Sometimes the answer to something fairly complex is right in front of you. These days we just have to take a moment, and hopefully stop looking at our gadgets, and realize the obvious. I was thinking about all this as it regards recovery from illness. When you meet people who have suffered something similar to you, there is a natural tendency towards shop talk. Ie, what medications you find have worked for you....how you manage chronic pain afterwards...or what kind of experience did you have with physio-therapy afterwards. This is the case frequently with Schwannoma survivors, and that is all well and good - and natural. Yet there is another element that looms large over one's ability to recover from illness, and that is the moral support from family, friends, and loved ones.
I should say that one of the things I hear most often, as the coordinator of the "Schwannoma Survivors and Schwannoma Fighters" Facebook page, is how grateful people are for the support of other survivors that are a part of the page. Kinds of comments like "I am so glad to talk to people who really understand"...and "Thanks so much for doing this" etc. What I realized in my countless conversations with these wonderful people is that one of the things that they value most is the moral support from other people who have been through the same experience. I told someone it might be a little like the feeling of kinship that soldiers have if they have been to war together - but in our case, the war was in our own bodies. It has been a happy and humble journey, on my part at least, to feel the kindness and warmth coming back at me from people who now have a way to talk to others who have been through this. And there is a tone almost of relief - that intangible moral support is something that is, I think, not talked about enough.
I have told many Schwannoma Survivors that in my worst moments, in late 2008 and early 2009 - I didn't much care about anything. Just simply getting through one day and onto the next was a task that required every ounce of my energy, both mental and physical. I didn't care about my paintings - which have been my life's work. I didn't care about those beautiful places I was sure I would never see. Even the presence of my extended family, who I all love dearly, receded into the background when each day just became a grinding, grueling struggle against constant pain. When I think back to what sustained me, it was really only two things; my lovely wife, and our baby son who was born in March of 2009. Little else mattered. I felt like an airplane descending, and I knew that when I finally hit the ground, I would be in a wheelchair and life would be unalterably different. But my wife kept at me. She kept me going to Doctor's appointments. She kept me pushing on, even when I was miserable. And our beautiful little boy, Liam, needed only his smile and his being there to remind me that I had a home team worth fighting for. In the end, in all came down to my wife and son - and to be honest, and I have told some close friends - and I believe I am saying this publicly for the first time now; if it weren't for those two people I would have had no qualms whatsoever about ending my life, by one means or another. And I value life above all things. I am not religious so I live on the assumption that this may well be the only life we have. I would not waste it or throw it away on a whim. But when pain has ground you down - those thoughts do creep in. A pain sufferer's mind is ruled by that one inescapable thought...I want this to STOP.
Fortunately, my tumor was found and removed and I have lived not only to enjoy my days with my wife and son, but in November of this past year we welcomed our second son into the world. I now feel that I could be broke and on my last penny and still be a rich man in this world.
So it is my hope that if there is someone out there fighting a hard fight, I hope you have your family or someone you love and care for and who do the same for you. And I hope that there are people in your life that don't let you go when you are upset - who tell you and believe that you can conquer any mountain before you. I have said before that you can do anything if you are loved - and whatever you do if you don't have love in your life won't mean diddly shit. I hope we can all remember the value of not just the empirical knowlege, but the moral support and no-strings attached friendship that gets us through rough times.
Many times in the past I have done things for people and they would look at me like "Uh, thanks, but what's your deal?" I actually enjoy just trying to do good with NO expectation of reward. But in fact, I think what the Dalai Lama said is true - that trying to live a life guided by kindness and compassion is as much for yourself as the others you help. My payment for doing good - or trying to, is that good feeling I get when I put my head down to sleep at night. I don't expect a pot of gold on my doorstep. And I am suspicious of people who do good with clear expectation of reward. No, I try to do good - to offer friendship and moral support because it makes me feel good. And maybe...just maybe, it makes this venemous world a little more tolerable for people who want to live well in it.
So I say hat's off for that most intangible kind of support - that slap on the back. That hug that you weren't expecting. That extra beer you had with your friend when you could tell that they needed to talk. And to that grateful, kind look that says back to you "I'll be there for YOU if you ever need ME." Much of the world makes a virtue of being tough - and that of course has it's uses. But I for one think that people who strut around and act tough are probably much like those boxers with a glass chin. I know, and I have no doubt about this - that the people who really are tough are ones who have been through the fight and know just how low the bottom really is. And they had people around them love them and lift them up to keep them afloat. I had this. You can't put a price on it. You can't put it in a bottle and sell it. But you sure you know it when you have it...
Neil
(Disclaimer: advice shared on this
blog or on our related Facebook page can not be a replacement for proper
medical treatment by a trained physician. Speak with a Doctor before
making any medical decisions.)
