Stop telling me to be grateful I'm alive!

[Unjaded]

This is something I posted to another forum back in February.  I'm doing much better now but still dealing with frustrations.  I know I'm not the only person that feels this way sometimes and just wanted to share my thoughts.

"Of course I'm incredibly thankful to be alive! I've said it over and over again because people make me feel guilty for complaining about my facial paralysis and the pain that goes with it. Why am I not allowed to voice my frustration and pain? Is there some unwritten rule for brain tumor survivors that says we should just be thankful we're not dead and shut the heck up about the other things, mentally and physically, this tumor does to us?
I've been through a massive trauma to my brain and facial nerves and as a result my life is completely changed. I'm 43 yrs old and look like a stroke victim. The entire right side of my face is paralyzed and we have no idea if it will ever come back. My eye burns like it's covered in acid most of the time, I have sharp electrical shocks hit me at random times, I can't drink out of a cup without the liquid running back out because my mouth is slack on one side and can't hold it in, I can't smile, not even closed mouth, without looking like a troll, my vision has went to crap so I'm no longer allowed to drive at night. Even daytime driving is a challenge sometimes because my eyes will suddenly tear and slam shut until I can get pulled over to wipe them out. My job of 15 yrs, that I love, is becoming increasingly difficult due to the strain on my eye from the computer. I've lost a butt load of self confidence, and some days I want to whine and gripe about it, ok? Is that so bad?
I feel like I'm grieving for the old me but no one will let me talk about it without saying "At least you're alive." Yeah, I'm alive you stupid idiots! Alive and suffering in pain. Some days it gets the best of me and I want to gripe about it just to relieve the frustration. So next time just keep remembering that we've already established that I'm ecstatic to be alive and with my family but I still have many issues I'm trying to work through and you listening to my gripes helps immensely!"

I got many positive replies from people and even a few asking me what they should say.  Hopefully it changed someone's perception on the struggles we deal with even after the tumor is gone.

[Tod]

Preach it.

It is important to be able to honestly express how you feel and family and friends should provide a safe harbor for that. What is dangerous and unhelpful is letting it become a negative lifestyle.

By all means though, everyone should articulate what their experience is or has been like. It ain't all fun and games. It darn hard to be happy and grateful while suffering or struggling to do the very basics of life.

-Tod

[Crazycat]

Unjaded,

You can vent to me all day because, while I wasn't hit as hard as you were, I know what you're going through because I experience those same symptoms in varying degrees.

Also, I've come across the same attitudes from others at one time or another. The truth is nothing can be fully understood psychologically until it is experienced firsthand. In other words, no one really gets it until they themselves are steamrolled or struck by a proverbial bolt-from-the-blue or at least affected by it collaterally.

[cassie]

I know how you feel. I miss the old me. And, funny, but before all this happened, I never really liked the old me and felt like I needed to change/improve things but now I would give anything to have that old me back.

[Aussie AN Grad]

And while you're at it stop tell me this is "the new normal" 

Funny I was just yesterday reflecting on people's reactions to what I've been through over the past 18 months (and continue to). Telling a friend over decaf coffee about managing my life to best live with the impacts of a blood clot in my brain (minimising and managing stress, lots of moderate exercise, no alcohol or caffeine - whoops there goes the fun stuff) she zeroed in on the stress and said well that's something good that's come out of it, you are avoiding stress. Well, yes. But I wasn't actually stressed before this. And not many 48 year olds I know HAVE to have half hour naps every afternoon.

I think people just need to see something good and positive in the hard and at times horrid process we go through with AN surgery/recovery. Otherwise they find it too difficult to process and none of it makes sense. They can't understand, and that's OK. I hope they are never in the situation where they will. But sometimes they should just say nothing. And pay for the coffee

[ANGuy]

I'm going to be a little contrary to others in this thread.  Frankly, I think this type of thing IS normal.  48 and you need a nap, I've taken a nap every day of my life.  Tinnitus?  I've had tinnitus my entire life.  Both ears, even when I was 4 years old when I didn't know what it was.

Everybody has SOMETHING!  My mother had Grave's disease when she was 40.  Who gets that?  My father had prostate cancer.  My stepmother had lumps in her breasts that had to go and skin cancers that had to be cut out.  My stepfather has to take rat poison every day for his heart.  My mother-in-law had half her thyroid taken out, my previous MIL had her entire thyroid cut out.  Manic depressives, addicts, seizure disorders,  Traumatic battle injuries, people I had coffee with that were shot to death the next day, my playmate at age 5 who crashed and died on his bicycle, a teenager with pancreatitis, autism, ALS (Lou Gehrig's Disease), multiple sclerosis, it goes on and on and these are all people I know personally.

[mattp]

Mate, I'm 28 and half my face doesn't work - '**** happens' is my perspective. I have complete paralysis on my LHS. Not ideal for a 28 year old eh?

There's nothing you can do about what was in the past, so my advice is to look on the bright side and look at what your options are. I've replied to a few other people, and pointed out that I have had nerve surgery that has reanimated my face to the point that I can now smile if I bite down. There are ways to move forward and ways to alleviate your frustration. I'd suggest looking into those ways if your appearance or your pain is affecting you so much on a day-to-day basis.

Best of luck.

Matt

[MDemisay]

Dear Unjaded and All,

All who were affected on this site can feel your pain to some degree! 

(I am not Bill Clinton!)

Who are the unaffected to tell us how we should be feeling? You are right to let them know, in NO UNCERTAIN TERMS that unless they have "walked in your shoes" that they should keep their opinions to themselves! That being said tell them directly what they can do to help you. Most people will correct themselves and apologize, if they have offended you. Or if they are acquaintances or "fast friends" they will adjust who "they" want to interact with. Be ready to be dropped, in fact expect it,

 Life is sometimes cruel like that. It is something that is hard to learn, but it tells who is kind and who is not.

That can be a blessing, trust me! On this site, you will be BLESSED with kind and genuine people, THANK GOD! I do everyday!


Keep your personality intact and speak up to those who tend to diminish this accursed affliction! We will not be silenced!

Mike



 

[Jill Marie]

Mike I agree, Who are the unaffected to tell us how we should be feeling? As you say until they "walked in your shoes" they can not fully understand what we have been through.  I realize that everyone has issues to deal with but that doesn't make what we are going through any easier.  Sometimes it nice to just be able to vent without being criticized for doing it.  Have a great weekend, Jill

[MDemisay]

To all,

As far as I'm concerned everyone should be grateful that they're alive! It is too easy to say that!

A person who is not going through 'our collective pain" (those suffering through with whatever pain) shouldn't be placating others with a simple phrase like that, it's annoying and frustrating! It shows their simple stupidity. It is inane and should be challenged>

A simple "what the hell does that mean?" should do it.

Mike

[Mickey]

Iv`e gone to many meetings and have met and communicated with alot of AN patients over my 7+ years W+W. I have been deeply humbled and proud to say that  Iv`e never met one who I didnt`t admire. To express yourself is beautiful and is very understanding especially to someone who walks in your shoes. I believe lifes experiences all have meaning and purposes probably most of that will be figured out afterlife. Stay as strong as possible never give up doing all you can to improve your conditions. You may be suprised what the mind can concieve the body will achieve. Many prayers with my AN family, Best wishes, Mickey