Saturday, July 24, 2010

Baggage and Dating...

Being a woman of a certain age, means that there are flutterings of the heart that occur. I would notice men of interest all the time. The thing was I very seldom had the confidence to pursue them. I had a preconceived notion of the "preconceived notion" that they would have of me. I was never itty-bitty, ski racers rarely are. I didn't fit into the quote unquote, "normal" package. And now I had this extra baggage... The MS and cane baggage to contend with.

Don't get me wrong, I dated... I dated long-distance boyfriends that I built up in my mind to be who I needed them to be. And quite un-proudly I socialized with other peoples boyfriend's who were unhappy and unfulfilled with the pretty little airheads they had in line. I justified all of this easily enough though; "I was protecting everyone else from my stuff and at the same time myself from the more than OBVIOUS rejection that would ensue." I thought at the time I was doing the world a favor and so what if it meant that I had to cry myself to sleep every night while the guy I was a pinning and connecting with had a pretty little prize to cuddle up beside?

The truth is the further I got into this disease process the harder it was to maintain ANY relationships. Friends enjoyed the "good time", "persevering" Shara... But no one knew what to say on the other end of the line as I cried and spoke about the humiliation of wetting myself and falling down like a drunk in public, or the fact that my body hurt so bad some days that I wanted to die. Those were things people clearly didn't want to hear and I didn't want to upset them by harping on it after I pin-pointed their discomfort. They didn't know how to cope or what to say to make it "okay".

The fact of the matter is this, for all of you "normal's" reading this blog; progressively sick people aren't looking to be saved, or pitied, or worshipped for being "so strong". The truth is that people; healthy, happy, sick or mad people, just want to be heard. I pulled back a lot in life because I didn't want to upset anyone. I considered how they would  feel, rather than telling them how I was feeling or what I was thinking.

When I first got my cane the thing I remember most, was the interest that total strangers took in it. The hostess at the restaurant that would ask me as she seated us "why I had the cane". Being the ever so considerate invalid that I was I created quick remarks to guard them from feeling foolish for asking the invasive question before us; "you've heard of beating them off with a stick?... (Comedic pause) ... Well this is my stick." HAHAHAHAHA.

In regards to dating I thought I had figured out the perfect scenario when I actually picked up a guy after giving an MS based speech one day at a fundraiser for the Jimmy Heuga Foundation's Snow Express For MS. We dated for a few months and I thought it was perfect because EVERYTHING was already on the table. This guy knew I had MS. More than that he was at least a little educated about what that meant. However like most people I think the "idea" of dating someone with a progressive disease, didn't quite match the "reality" of dating that same individual. He was out the door before the third day of "OUR" first attack.

Am I sad I don't have a significant other in my life? Yes. Am I extremely tired of carrying the load on my own everyday? Yes. Do I NEED a man to make my disease "better"? NO. Will I EVER make the mistake of putting someone else's comfort about my disease before my own again? No. Did it take thousands of dollars in counselling to get me there? Yes... Do I now have beautiful, supportive friends that I can turn to? YES!

But at the end of it all, can I now look at the hostess and hand off the responsibility of the awkwardness of the situation and say; "I have MS." And look down at the menu as she pauses before walking away? ABSOLUTELY, POSITIVELY, YES! And... I might even go back to that same restaurant again. :)

Friday, July 23, 2010

My Story... So Far... Part 9

Being a manager is not as fun as being a stylist... I mean don't get me wrong, there are aspects that I really enjoyed and I was so grateful to have the position at all. BUT, I really didn't like counting every single thing in the salon and spa for inventory EVERY month and the accounting jobs; I mean I am a detail oriented person, but that was just mean!

It turns out though that I did really enjoy setting up interview questions, training and development initiatives and plans, retention strategies and policy and procedures manuals even... I really liked EVERY aspect of the human resources tasks I got to perform. I knew going back to school was going to be something that needed to happen, so here was my new calling, my new destiny!

I enrolled part-time to start. I knew that Mom and Dad couldn't afford for me to be a "professional" student. They gave as much as they could, funding my little sister's University education at the same time. My job stayed the way it was and I added school in the evenings a couple times a week to start. At first that wasn't bad... I think the adrenaline of being back at school and learning just kept me operating at top speed. Then I crashed. And crashing never looks pretty, no matter how you try to dress it up.

My fatigue became crippling, I felt tired all the time. I would get crazy headaches and my left hand was numb so working on my computer became increasingly challenging.

I talked to my employer once again and explained I was going to have to cut back hours some more. We decided to start to look for another manager and I would pull back and just work the front desk a few times a week and all day on the weekends. Looking back I can't believe how lucky I got to have such an understanding boss for all of those years and transitions in this life.

The more I did school, the more I wanted to complete it as quickly as possible. I hated being a drain on my parents. More than that, I hated being in limbo. I didn't want my illness to define me and I certainly didn't identify with my illness. My neurologist appointments were getting harder and harder for me to take. The doctor I had liked was now long gone, he went to a small island in Scotland to pursue his MS research. I now had a new neuro with the bedside manner of a rock.

He enrolled me in a program where I'd go to see Occupational Therapist's and Psychologist's and (good times) Urologist's. This of course really helped the fatigue because now on top of working AND going to school; I was fitting in numerous doctors appointments into my schedule as well. But I thought, "hey, at least it's something none drug related that I can do."

The O.T. was really helpful and totally relatable for me because she was only a few years older than myself at the time. The Psychologist wasn't as smart as me, so I thought my way in and out of our appointments all the time and really didn't receive very much insight at that point in time. The Urologist was humbling... I cried like a baby the day I found out that I couldn't drain my bladder on my own accord anymore. I couldn't believe I was learning how to use catheters and strategies about bathroom breaks and frequency all the time.

The peeing thing hit me hard. I mean no one even had to teach you how to pee... You just did it. You knew how to do it before you ever even took a breath! And here I was, working at it. Finding out it wasn't as easy as I'd been lead to believe. It was too much to take in- this one, MS, was below the belt!!! Pun, totally intended!

Friday, July 16, 2010

My Story... So Far... Part 8

It wasn't long until I realized that I wasn't going to be able to go back to my highly glamorous shiny new career as a hairstylist. A little time away had cleared that fog. I sat down with my Mom and my boss to give him the news, after a follow up appointment with the MS clinic clinched the fact that my body needed more time to heal.

I cried as I told my boss that I wasn't going to be able to follow through and that my best intentions and passions aside, I couldn't afford physically to pursue hairstyling. I was devastated, crushed. This is not the "champion" way I had grown up reaching for. I felt like I was giving up and letting the team down. This wasn't me- this was not in my nature. This flipping disease was robbing me of a lot more than careers and physical abilities. I was disappearing and I had no idea how to hold on; try as I may!

And thus that became the question; who am I? How does this dis-ease fit into my life and myself concept? Why? Why is this happening to me? And what the hell am I going to do next?

I went out to the family cabin in the East Kootney's to get away and heal. I sat by the creek with my journal writing everything and anything I felt about what had gone on. I cried, I laughed, I drank too much and ate too little. And I worked on putting the pieces together again. I tried to normalize as much as possible, but to be totally honest I had no idea what the heck "normal" was supposed to even look like.

I watched as the handwriting in my journal changed. My artistic hand writing and printing turned into two line consuming, bulleted notes. My fine motor skills were getting harder to control and the high dose steroids I was on were getting harder to choke back. This was not "me". This was not who I was or ready to be. I was 24 and unable to relate to anything my peers had to talk about. I was 24!

The phone rang one afternoon. It was my old boss... We went through the normal pleasantries one does. The "tough" question "how are you?", my most challenging nicety was thrown out there.

"Fine, relaxing", was my reply- even though it wasn't even close to the truth. He went on to tell me how much I was missed, and how the team was just not functioning the way it had before without me. I took this in with a breath I refused to exhale, as big crocodile tears rolled out of the corner of my eyes. It was the perfect thing to hear at the perfect moment. I thought my days of being able to offer something to an employer were done. My boss asked me back. He created a new "Administrative Manager" role for me. He went on to tell me to take my time, but to know there was something waiting for me when I was done.

Meaning! I had value and meaning again... Obviously I wasn't worthless if someone like my old salon wanted me back. I felt an overwhelming need to get better! To get back! And I put my mind to it... Hoping my body would eventually catch-up. COME ON BODY CATCH UP!!!

Monday, July 12, 2010

My Story... So Far... Part 7

It wasn't easy faking it through everyday like I had it all together; it takes an awful lot of energy actually. I'd been home for months and still couldn't reclaim my lower legs and my feet. I was taking a BIG fall at least once a day and I never knew how many pieces of glass my feet could attract until I couldn't perceive anything with the built-in warning system we all have. It was getting a little bit crazy! Bruises and  cuts were daily occurrences now; bumps in the road felt like mountains...

My Dad kept suggesting a cane to make things easier for me and safer, but being of the same stock as him I kept pushing that suggestion away. A cane, in my mind, meant that somehow this change had some sort of permanency; as if I was inviting this symptom to hang around by buying it its own accessories. I did not have time to buy a cane and find somewhere permanent to file this into my life- it WOULD go away... Wouldn't it?

One day I rushed from the lower part of the salon to the spa which was located upstairs, inorder to retreave something or another a client had requested. I remember clearly telling my legs to move and keep up with me, but they just weren't there and before I even had a chance to realize that, I took a huge tumble down the three stone steps to the entrance of the spa. As I hit the floor, it was like I hit the sudden realization in that moment that I couldn't pretend anymore. My friends and co-workers came rushing to my aid having heard the thump of my landing. I was crying, uncontrollably. I kept trying to stand up but it just wasn't happening on my own accord. Between the tears and the numbness I couldn't figure out how to get myself up off of the floor. One of my co-workers who happened to have the aesthetic of a body builder he rushed up and in to pick me up off the floor and gently placed me on a bench meant for guests.

I was humiliated, deflated. I had to give into the fact that I couldn't do, once again, what I was used to do. I had some water and a really good cry and my boss asked me to "follow" him into the office, as he supported me with his free arm and took me to the back. We talked about what exactly was going on with me physically. My MS was not a secret having been at the salon for over 3 years and apprenticed under his trained eye. He could see the shakes and tremors that I was a pro at concealing and technically accounting for. He was like a big brother more than a boss, always looking out for me. He told me; he certainly didn't ask me, to take some time off. I reluctantly nodded, knowing that no work meant no money in my field. He picked up the phone and instructed the desk clerk to reschedule my week as I cried a little more.

I couldn't believe this. I couldn't believe that already this disease was inching it's way into my new found passion and career! I loved what I did and I had the potential to be EXTREMELY good and successful at it. Now I was mad; mad at myself, mad at my boss, mad at my body, mad at my doctors, mad at my sister, mad at the world! No one was safe, I was MAD! I took my bosses "advice" and took the week off. I went to see my neurologist again, this time he suggested more than a week off and some high dose steroids again. GREAT! Did I mention I was mad at him?!

I knew that leaving for more than a week was like occupational suicide to a new stylist trying to build a solid and loyal clientele. It was hard enough having to disclose my "situation" every time someone sat in my chair and started to stare at my slightly shaky hands as I worked my way through the hundreds of  foils I was expertly placing in their hair...

My week became a month and my month became; short-term disability... Once again I was re-evaluating my life and my wants and my needs. In the meantime I went shopping for a cane with my Dad. We found a Lucite one that I thought of as being "invisible"... At least it was in my mind.

Wednesday, July 7, 2010

My Story... So Far... Part 6

I've been putting off writing this next entry... I still have a lot of resistance to the compounding episodes that played out in this portion of my life story, I think because I all of the sudden could not ignore the uninvited guest called MS and it stopped fitting neatly at the back of my closet and became much more of my day to day reality.

As I mentioned my Mom and my Step Dad moved out of the city and part of that equated into my Mom selling her little business that could and deciding to celebrate by taking us all on a family get away to Las Vegas; sounds pretty good so far, I know. The thing about Vegas, is that it's hot... It doesn't matter what time of year you go, it's a desert and it is there for HOT. A little known fact to those who do not have MS is that there is a HUGE sensitivity to heat that comes with the disease. In fact I can say from the time of birth that I've never been a big fan of the heat, I was always trying to avoid it. When my Mom and my sister were sun goddesses reading in the sun when I was a wee thing, I had no choice but to be in the pool. If I attempted to lie in the sun with the girls I would feel "weird", which is the most eloquent way I can describe it.

Anyway, we arrived in Vegas and the Strip felt like it was on fire; not only were we in the dessert, but there was also a heat wave- EXCELLENT! The good news when it comes to Vegas is that most of the time you can survive in-doors within the air conditioned havens of the hotels. We were having a BLAST. Foot long margaritas and karaoke video's being made; all the fun that makes Vegas, Vegas. The second night in Vegas was a big night! Mom had found out that none other than Mr. Tony Bennett was playing while we were in town; my Step Dad's favorite. We got dressed up and went out for dinner after a day of site seeing and busy exploring and then made our way to Cesar's Palace for the show.

The concert was nothing less than "marvelous and splendid" as my Step Father would say, it was a perfect end to a perfect day. We went to walk out of the hotel and make our way back to our own and as I stepped from the curb, like I had a million times before, my foot came down and felt like it just kept going and I couldn't find the security of the ground and I took a spill. Before I knew it I was lying on the ground, looking at my family, who were rushing and looking over me. I couldn't feel my legs...

My Step Dad helped me up and I leaned up against the huge fountain as I stood and assessed what the heck was going on. I didn't have a safety pin like my medical team used to expertly prick me up and down, but in rubbing my legs I was pretty sure that they were for all intents and purposes gone below my knees. Yeah for me... The hairstylist who was always on her feet. I sat there awhile and shed a few tears, unable to really articulate what was going on for me or how it happened so fast.

My family supported me into the cab and over to the MGM where we were staying. I felt like a drag. Even though it was my family surrounding me, I was embarrassed; my body was bruised but more importantly and to the point- so was my ego. I went straight up to the room and laid down to sleep. "Why now? Why here?" Were the questions bumping around my head as tears quietly rolled down my cheeks, I was rolled over on my side so that my sister, who I was sharing the room with, wouldn't see.

In the morning I woke to Mom at our door. My sister answered it and she announced the "new" plan of the day... I was sure she hadn't slept much herself, knowing the way that she worries and she confirmed it by telling us that she was the first one down by the pool that morning to book a cabana. Mom thought a quiet day was in order and I think in her head might "fix" me right up, but she knew I couldn't tolerate a day in the heat, soaking up the exorbidant sun so she got a cool cabana in the shade that sprayed water from little misters along the  roof edge.

The day was wonderful, but the rest and the mist and the rays didn't bring back my legs... I went home and EVERYONE kept suggesting I get a cane. HA! Can you believe that? A 25 year old woman with a cane?! Yeah right. "Wall walking" became my new championing sport; holding my hands out and touching the wall as I walked with my eyes always down. The smallest disparity in the lay of the land would mess me right up mind you.... This was crap! This was definitely not what I signed up for; remember the initial neurologist that diagnosed me said "one attack within your whole life"... I was beginning to think that he didn't know what he was talking about, Robin Williams look-a-like or not.