Four years later..........

[Pembo]

 I celebrated my four year anniversary of surgery on June 3. It was a day of mixed emotions. I can still get angry about having the darn AN in the first place and all the after effects of surgery. However I can't believe all I've accomplished since the surgery. 4 years ago I survived a 20 hour surgery, 16 days in the hospital and rehab and a summer of learning to be me again.  I can still remember the feeling of the wind on my face and seeing how green everything had become in my two weeks away on my ride home from the hospital. I have some very vivid memories of those days........

My tumor was 4 cm and very sticky. I woke up to hearing loss, facial paralysis and numbness. I remember trying to call my husband after being moved to the rehab and being angry that the phone didn't work!!! Until I tried putting up to the other ear....that was when I realized I was deaf in one ear. I remember the fear of having my kids come visit. I was afraid they would be frightened by my appearance as I was. They came to me tentatively but as a 8, 5, and almost 2 year old....they loved me all the same.

Four years later I still have some facial paralysis and facial numbness. I'm told that you can't tell however I think I look very different and I don't know how other people can't notice! The sensation and movement is coming back ever so slowly and it is only in looking back that I can see the recovery. My eye blinks but not as well as the good one. I have a punctual plug, use Restasis and last summer I was able to wear contacts again. The conditions have to be perfect for me to wear contacts but I can do it. My balance is so much better and with our new Wii-Fit game I have balance activities to practice. My kids are so much better but I'm working on it. I have a BAHA and it is not my hearing back but it helps in many situations. I can predict the weather with my low grade headaches.

For those of you new to the AN Journey, I can tell you from my experience, it has been quite a journey. One that was made easier by the AN Forums. It has been great to have a place to come to where people really do understand exactly what you are going through, emotionally and physically.  Learning about the grief cycle has helped me and I accept the fact that I still sometimes have bad days.

This is not a journey I would choose. I'm not the kind of person that believes everything has a purpose but I try to look for what each experience teaches. I've learned to be more empathetic and I've learned to not wait for things to happen but to be proactive and go get what I want or need. My motto through this has been Stay Strong. It is hard to be strong some days and that is okay. However I'm a brain surgery survivor and staying strong is what I do!

[satman]

hell of a story pembo,congrats ! It's a long tough road to recovery for some of us.

[yardtick]

Pembo,

What a journey!!  Thank you for sharing. 

Anne Marie

[Debbi]

Pembo-

What a story - and thank you so much for sharing it, along with your feelings.  As someone who is newly on the recovery road, hearing stories like yours actually does help. 

I wish you continued recovery and many peaceful moments along the way.

Debbi

[leapyrtwins]

Pembo -

congratulations on your 4th year anniversary and also on the progress you have made.  I'm sorry that your journey has been difficult, but it sounds like you have made tremendous progress and you should be very proud of yourself.

Just hearing that you had a 20 hour surgery gives me a little perspective of what you have gone through.  You are definitely a survivor 

Best wishes for continued improvement.  Stay strong and be patient.

Jan

[wendysig]

Hi Penbo -
Thank you for sharing your story.  As a newcomer to this journey, it helps to see how people handle this experience down the road.  It sounds like this journey has been a difficult one for you  but one that has made to stronger.  I used to think things happened for a reason, but I can't imagiine the reason this would happen to anyone.  It certainly tests your strength of character and makes you reshuffle your priorities, but I can't believe that this was part of a plan for our lives.  You are right about this being a place you can come to talke to people who understand what you are going through.  I talk to my friends and family outside this forum and they are sympathetic but they do not truly understand what I am going through.  I find the people here to to a wonderful source of support and information.  Communicating with them fills a need that even my closest friends and family just miss.  There is nothing like talking or commiserating with a kindred spiirit.  I wish you continued good health and improvement.

Wendy

[Jeanlea]

Thanks for sharing your story, Pembo.  You have  been a real inspiration to me because I also woke up with facial paralysis and numbness along with being deaf in one ear.  Hearing that you were getting some movement back gave me hope that I would get some back also.  I do have some back.  Like you said, it's not the same as before but it is better.

Jean

[cmp]

This is not a journey I would choose. I'm not the kind of person that believes everything has a purpose but I try to look for what each experience teaches. I've learned to be more empathetic and I've learned to not wait for things to happen but to be proactive and go get what I want or need. My motto through this has been Stay Strong. It is hard to be strong some days and that is okay. However I'm a brain surgery survivor and staying strong is what I do!

Wow, I can't think of any way to say it better!

thanks so much for sharing your story and the really wise lessons you've drawn from your experience. I really like the distinction you make between looking for the "purpose" in this AN challenge and accepting it as a (forced but valuable!) opportunity to learn. I, too, have very vivid memories of my surgery, though it was 20 years ago (and no doubt my imminent surgery is responsible for stirring things up again!), and think I still haven't reconciled my self-image to how other perceive me...

What you say about having difficult days long after you thought you were "over" them--and not being down on yourself for having them--is so important... In addition to a stiff upper lip (wrong metaphor, maybe, consider some of us literally can't pull it off?  ), I find that staying strong takes insight and compassion towards oneself as well as others...

Congratulations on your 4 year anniversary, and may you continue to move forward with sure steps on your journey!

[lori67]

Pembo -

Congratulations on 4 years!  You are a survivor AND a true inspiration.  It's nice to be able to follow those that have proven you can get through this - and to hopefully to pass that message along down the line to the "newbies".

Lori

[Jim Scott]

Pembo:

Allow me to add my thanks for your perceptive, well-written post.  If we graded posts, yours would have 5 stars. 

Like everyone else on this thread, I truly regret that you've had a long and sometimes challenging recovery.  I'm also heartened by the fact that you're improving.  I pray that improvement continues apace and you're back to where you want to be, soon.  You deserve that, as all AN patients in recovery do.

I'm a simple man so I won't attempt to delve into philosophic issues but I do believe that whether or not our AN tumors had a purpose, it's how we respond to the AN experience that really counts.  Some don't do well at all, some barely cope but some rise to the challenge with a sense of optimism, determination and strength of character that is often inspiring beyond mere words.  We have many folks like that gracing these forums and with your post, we certainly know now that we have another.

Happy (surgical) anniversary and thanks, again.  May your future be so bright you'll need shades! 

Jim

[Yvette]

Congrats on your anniversary Pembo, You're a tough cookie!

Blessings and continued recovery to you,
Yvette

p.s. I thought my cell phone batt was dead, I laughed and laughed at forgeting I was deaf in one ear.  But sometimes I cried in the closet.

[nancyann]

Pembo:  Your words touch my heart....    Today, during work,  I was upset over having my eye weight surgery postponed - I said to myself ' be grateful for all you have, the beautiful blue sky, the ability to see & hear '(with one ear), & as I walked from one building to the other, I became thankful for 'the warm breeze on my face' - this is what you felt - I felt it too today.

Congratulations on living,  please continue......

Always good thoughts,   Nancy