous vigor under my breath. By the time we hit 3/4 of a mile I’m glowering at the girls, the trees, the mud, my boots, anything that is glower worthy. By the time we hit camp I am flat out grumpy and wondering if anyone brought the fixings for martinis and separately considering why I ever thought this backpacking thing was so damn great.

We set up tents, whip up some hobo packs, sing some songs, clean up, hit the hay. I’m sharing a small tent with another leader. As I zip into my mummy bag I’m contemplating that this thing is rated to -10 degrees. Does down lose warming ability as it sits stuffed into an airless bag for a year? There is no way it’s going to be -10…I’ll be fine.

I’m trying to warm up and sleep, but man-o-man does my body feel weird. My feet feel like they are attached to my legs at a wrong angle and my hips feel like they are connected at a different cant. My back hurts and I’m COLD. The weather is definitely chilling up here in the mountains.

When I awaken at dawn, I’m buried in a down sleeping bag, wearing two girl scout sweatshirts, two pairs of socks, sweat pants and wrapped in a Hefty garbage bag. A vague memory of clawing through my pack to find anything that will warm me emerges. I start to cry. I feel like such a sorry ass and useless back packer, let alone any kind of example for my girls.

They are still sleeping as I cajole myself with the miserable humor of all this. I wipe my now frozen tears, get a cup of coffee, pack up to go home (no way am I spending the whole weekend here!), donate my Hefty bag to the other leader and swear off camping forever.

In retrospect, there was one component I hadn’t factored in because I didn’t know it was coming along with me, let alone everywhere I was going from then on. My MS companion was still a secret to me then. I will tell you one thing, that weekend sure hammered home the upside to a 5 star hotel!

November 7, 2009

La Crescenta, CA

You can’t be afraid of who you are.

Ok, so I’m super addicted to the Biggest Loser. And I eat peanut butter sandwiches with cheese on them. I still hold some secrets.

One of the last episodes highlighted a woman named Abby who had lost her husband, daughter and baby son in a car accident.

What do you even say.

It got me thinking about inspiration. According to the show, Abby has gone on to become a motivational speaker ~ and she certainly has a story to tell about overcoming the greatest of odds. It totally made me cry and applaud the unfathomable strength of humans, and (sorry guys), especially women.

When I was diagnosed with MS back on May 4, 2001, suffice it to say it was not the best day. I came home freaked, my two beautiful girls were scared and confused, and very unlike us, we all started yelling at each other, peeing in our corners, and crying. Anna went home to my ex husband Ken’s house, Liza and I squared off, and the night finally ended.

The next morning, as I was planning my pity party in my head (I’d just been diagnosed with MS for god’s sake! What does one wear? What does one drink? Gin perhaps might be fitting…) I met Liza in the kitchen as she was getting ready for school. She was 13 years old, and had been diagnosed as a type 1 diabetic for 4 years. I looked at her and asked her, flat out, how she coped everyday with a chronic, degenerative disease that was not going to get better (at best) and make her further disabled and kill her (at worst). I’d been diagnosed for 6 hours ~ drama came easy.

I asked her, “Aren’t you scared? Everyday?”.  Now my friend Sue used to call my daughter Elizabeth Taylor with bad teeth (because she has this beautiful chestnut hair and violet eyes; but she was also like a shark, she had over 22 teeth pulled out of her mouth, they just kept growing back all crowded and crooked ~ thankfully she doesn’t bite). So she looks right at me with these big, beautiful, long lashed, incredible purple eyes and says “No mom. It’s just a part of who you are, and you can’t be scared of who you are.”

Bing! Pop! From the mouths of babes. It was the best (and only) advice I’ve ever heeded when it comes to facing my MS.  I never have gotten to have a pity party. That’s ok though, I don’t even drink gin. One more secret exposed. : – )

November 6, 2009

La Crescenta, CA

Welcome

Hello, my name is Erika. Welcome to my blog! You’ve probably guessed already, that I have MS. (Who says we’re losing cognitive skills!?) The world might not need one more blog (ya think?), but I’m doing this for me. If you want to read along, welcome!

I’m 52 and live in La Crescenta, CA. No one had ever heard of La Crescenta until last month when the largest fire in the state’s history tore through here and we made national news. I live alone with 2 cats, Clark and Cleo; and have 2 grown daughters, Anna and Liza. I have a wonderful mom who is 89 and going strong; an older sister in Seattle, an older brother in Northern California and a total of 4 nephews. Ok, now you know all about me.

Oh yes. The MS thing. I had some very weird thing happen to my right eye when I was about 27 years old. I went to the Jules Stein Eye Institute here in LA because they thought it might be a detached retina. Hmmm….no. Maybe it’s this? Hmmm….no. Maybe it’s that? hmmmmm….no. So I was sent off to see a neurologist who pricked me with pins, hit me with rubber mallets and sent me home perplexed. Back in 1984, MS was not so prevalent? Easily diagnosed? I don’t know.

Fast forward to 2000. I’m jogging around the high school track with my young teenaged girls. Sweethearts that they are, they start teasing me for running like a 90 year old man with a dragging foot. Shaddyup! But they do have a point. So, like any well adjusted American, I quit running. Never did like it anyway.

Now it’s early 2001 and I’m up in Seattle visiting Lisa. We decided to go on a nice walk around the arboretum (it is lovely ~ go if you get the chance!). It’s an easy, flat walk, maybe a couple of miles. As we get back near her house there is this little gentle hill about two blocks long, and I tell her I can’t make it and need to rest. Did I forget to mention that Lisa is on her way in two weeks to run the NY Marathon? That’s she’s sailed through the Boston Marathon, like, 3 times? Needless to say, my sister becomes just a little bit alarmed. So on her gentle urging (YOU BETTER GET THAT CHECKED OUT SIS!) I went to my doctor. He sent me to a neurologist. The neurologist sent me to the MRI. The MRI sent me to the lab. The lab sent me back to the neurologist. He finally gave me something. A diagnosis of MS. WTF!?

October 19, 2009

La Crescenta, CA