Everything is different after a major illness. Things are different for many reasons - first among them is the knowledge that there was always a chance that you would not come through it. Or that in fighting your illness you might be inexorably altered afterwards. After my 2009 removal of the schwannoma in my spinal cord, I have told people that I am probably about 85% as good as I was, physically, during my best and most healthiest days before the tumor. When something serious happens, there is a good chance that your body will be changed and there is nothing whatsoever that you can do about it. As my doctor told me that I would probably have a chronic softening of the spinal cord for the rest of my life - a condition called myelomalacia, I certainly don't remember feeling upset about it. Because even with continued pain and pressure in my back, and with continued strange feelings in my legs sometimes - I have always preferred to count what I have, rather than dwell on that 15% of ability that I may have lost.
But there is another part to it, something that I have only told a few friends privately - at least up until this blog; and that's the realization that a tumor could occur again. I know one person who has had a schwannoma and a spinal cord melanoma that came after. Jamie Dubinsky, a dear friend and contributor to this blog - has just had her 2nd schwannoma removed. So there is always a feeling - something I would liken to an axe over my head...and it causes me to constantly reassess each day of my life, living with the possibility that a tumor may recur. Now from time to time people say to me "You know that's never going to happen to you again" and I appreciate their intentions, but I don't really understand what they mean by that at all. Because it already DID happen once. I can't say with any certainty that it will not happen again. So I look at every day post-surgery and recovery as bonus time. I realize, with no illusions, that much of what I appreciate could have been taken away - so I find it is actually sobering and helpful to see each day for the great occasion it is. When my son says "Dad let's go for a walk in the neighborhood", 99% of the time we do it. Because I can all too easily imagine trundling my wheelchair beside him if things had gone differently. I am upright. I can walk. I have strong legs and I work hard to keep them that way. I'm lucky.
And speaking for myself only, I do get a little puzzled when people say that this was all part of God's plan, or that his hands guided the hands of the surgeon, that kind of thing. Since I am not religious (I joke to people that I am a Buddhist leaning agnostic.) then I don't have the consolations of religion in my mental toolkit. Mainly because I never have been able to reconcile any idea of a benevolent God with one who would not stop the growth of painful tumors in good people who are in misery for no good reason. I don't see any kind of cosmic lesson to be had here. My body made the tumor, what to do after had to be decided on. Rather, I banked my recovery on the love of my family, and trust in an excellent neurosurgeon and his team. I was not disappointed in either of those things. When it comes to a confrontation of this sort, I think that people have every right to seek the consolations of their conscience. If that means lighting a candle at church, then by all means do so. If that means prayer for you, then pray. But this did not work for me - it was, as mentioned, all about holding on for my family and those who loved me. That was enough for me to make sense of it.
So I celebrate each day, and am happy to be here to do it. My wife and I are about to have our 2nd son, and I'm looking forward to running in the park with both our boys! And perhaps one day if he wants to know about that scar in the middle of my back, and why my left knee buckles, then I'll tell him the story. It isn't a hero's tale. Not by a long shot. But more a story of living on bonus time. And maybe, just maybe, he'll come to see that, in reality, it is ALL bonus time. From the cradle to the grave. It's all bonus time. And I hope he lives that way.
Neil
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