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!!!
Friday, July 16, 2010
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.
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.
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.
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