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Jamie-Lynn and Hiding

 I just learned that Sopranos star Jamie Lynn Sigler came out as having MS.  She hid it for almost 15 years.  Holy Crap!  I couldn't hide it for a minute.  That poor woman.  I was doing an episode of CSI when I was in the middle of my diagnosis.  I was having electric shocks, and tingles, vibrating legs, and lots of anxiety.  I didn't say anything because I was only there for a week and why would I?  But my character was a woman whose husband had just died and I had to cry in most scenes so it was pretty easy to get into character.  I was thankful though, at the end, that it was over and I could go back to just dealing with everything.   It's weird enough to be working and have all these feelings in your body, fatigue, etc. but then to have to lie about it too just makes things even harder.  We are lucky though that we can work.  A lot of people aren't able to work at all and I feel for them.

 My neurologist at the time told me not to tell anyone about the MS.  That no one would hire me.  That there was a stigma.  That is what they told Jamie and it's probably true.  Jamie Lynn was working a ton and to come out could have cost her a lot.  I'm glad she came forward.  Now is a time of breaking down barriers and stigmas.  It's a time of growth.  The only way people will be more comfortable hiring someone with MS is if it is familiar to them and not such a mystery.

  I had a friend say her ex had MS and after he was diagnosed she didn't find him attractive.  I heard a woman making fun of a girl in class who would drop things and trip because she had MS.  I have wondered if I would still be attractive once everyone knows.  I have wondered if I am killing my career by making this blog and doing this horse ride.  And then I wonder if anyone will even read it. It is such a vulnerable situation.  Weird right, wondering if you will lose the ability to use your legs is understandable but then to wonder if you will still be attractive?  Where the hell did that come from?  Sounds pretty shallow but that's the stuff that goes through your mind!  Am I different now?  Will people like me?  Who will help me if I need it?  Can I still have fun?  I'm too young for this!  I don't want to just sit down and be mellow all the time!  Are people going to make fun of me?  You're whole existence comes into question.  But like Jamie says, we gotta take our power back.  I can't hide it.  I have a big mouth and I say what's on my mind, even if I don't look so hot afterward.  So Jamie took one for the team!  I'm sure it's a big weight lifted off her shoulders.  Now I'm gonna use it before I lose it and get to riding!!!

 


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Motorcycle trip!

My boyfriend and I decided to ride his new motorcycle to see Sturgill Simpson play in Tucson, Az.  We rode around 1500 miles in the trip!  Near the Salton Sea we went through a desert windstorm which turned into a whiteout for awhile.  Battling the wind and sand the bike was at a 45 degree lean for hours.  It was terrifying and exhausting with the semi trucks threatening to suck us under and then push us down once we blasted past.  I finally had to decide to love the semi's and the wind.  I couldn't keep up that amount of adrenaline for so long!  So when a gust would feel like the wheels were going to slide from beneath us, I would laugh as loud as I could and pretend it was a rollercoaster ride.  We started leaning our heads down and I felt like a rocketeer.  I started asking the trucks to honk.  The trip became an adventure and we really felt like we had accomplished something when we finished.  The day after the ride I had the worst MS feelings I have had yet.  My legs vibrated and shook until I couldn't stand and I couldn't bear to move even a toe because of the pins and needles feeling.  But, I meditated.  I breathed.  I hydrated.  And it passed.  I think it was so good for me to experience that.  I know that it will pass and I can complete my journey.  We rode another 500 miles after that.  Traveling at 90mph is exciting, but I really can't wait to travel 5mph with my horse.  I can't wait to feel connected to the land, as opposed to racing over the top of it.

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