Phyl:
I think part of the problem many of us have adapting to our personal 'new normal' is that the majority of AN patients are middle-aged (or close to it) and have spent their adult lives without having to deal with the issues that currently confront them. Now, they can't balance well or their face is numb on one side and alters their appearance so that they no longer 'look like 'themself'. SSD is a big adjustment for all of us, with or without hearing aids (BAHA or otherwise). Headaches and/or an eye that won't close properly and has to be lubricated almost constantly is quite a challenge for anyone, harder when you're confronted with the challenge at 40 or 50 years old and not quite as resilient as you were a few decades ago.
AN 'complications' - whether from surgery or radiation - are problematic both physically and emotionally. The physical can usually be dealt with at some level, although headaches can be maddeningly stubborn and SSD can only be partially alleviated with hearing devices. Some of us have only minor issues to deal with and we tend to take them 'in stride', as it were, knowing how much worse off we
could be. Still, my SSD and (mild) tinnitus, the (apparently permanent) 'numb' spot on the side of my tongue, my occasional itchy 'dry eye' along with my inability to regain 100% of my ability to balance is a bit frustrating and yet, invisible to others and, compared to what some AN post-op/radiations patients suffer, hardly worth complaining about (except, occasionally, to my always-sympathetic wife). Perhaps it's a bit easier for me because at my age (66 next month), I don't have to deal with work issues, run after young children, or beg off racquetball games.
Even so, I totally believe in optimism. I never ask
'why me?' As a Christian, I trust God to guide me through whatever comes and I realize that this life, in this body, is temporary and fleeting. As the old Christian hymn says: "This world is not my home". Basically, like most Christians, I believe I'm just 'passing through'. This belief helps me (and my wife, who has multiple health issues) deal with things we have to endure while we're in this body. For the non-spiritual folks, simple positive thinking and steely determination can also go a long way. I truly believe that our message boards are a great resource and a welcoming place for all AN patients, pre and post-op/radiation. Because ANs are relatively rare, we're a source for sometimes hard-to-find information beyond the strictly clinical and of course, a very supportive 'family', of which I'm proud to be a small part.
I've written before about my respect and admiration for those who deal 24/7 with some of the more difficult aspects of AN post-op/radiation problems, including facial paralysis and searing headaches. I'm not so sure how well
I would handle such things but I'm in awe of those who
do handle these problems with grace and aplomb. They're an inspiration to us all. Although we very much welcome positive outcomes and success stories, I suspect that the day-to-day perseverance and strength of those AN post-op patients dealing successfully with 'issues' are the best kind of encouragement of all because they demonstrate a positive mindset in action. They either see the 'light at the end of the tunnel' (whatever that may represent) or have made peace with their 'condition', especially if it is intractable, as, unfortunately, some AN post-op problems can be. Either way, these folks show us all how it's done - and I salute them.
Jim
