Why? Because it kills. And nobody is standing up for us because we are segregated from each other. Cancer made a very smart move by joining forces. Suddenly the death toll becomes frightening when it's a group of people. Autoimmune affects more people than Cancer, takes away quality of life, sometimes crippling people permanently, removes healthy productive individuals from the work force, and kills, and kills and kills.... either directly from the disease or indirectly from damage caused earlier or drug side effects. Either way it kills more people than anyone can imagine as there are currently no epidemiological studies on AI as a disease group, and certainly many related deaths are misreported and statistically added to other groups. Jim Flaherty's passing was reported as a heart attack, when in fact he was suffering a nasty AI disease and on pretty nasty drugs. Many autoimmune disorders can lead to heart problems due to the inflammatory process going on inside the body. And this is why we are left behind in the dust when it comes to funding, support, and research.
Phil and I went up to Marmot Basin, before it opened up, and he got to see where my happy place is. I remember being 'talked to' on the forum for going skiing with my weakened pred bones, but for me it's more than that. It's a place where my soul can recharge, where my body can suck in as much healthy, clean air and my humanity can get a thrill again of wind against my face. I am with friends, in paradise when I am up there. Once he saw the view, he understood. We had dinner the following night with his parents in tow, and had some philosophical discussions on which we didn't agree, as is to be expected when meeting someone new. We still had fun, and the next day Phil and his parents departed towards home in Saskatchewan. Over the years, Phil and I have had our moments of mutual support, long phone calls, and yes scraps. We fought sometimes like cats and dogs, and Phil had this amazing ability to get me going so bad that I would lose control of myself and do stupid things on-line. That's my own crazy issue.
Phil however was a fighter who only saw comfort in his efforts to help others. Sometimes his comments would misfire, but he was always there, always welcoming and always wanting to have the answer that might be the magic bullet that'll pull you out of the darkness. He wanted to help everyone, and if he couldn't help you with your crazy ass disease, he'd try and help your spirit make sure it gets into Heaven. This was the biggest point of contention between us, but in hindsight I am sure the things that irritated me so, were his way of ensuring his soul gets into Heaven. He did only good, in his mind everything he said or did was directed to good, it's just that eloquence is a skill that many of us don't posses - I'm at the front of that line. I am sure I get many people's hackles up, but I get defensive because my intentions are always good, and I think this was the case with Phil as well.
He helped a lot of people. A lot of people. He is now up in Heaven looking down on us, screaming at the top of his angel lungs to let us know what 'the answer' is - cuz he knows it now - but we are only going to find it if we work hard.
As a final image on this post, I imagine Phil and Jack and Al and Lightwarrior (Christie) up there, chilling around a little table, arms randomly slung over the back of the chairs, leaning back and talking about how it had to take drastic measures for them to finally have a coffee together. They are our guardians now.
You all behave up there ;)
See you on the flipside.
