How do I "pass" as normal at work? AN plus Tremor Issues.

[Ellen K]

Hello, my W&W friends:

I was diagnosed with two issues last December: a small AN that had caused symptoms for about a two years, and an inherited, benign condition known as "essential tremor," (ET) which manifested just last fall.  ET causes shaking in the hands and occasionally in the legs, voice, tongue or head.  You've probably seen elderly people with this type of tremor, but I am only (!) 46, so I suspect people that I meet may think I'm terribly sick with MS or Parkinson's.  When I am tired, stressed, have been on a plane, hungry, thirsty, etc., the symptoms of both conditions worsen.  As a result, I have wonky head, my legs are weak and wobbly, my balance is off, my hands shake, and at times my voice shakes.  Charming!  The medications to control this type of tremor only work for a while, and the side effect is dizziness, which I could not tolerate. 

I work on public-interest issues and was in very intense, high-level meetings this week on Capitol Hill; I was mortified to have my voice shake, trouble finding words, tremor in my hands, staggering around, etc.  As the day progressed, I relaxed and did better, but I feel like public speaking or intense meetings could be a career killer for me.  My boss is very understanding about my health issues, but wants me to "get out there" more and speak. 

Have others dealt with feeling like an idiot at work?  How do you handle the situation without telling everyone what's going on?   Is it wise to modify your career plan as a result, or see if physical therapy or other methods could help first? (This seems especially relevant for W&W, as we have unknown time horizons).

And does anyone else out there have essential tremor too?  If so, I'd love to communicate with you by email or phone, as the symptoms seem to compound each other.
Thanks, Ellen

[Silver Sonnet]

Hi, Ellen.  Sorry to hear you are having problems, but your job sounds great!

My situation is a bit different, of course, but prior to my surgery, I also had significant balance issues.  Because I teach at a small state university, I was concerned about what my students and colleagues might think if (when) they saw me stumbling in the halls or in front of my class.  I solved the problem by just telling them that I'd recently been diagnosed with a condition that would cause balance problems until it was corrected; I told them I didn't want them to think I was drunk in the class room, and we all had a good laugh.

The more people who know about your condition, the less you'll need to worry; the less you worry, the fewer problems you'll have, so just tell everyone, without going into details.  You might even open presentations with a casual comment like, "In case my condition makes my speech unclear, please feel free to ask me to repeat myself."  You'll refocus your audience so that they can focus on what you are saying rather than worrying about "what's wrong with you."  You probably notice it far more than your audience does, so just being open about it can hopefully make everyone more comfortable.

[Kaybo]

I completely agree w/ Silver Sonnet. I have had issues for 15 years now & am VERY open & up-front about it. I've actually had people tell me after meetings that they appreciated it - it made them feel more at ease. I think SS had some GREAT wordings too!!

K 

[Kathy M]

Hi there!

I have a position in state government that puts me smack dab in front folks as well. Prior to all of this, they knew me as very competent, trustworthy, conscientious person and someone who was responsive to their questions and needs. After I returned to work, they still do. But my normal has changed. I am up front about my ssd, my memory, my wobbly gait when I'm tired, and I always acknowledge it with humor (which is not new for me, and helps make them comfortable). I was the one who felt broken and unworthy of people's respect.  Took me while to adjust this new normal, but I found that was not the case for those i have to interact with in my personal and professional life.

Not easy, I know. But even with these changes you are still you and here for good purpose. When I am doubting myself, I make sure to replace those negative words in my head with positive ones as quickly as possible. I even will give myself pep talks in the car on my way to work! Sounds crazy, I know. But that self talk can really drop ya like a rock or lift you up! It is so much more pleasant to be "up"!

Hang in and good luck to you!

Kathy

[tenai98]

Same here..being a teacher, I advise my students of my balance and hearing issues...I inform them that NO I did NOT have a drink or two before coming into work and we all get a good laugh out of it
JO

[Brewers7]

I am  felony court prosecutor with SSD, partial facial and vocal cord paralysis, and residual balance problems.  So, work has been a challenge.  I was especially worried about how jurors would react.  I got a Transear for the SSD, a Laryngoplasty for the vocal cord, and more physical therapy for the face and balance problems.  My jury last week did not seem the least bit concerned.  Keep on truckin.'

[Ellen K]

How I love this wonderful forum and the kind, smart, generous folks on it!  Thanks everyone for the thoughtful responses.  It actually never occurred to me just to let people know that I had balance and shaking issues - I will definitely try that at the next speaking engagement, and will be more up front with my co-workers.  I suspect that trying to look well has sapped my energy and confidence, and the approach you all suggested could free up some creativity and help my performance.  And no, I don't think it is crazy to give yourself pep talks - I need to do more of that!

You all seem to have dealt with much more difficult issues than me (such as post-op symptoms and facial paralysis) and I find your examples very inspiring.  Also - I would have been hard-pressed to do some of the work that you do when I was well - they are such intellectually demanding AND physical jobs, so I really take my hat off to you all.

I'm going to work on my one-liners for opening talks.  Also, I play in a (kinda lame but fun) rock band, and maybe I'll write a song about AN or balance issues.  I was totally inspired when I saw the singer Jill Sobule, who has essential tremor, play a song about her very shaky hands.  She uses humor so well; she talks about how some people have asked her if she has the DTs, and she explains that she hasn't been drunk since her friend's Bar Mitzvah party in the 7th grade .  Her (free) song, "shaky hands" is here if you want to take a listen; it's great.  http://www.jillsobule.com/resources/03_Shaky_Hands.mp3   
Ellen

[dragonmama]

I was just talking to the counsellor at the Canadian Hearing Society and she told me that advocating for yourself can be challenging, but it's worth the effort. A big part of advocating for yourself is educating the people around you.

I would love to hear (ha - *read*) other people's one-liners. When my emotional "cup" is full, I'm able to tell people about my deafness or balance issues in a matter-of-fact or humorous way, but I could use some quick scripted one-liners for those days when I'm feeling sensitive or emotional and don't have as easy access to my practical, creative and humourous sides.

Gael

[Tod]

Ellen,

I am senior bureaucrat in Virginia who occasionally works in Virginia. Since I had lost my voice following surgery for well over year (and it still goes in and out on me) and suffer from a persist cough, I am always up front about it. It is easy for me since the story of my a 36-hour surgery was covered in the agency newsletter which goes out statewide and I work with a number of people nationwide in higher ed data circles that new what was going on.

I also have no shame.

When I start coughing or choking, I always explain, "I am not a sick, it is from a brain tumor."

If I have a memory or thought lapse, I will say, "Excuse me, BT moment."

In presentations, including a keynote address at a state conference on the new higher ed reform bill just passes, I closed with, "In full disclosure, I recommend seeking legal advice from an attorney, not someone with a brain tumor."

Always good for laugh. I also have no shame in blaming Bob, my tumor, for any mistake I make.

I do these things for several of reasons. First, it puts me at ease. I don't have the vocal control or volume I once had, which is very disappointing. Public speaking is performance art. Second, it can help put others at ease. It also can open the conversation up later on the sidelines that can help inform others about ANs and other tumors, as well as give me a chance to show off my Baha. Third, it allows me to brag about the care I received at one of our fine public medical schools in the state.

This works for me, however, you may need to find a more appropriate approach for yourself. The DC crowd tends to be a bit more formal.

Good luck to you,

Tod

[dragonmama]

LOL Tod! I love your "having BT moment" - I'll be using that one! I don't think I can name my AN "Bob" since I have a cousin with that name and he is a bit twitchy. I think I'll ask my daughters to help me name it.

Gael

[CHD63]

Tod .....

Although I am retired from active work, I still do volunteer work at church.  What a wonderful attitude from someone in a position such as yours.

I do the same thing and you are right, it does put people at ease and it is a great opening to enlighten people about acoustic neuromas.

Thanks.

Clarice

[Ellen K]

 Tod, you are hilarious; what a great approach.! Thanks Dragonmama and Clarice.  I agree it's hard to advocate for yourself, especially when these symptoms aren't constant but go in and out (making me feel some days like I'm just a whiner since "it's not so bad.").  But I really like Tod's approach.  Though I have to say, I think I'd feel perfectly comfortable taking legal advice from a guy with a brain tumor.   Ellen

[iluuvpups]

Hi Ellen.  I too have ET.  Mine started just after my brain tumor was diagnosed a little over a year ago, when I was 46.  I have been told that there is no relation.  I find it interesting that you also have the combination.

As for work, I give presentations and do some work socializing.  My hands will shake when holding something, whether that be a pointer or a fork.  I just ignore it and continue on with what I'm doing.  I'm sure people think I have MS or Parkinson's.  I don't feel like an idiot, but I am embarrassed by it.

I will PM you.  --Carol Ann