Author Topic: An inspiring story: The Gift  (Read 5974 times)

MZB475

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An inspiring story: The Gift
« on: October 09, 2010, 01:34:04 pm »
A friend just sent me this link and I had to share it with everyone. just an amazing way to "rethink" our ANA's. Enjoy!

http://www.ted.com/talks/stacey_kramer_the_best_gift_i_ever_survived.html

Laura B
Diagnosed 2008
Wait and Watch--blessed to have this gift :)

Jim Scott

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Re: An inspiring story: The Gift
« Reply #1 on: October 09, 2010, 01:46:10 pm »
MZB475 ~

Although Stacey Kramer delivers a poignant message about the 'gifts' a brain tumor can 'give' you, I'm afraid that not everyone has the same kind of outcome, support system and ultimately, her positive view of the experience.  However, her message is commendable and the 3-minute video worth a look.   

I've moved the thread to the AN Community forum which is more appropriate. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Tod

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Re: An inspiring story: The Gift
« Reply #2 on: October 09, 2010, 02:03:37 pm »
I wouldn't call my Bob a 'gift', but I do feel it is the best thing that could have happened to me at this point in my life. But I would not wish the experience on anyone else.

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

Goldie

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Re: An inspiring story: The Gift
« Reply #3 on: October 09, 2010, 06:21:57 pm »
While I don't think I would call an AN a "gift," I've found many positives on my AN journey (mostly people-related) and I think it's important to remember those, especially on those days when things are not so great.  I commend her for sharing her story and found it inspiring myself.

Denise D.
« Last Edit: October 09, 2010, 06:58:58 pm by Goldie »
GK 5/06 at Mayo for small AN after balance and slight hearing issues.  Progressive hearing loss following GK.
3/09 - facial spasms began.  MRI shows tumor growth.
9/09 - MRI shows further growth.  "GK failure."  Translab 10/1/09 success!  BAHA 10/8/10.

leapyrtwins

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Re: An inspiring story: The Gift
« Reply #4 on: October 09, 2010, 09:45:21 pm »
My acoustic neuroma was definitely a gift - and I've referred to it that way numerous times.

I've often told my neurotologist that I truly believe I was "gifted" with an AN for some very specific reasons - and that as a result of that gift it is my "job" to help others with ANs and with hearing issues.

It's one of the reasons I became a Cochlear volunteer and one of the reasons I advocate for BAHA and CI candidates.  It's also why I'm on the ANA's WTT list, why I donate money to the ANA, and why I've chosen to sponsor ANA symposiums.  It's why I'm doing the HLAA (Hearing Loss Association of America) Walk to raise funds for a pediatric audiology program.  It's also why I stick around the Forum.

Life is what you make of it - and my AN provided to me that I needed to make more of my life.  I view it as kind of a wake-up call from someone up above.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

ppearl214

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Re: An inspiring story: The Gift
« Reply #5 on: October 10, 2010, 06:48:28 am »
Life is what you make of it - and my AN provided to me that I needed to make more of my life.  I view it as kind of a wake-up call from someone up above.

Aye-men, sista..... why do you think I'm still around to help those around me when I really don't have to?  My AN (and other ailments), to me, are certainly not a gift, but most definately a wake-up call to grab life while you can, do for others as sooooo many have been here to help support me (including MZB475, the originator of this post :) ) and life is what you make of it.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

moe

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Re: An inspiring story: The Gift
« Reply #6 on: October 10, 2010, 02:16:12 pm »
That was an uplifting video clip. She is so blessed to have all that support.
As Jim posted:

"not everyone has the same kind of outcome, support system and ultimately, her positive view of the experience"

I can relate to that.

I joined the ANA forum so that i can help others going through the "gunk." and be part of a support group. You name it I've had it (except for headaches, wonkyness)

But personally and truthfully, this tumor has robbed a part of me that I miss a lot. My spunk, joi da vie, and ability to hear and sometimes even think clearly (oh yea the tinnitus/facial paralysis too) have taken a nose dive.
I am a strong person and am still on the mend, 4 years later, with more fun to come and keep on truckn.

I'm hoping that i can some day refer to this thing as a GIFT and really begin to be of service to others. :)

Still truckn,
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

lori67

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Re: An inspiring story: The Gift
« Reply #7 on: October 10, 2010, 03:46:17 pm »
Have to agree with you, Jan.  While certainly not a gift I had on my wish-list, I think I've gotten more benefit from the AN than I would have the Lambourghini I've been asking Santa for for some time now.   :D

I have definitely learned to slow down and take time to smell the roses and to take nothing for granted.  I'm not sure what else would have taught me that.  God knows there were enough subtle messages along the way, but apparently I need more of a straightforward kick in the pants.

Yes, there are things I could do without, but I'm alive and well and able to watch my kids grow up, and that, in itself is the best gift ever.  And being able to lend a little support to someone who has been presented with a similar "gift" makes me realize that someone had a reason for giving me my "gift".  It really helps me to keep things in perspective like nothing else has before.

Thanks for sharing this, MZB

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

nanramone

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Re: An inspiring story: The Gift
« Reply #8 on: October 10, 2010, 09:16:06 pm »
My AN changed my life. I was backed into a corner because of it, and it spurred me to action and am now in school, with the goal of studying fine art. Though I've been a  very talented and productive visual artist all of my life, I have lacked academic training, which has kept me from full expression of what I do better than anything else.

The AN brought tumultuous change into my life, and in a short period of time, taught me what is important. Yes, it has been a gift that continues to give - it has been a catalyst for remarkable transformation of my self...

Support from friends has been wonderful. I am closer to many people than I was before, as they see my optimism and this has a positive effect on others.


FLsunshine

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Re: An inspiring story: The Gift
« Reply #9 on: October 12, 2010, 07:32:57 pm »
Gift?  For me it was more about clarity of what my life had been and a hard look in the mirror. At the time I was married to a very emotionally and verbally abusive husband for 10 years.  The day I came home and told him about my AN was very illuminating.  I recall his words as if it was yesterday... 'oh great now I'm going to be stuck having to take care of you.'. I truly believe God gave me this gift/clarity so that I could finally see my ex for the character he truly was.  The next day I told him that I'm strong enough to go this alone and that he had no place in my life anymore.  Four years later I am remarried to an absolutely wonderful man and we have a great family life.  It may not have turned out that way without the AN news that shook and woke me up.
3mm AN diagnosed in 2006
w&w with escalating symptoms
slow growth - at 4mm in 2010

moe

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Re: An inspiring story: The Gift
« Reply #10 on: October 12, 2010, 09:16:36 pm »
WOW,What a great story FLsunshine!  Funny though you don't need anyone to "take care" of you,but you are now blessed with someone to share the rest of your life with, with its ups and downs.
Congratulations on your happier life  :)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

nanramone

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Re: An inspiring story: The Gift
« Reply #11 on: October 12, 2010, 10:07:41 pm »
FLsunshine - I love your story, and your courage - thanks for sharing!

QRM

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Re: An inspiring story: The Gift
« Reply #12 on: October 12, 2010, 10:52:29 pm »
Calling it a “gift” and crafting a very good marketing story is just the way that lady has chosen to deal with her situation. We approach good and bad news differently, our reaction is sometimes due to cultural conditioning, or often it is in our genetic make up.  

Doc Friedman at the House clinic noticed how people fair after the operation is very much dependent on their personalities.  Those with the “glass is half full” outlook on life seem to do a lot better than those who are the “half empty” sort.

A lot of people have often said how I am always so lucky in life. I seem to land on my feet no matter what happens.  I think I can safely say any person having the need to be on this site is hardly what I would call “lucky”  but I always remember the old  Confucian  proverb, “Those with a lot of  luck do not have everything, they just make the most of what they have.”  

My Glass is half full view of this whole AN lark ?  I am so glad and “lucky” it struck me and not any of my family or friends.
« Last Edit: October 13, 2010, 01:58:47 am by QRM »
2.5 cm x 1.1 cm AN 30 Oct 08  Singapore Gleneagles Hosp.
Translab on  29 Jan 09 Dr. Friedman & Dr. Schwartz of HEI
Surgery a success!! had wonky head for a while and odd tastes
Everyday things are improving and getting back to normal.

moe

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Re: An inspiring story: The Gift
« Reply #13 on: October 13, 2010, 08:46:43 am »


  I think I can safely say any person having the need to be on this site is hardly what I would call “lucky”  but I always remember the old  Confucian  proverb, “Those with a lot of  luck do not have everything, they just make the most of what they have.”  

My Glass is half full view of this whole AN lark ?  I am so glad and “lucky” it struck me and not any of my family or friends.


SO true! My glass is half full, (usually) and I honestly think other family members or friends would be in a different place if they have had to deal with the things I have dealth with, and continue to. So I am "lucky" it is me and not them!  ::)
 My progress  with my follow up procedures is just sooooo slow, being in the military system, but it is coming together. The Gift that keeps on giving....
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

nanramone

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Re: An inspiring story: The Gift
« Reply #14 on: October 13, 2010, 08:51:29 am »
I agree with the idea that personality plays a big part in our recovery. Worse things can and have happened in my life, and I've come through all of it well, because that's who I am. Whether her story is seen as a marketing tool, or a valuable message for us to learn from, I think this speaker is telling us to look for the good side of things. And that's a good message that's worth repeating!