Wondering how others are getting along in thier careers post treatment.
I feel very very vulnerable at my job sometimes... and like people just think of me as some sort of freak. Its so hard! I work really hard and try and do my best possible work and get along with everyone and be as innovative and creative as possible but I feel more and more marginalized at times. I'm 36- I have to keep working for a lot longer. I am a graphic designer in the beauty industry ...its a competative feild and i work with all women who are just not very nice to one another sometimes.

I wish I could explore other options but I feel kind of stuck there- Who else would hire me without a tongue? God communication skills are always emphasized in every job description I read. Would I be able to get health insurance if there were a million and one chance I could get a job offer elsewhere?

Does anyone else ever feel like this? Feeling stuck.
Sometimes its so hard to feel confident.

Just an observation here Kate, good communication skills does not necessarily mean verbal communication. Email, chat visual and other computer related forms are just as effective. My computer work has allowed me to work with some really amazing deaf folks. Up until a few years ago their communication was somewhat limited, but now by using computer communications, it has opened up a lot more opportunities.


Kevin

After having had 7/8ths of my tongue removed, plus 2 sets of radiation - I am on long term disability. It is partly a combination of speech problems plus extreme chronic fatigue plus arthritis in my hands which keeps me away from the workplace. After 32 years as a bank manager and farm/business lender (a fast paced /high pressure environment) - it has been quite an adjustment to be in this position, but I know that there is no way on God's green earth that I could work. Mind you, for those that love charades - I'm their girl!!

As my Radiation Oncologist said "it was extreme lifesaving treatment that had residual consequences" - thank of course translates to shut up and stop complaining - be glad you're here!!

I know what trouble you have had with your job Kate. I feel badly for you that you feel trapped due to health insurance issues. I don't know much about the American system so I don't know if you could get insurance elsewhere, but I do know that you write so well - clear, concise, eloquent, that you definitely HAVE excellent communication skills. As far as whether someone would hire you because of your tongue (or lack thereof), I am sure that most people would be normally curious about how you manage, but no one should discriminate based on that. If they did (or if you feel that your current job is doing that) you should certainly have a case vs your employer with the help of the disability and human rights groups.

Keep us posted.

Hugs

Donna

Kate,

I'm not a tongue cancer survivor however after my initial surgery to replace my jaw and remove the damaged tissue from the right half of my face, my facial nerve was damaged paralyzing that side of my face and scar tissue anchored my tongue severely.

The effects to my speech and appearance were dramatic to say the least. I was a General Manager of a few hotels and speaking and my appearance were really integral to my job. Like Donna, I'm also on long term disability now, deemed unable to continue in the work I prided myself in. In the past year I've redifined myself a bit to change my situation.

In April of last year I came up with a business concept, and formed a small company. At first I would do market analysis for other companies and ended up doing a marketing plan for a regional credit union. I formed a relationship with the CEO of that credit union and instead of taking payment for the plan, I asked the CEO to consider financing any business projects I had in the future, as long as the business plans made sense to her. She readily agreed.

We just obtained our first of many projects through that financing. I've also taken on a few more consulting opportunities, one of which is more for personal satisfaction really, however I'm working towards getting off of long term disability for the long term.

I've had many chats with my speech pathologist about how to cope with my new impediment and am working hard (2x a week) to work on my speech...but mechanically speaking it will never be the same, however it can be "good enough" to make it work for me.

Anyway my dear, I can relate to you somewhat and understand your frustration and what I would say is don't underestimate your worth or confine yourself to a box so to speak. If you don't believe in yourself and your abilities how can you expect others to do so?

Best Wishes

Eric

Eric- That is so awesome! I'm so proud for you forging ahead with new plans A lot of it is confidence. I have tried hard to be brave most of the time but I have my bad days I guess... Its hard for people to get past that initial interaction but I'm getting better at breaking through everyday.

I need to start using speech to speech (711) so that I can handle my own phone calls make my appointments. Call about wrong credit card charges... The whole phone thing is my biggest obstacle.

You are so right! I shouldn't have the mindset that I am stuck here or anywhere.

Thanks for your inspiring encouraging words! Kate

Kate - I think I understand how you are feeling, in a very small way. I had only a partial glossectomy, but in my field and career I have to do a lot of public speaking, as well as constant communication with customers and vendors, and it really gets to me when I realize people don't always understand me. i try to speak slowly and articulate well (my speech therapist was great at helping me with that) but I am still self conscious at times. I can imagine how you feel, and I know too well how we as women can be the worst at making other women feel inferior. (why do we do that to each other?) All I can say to you is that I've followed your progress both here and on your blog and I think you are awesome, brave, and deserve the best life has to offer you. Wish I was in a position to hire you - I bet you are also great at what you do. I really think you will find something soon that will be just perfect for you - don't be afraid to start looking and see what's possible. If you get a job with another company that has healthcare, they have to insure you - that's most of what HIPAA was actually for. And, now with Obama Care - guess soon it won't be an issue. I changed jobs less than 2 years after my surgery - was a little nervous about that, but it's turned out great. and no problems with health insurance at all.
Please keep remembering what an awesome person and role model you are,
Ginny

Kate,

I'll share with you one of my favorite Mark Twain quotes about confidence: �All you need in this life is ignorance and confidence, and then success is sure.�

I love this quote as it sums up almost every successful business owner I've ever met and had the pleasure of knowing. Most of them would admit to you that they wouldn't have started their successful endeavor if they had known what they would face before starting it. But they dealt with issues and obstacles as they came at them and ended up on the winning side.

Think about this, you've faced a cancer that literally half of the people diagnosed with die. You faced death and are here today...what else is there to fear? I was a confident person before cancer (some would say a cocky, arrogant bastard and I would agree) now I'm even more confident if that's believable.

Life is short, play hard and play to win...whatever winning means to you.

As Ginny said, you are inspirational and I might add all sorts of awesome...now believe it.

Eric

Hey Kate
I can kind of relate to some of the apprehension and vulnerability, but our circumstances are quite different. I'll tell my story anyway, cause i think it is a bit of a good news story and thats always good to hear.

I had a partial (not quite half) glossectomy which meant that at this stage (few months post surgery) my speech is a bit sloppy (though much better than i and doctors expected).

Some of my job involves presenting material and training clients and i was wondering how long it would be before i would be confident to get up in front of people and deliver a session.

About three weeks ago, my major project at the moment was at a stage where we had to deliver a bunch of training sessions after hours. The colleague who has helped out on this project while i was MIA immediately said "i'll do half and you do half"...

At first i was a little pi$$ed that he assumed i was up to doing the training and had a few negative thoughts about how inconsiderate it was, but then i changed my mind and thought, well if he thinks i can do it, i cant be talking too badly!

So i did my share.

I sat in the training room after the first session (i had a half hour break between sessions) and amidst feeling relieved i shed a couple of tears. Not unhappy ones, more stunned/stoked/happy/amazed/grateful kind of tears. i couldnt believe that a few months ago i was talking to a doctor about removing half my tongue, and here i was using what was left of it (and a bit of my arm) to succesfully deliver a half-hour training session to a paying client!

a supportive employer has helped the whole process....in Oz we get 2 weeks sick leave annually - my boss has paid me just over 6 weeks sick leave to date with no strings attached.

So i'm pretty lucky...

ps - Eric, your story is awesome.
pps - my next milestone is my first singing gig post op. will let you know how that one goes!

Hi Jon- Oh thanks so much for your story. I'm so happy for you that you got through the training and rocked it! Way to go!!!! No small feat and now that you have that under your belt you can just forge ahead. Your boss sounds like a very understanding and empathetic person.

Yes - it is true that mostly it is just being confident and breaking through that barrier. I am trying to just not let people's reactions bother me. It says more about them than it does about me. I think out of anything that truth has made itself so evident in dealing with all of this. It is pretty amazing how people's true colors really do come out. Right??

I work at a company with 85-90% women and that is hard as it is without having a speech disability thrown into the mix.... especially at a beauty/cosmetics company that is a little bit superficial, old fashioned and dysfunctional. Women can be really horrible to one another and if you are a little vulnerable your toast! There are definitely not any people that I have seen or know of that have any sort of disability -- there aren't even many minorities so I'm not working with the most empathetic bunch that is for sure. I feel that I have been pushed to the point where I do need to stand up for myself and my rights.

Anyways- I've been talking to HR. I finally got my official review and objectives back and in addition to verbally commenting on "my tone of voice".. and saying "its not what you say its how you say it" the review they actually wrote that I need to work on my interpersonal skills, patience, and "tone" when working with the other non-design team members.

When I read that in writing I just got so unglued... I just really feel like they have misinterpreted me. I am a very good natured person.Sure I make mistakes and get stressed out but I handle myself like a professional always. When I have a point to make and someone doesn't understand me I have to repeat myself sometimes and enunciate and emphasize my words. I don't say unprofessional inappropriate things. I don't make rude or uncalled for comments and I need to be given time to respond to people comments and advice and I shouldn't have to worry about when I make a point being interpreted as rude or impatient. I discussed this at length with HR and she just kept saying ... well tone could refer to "body language" or "demeanor" or what you say in an email. UGH! I said sure- I get that but for someone in my scenerio its just really insensitive and hurtful to phrase it that way.

I just find that to be a really poor choice of words to use with someone who has been what I have been through --- its totally insensitive and unkind. There have been several other incidences that demonstrate a general insensitivity to what I have to deal with in my communication difficulties. Throwing me on conference calls where I am expected to communicate and resolve problems. Once with some Austrailians and once with a Chinese IT guy (I mean come on.. isn't there someone else you can ask??..and ther eis they just don't want to do it.) Putting me in "working lunches" where I have to eat and talk and introduce myself to people I've never met before... the list goes on. Its pretty unbelievable. People are totally clueless sometimes.

Then last week my art director and VP bring me in and let me know they are promoting another younger designer who has been there less time than me. I mean- of course I'm happy for her but I felt like they were trying to trap me into getting upset and saying something to support thier comments. They kept saying... "ooooh so do you have any questions or concerns?? We just wanted to let you know since you've been asking about a promotion. I mean what the hell am I supposed to say? I am all for my teammates succeeding but why would you handle things this way? I just so "oh that's great- good!". Then I said - well I just want to make sure I am on track to meet my expectations too. The VP just snapped "... well that's a seperate conversation isn't it?...". I felt the tears starting to well up and just got out of there. I know her promotion has nothing to do with me and my performance it just seemed really mean spirited and was totally disheartening. This is someone who complains ALL the time... calls in sick when she's actually taking a vacation. Its pretty unbelievable. I guess the squeaky wheel gets the grease!

Anyways-- just another tough week on the J.O.B.....bleh...

I am going to get some advice and file a complaint officially though. I have many emails documenting everything and I'm scared to actually do it but I am fed up and I do feel that its the only way to make people behave and respect and assist someone like me who has a hard time communicating verbally. People shouldn't marginalize others who have disabilities its just plain wrong.

I'd really just love to just pack it all in some days.Would LOVE to call in sick but I won't.

Thanks for everyone's helpful advice and words of encouragement.
KATE

Hi Kate,

Reading your post just now made me so angry at the people at your work. I'm sorry but they sound like a bunch of insensitve idiots. We can tell by your posts that you are a warm, compassionate, talented and bright young woman! You don't deserve to be treated that way. I know times are tough these days but have you thought about updating your resume and see what else is out there?

I would be miserable working in that kind of environment. And with all you've been through....it's just not right. I'm in the commercial insurance business and in my opinion you have a very good "employment related practices" claim against this employer. Don't be afraid....seek legal advise and file that complaint!!

All the best,

Shelley