There's a great Facebook page for people with acoustic neuromas—Acoustic Neuroma Friends. It's like a never-ending twenty-four hour a day support group where you can find answers to all kinds of tumor-related questions. One thing that's quickly revealed by reading the posts is that everyone reacts to this situation differently and all recoveries are different—some people cope incredibly well, others are left devastated for the rest of their lives.
I liked this very positive post by Kevin Watts which speaks volumes about having such a tumor when you're young. What a recovery he's had! In a later post, he states that he's back to music and has adapted to his SSD.
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I liked this very positive post by Kevin Watts which speaks volumes about having such a tumor when you're young. What a recovery he's had! In a later post, he states that he's back to music and has adapted to his SSD.
Post by Kevin Watts
For the newly diagnosed:
Hi all, I thought I’d take a moment to share my story and philosophy with you, ESPECIALLY for the benefit of those of you who have just been diagnosed, are scared and are wondering what the road forward looks like.
The top picture was taken two days after my surgery in Dec ‘16 to remove a 4.2 cm AN. I was scared, sad, and contemplating my new normal. Single sided deafness, paralyzed face, dry eye, persistent headache and the inability to walk. All alone in my hospital ward, I did not know how I would end up. It was a rough time.
Fast forward to 18 months later, the bottom pic, and I want you to know that you get better. And IT gets better. I’ve never been stronger, fitter and maybe even happier. They say that the difference between who you are and who you want to be is what you do. In my case, I decided to meet my highest suffering with my highest hope. I trained my body daily and my mind as often as possible, to deal with my new normal. I sought out the right books and podcasts, tried to eat the right foods, found the right trainers and promised myself to never force my body to ‘recover’ again. Instead, lesson learned, I was going to shift to the front foot this time.
These are the things that worked for me, and I know that my condition, situation, and experience may be vastly different to yours and others; but the point remains - I got through it, and so did others, and so will you.
We have been dealt a strange hand, those of us with these rare and exacting tumours. There is irony in it, as even in the greatest of horrors, irony is seldom absent. As for me - I think of the scorching irony of life to take my hearing, being a musician and a former pilot. It is a reminder of the paradox of life in general. How strong and fragile it is at the same time. How cruel but rewarding at the same time. And because it is both, we get to choose which of those two meanings we want to ascribe to the irony. And that’s the greatest lesson I learned in all of this.
For the newly diagnosed:
Hi all, I thought I’d take a moment to share my story and philosophy with you, ESPECIALLY for the benefit of those of you who have just been diagnosed, are scared and are wondering what the road forward looks like.
The top picture was taken two days after my surgery in Dec ‘16 to remove a 4.2 cm AN. I was scared, sad, and contemplating my new normal. Single sided deafness, paralyzed face, dry eye, persistent headache and the inability to walk. All alone in my hospital ward, I did not know how I would end up. It was a rough time.
Fast forward to 18 months later, the bottom pic, and I want you to know that you get better. And IT gets better. I’ve never been stronger, fitter and maybe even happier. They say that the difference between who you are and who you want to be is what you do. In my case, I decided to meet my highest suffering with my highest hope. I trained my body daily and my mind as often as possible, to deal with my new normal. I sought out the right books and podcasts, tried to eat the right foods, found the right trainers and promised myself to never force my body to ‘recover’ again. Instead, lesson learned, I was going to shift to the front foot this time.
These are the things that worked for me, and I know that my condition, situation, and experience may be vastly different to yours and others; but the point remains - I got through it, and so did others, and so will you.
We have been dealt a strange hand, those of us with these rare and exacting tumours. There is irony in it, as even in the greatest of horrors, irony is seldom absent. As for me - I think of the scorching irony of life to take my hearing, being a musician and a former pilot. It is a reminder of the paradox of life in general. How strong and fragile it is at the same time. How cruel but rewarding at the same time. And because it is both, we get to choose which of those two meanings we want to ascribe to the irony. And that’s the greatest lesson I learned in all of this.
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I wish I could post before and after pictures of myself showing an amazing recovery like Kevins. Mine has been pretty good, much better than many others treated by radiation but the older you are at diagnosis, the longer the recovery, if at all. The biggest challenge for me—the most difficult to cope with has been single sided hearing. My new earrings may help. I wear the NO earring on my left side and the YES earring on the right side.
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