Hello again, Renee:
Thanks for the updated post.
I'm sorry you felt a bit beleaguered and 'picked apart' by earlier posts that commented on your YouTube video but when you choose to place a video on the internet, you have to be cognizant of the fact that many people will view it and none of them will know you. That removes context and can result in misunderstandings. The same applies to internet message board postings. We're all somewhat anonymous but that gives us more latitude to be honest about our fears, worries, frustrations and joys - and to criticize when we feel some skepticism is justified, which was the case here. I can tell from your post that you've already recognized that this forum is populated by a lot of very compassionate people. Adversity tends to have that effect. One either becomes bitter and resentful or more open, hopeful and compassionate. You're a perfect example of that, Renee. Placing your video, paralyzed face and all, on the internet to share your story in a graphic way and to offer hope to others in your former situation is commendable. That your video comments generated a few questions and skepticism from other AN patients, close to the issue and knowing that mortality from acoustic neuroma tumors is ridiculously low, should not upset you. No one here knows you personally and most of us tend to have a certain degree of skepticism regarding almost anything posted on YouTube.
You're correct in reminding us that you are a peer. That is exactly why your video was of interest to us and why you were welcomed here. You are also correct in pointing out that you had the courage to show your face (on the video) in a semi-paralyzed condition, which was clearly difficult for you, as one would expect. You seem to feel slighted that no one commented on that aspect of the video. Actually, we did, by praising your courage. Apparently you overlooked those comments or, more likely, did not apply them as they were intended. I trust that misunderstanding is now past us. You have, indeed, had suffering in your life, Renee. So have we all. The majority of the people posting here are somewhat older than you and, because of having an acoustic neuroma tumor, have had to see successful careers sidetracked, good jobs lost and even marriages tested more than they should be. A few have even gone into depression. Some had friends basically abandon them because they didn't understand what the AN patient, who 'looked fine', was really going through. Trust me, we know about suffering, Renee. We really do.
I stand by my opinion that someone totally ignorant of acoustic neuroma tumors, watching your compelling video - as it stands - would come away from it assuming that an acoustic neuroma diagnosis equals a quick death and only a miracle (and iron will) could prevent it. That would be as unfortunate as it is untrue. Yes, your story is certainly inspiring because it has a happy ending but I can tell you from experience that many people will only see/hear the 'two weeks to live' part of your video and then jump to mistaken conclusions regarding the mortality rate associated with an acoustic neuroma. I trust that your promised addendum (to your video) will clarify the matter and bring a better level of understanding about the - as you stated it - unique situation you were in at the time of your diagnosis. I want to add that I don't view folks who suffer debilitating symptoms (as you did) and then receive a diagnosis of an acoustic neuroma tumor and freak out (for awhile, anyway) as weak or otherwise lacking in personal courage. They are simply human.
We come from very different backgrounds (and eras) but I think we share the same goal, Renee: encouraging those diagnosed with an acoustic neuroma tumor. Once again, I regret any misunderstandings and subsequent resentment you may have experienced as a result of comments made on this message board regarding your video, but, as I mentioned earlier, public exposure to an 'audience' that knows little-to-nothing about you can sometimes bring unwarranted (and unwelcome) criticism. The folks that post here are truly compassionate but also hyper-sensitive to mis-information regarding AN tumors. They have good reason to be. Fortunately, you took the time post here and clarify your experience for us. We truly appreciate that, as well as your good wishes for us all. Of course, we offer the same understanding and encouragement to you. Now, don't be a stranger!
Jim
