We Don't Need Another Hero

 

This is a post I’ve wanted to write for years, but haven’t had the courage to share, because I’m afraid it will be misconstrued.  Ever since Von Hippel Lindau (VHL) was diagnosed in my family back in 1985, people have been trying to “save” us.  By “save,” I mean that people have come out of the woodwork to heal us of a genetic disorder via various means.  I am not referring to people who offer help – like providing meals, or rides, or fundraisers, or valuable friendship and support.  We’ve had that over the years and it is a blessing.  It is difficult for me personally to accept, but it is truly amazing!  No, I’m talking about people who seem to be determined to cure us.  With my family, early on, it was often people we barely knew.  There have been Gypsies, Empaths, New Age Healers (not the band), Shamanism, Macrobiotics, as well as friends who have offered advice (never asked for) about how to beat this disorder.  My family as a group, and me personally, have always tried these things out.  We’ve drastically changed diets several times, tried acupuncture, acupressure, various therapies, lifestyles, etc.  None of these things have stopped the growth of tumors.  Most of these people have come and gone over the 35+ years it’s been going on.  Again, I’ve taken all of this very seriously and have tried different things to stop this garbage from growing in me and, on some level, appreciate the effort, though I worry that it has had a very negative effect on me over the years.

 

One consistency with these “healers” is that nearly universally, they try to get us to reject modern medicine and science – that the disorder can be controlled and dealt with the right attitude and their guidance.  I have always found this strange, because I have yet to encounter a medical doctor who has dismissed alternative treatments.  It is concerning.  The negativity comes from the constant failure of these treatments.  If the “healer” hasn’t already vanished, I am instructed that I didn’t do the treatment right, or that I didn’t commit enough.  The net result is that I feel like a failure, because this treatment worked on their second cousin’s sixth grade teacher’s Aunt, or something.  It’s confusing and discouraging.  I’ve failed at everything from full lifestyle changes to trying to wish away my tumors.  Maybe it is my lack of commitment.  I cannot write off medical science and keep from getting my annual scans to check on tumor growth. 

Don’t get me wrong, for the most part, I think these people have had the best of intentions and I truly appreciate that, which is why I have always tried.  However, I am tired of feeling like failure.  I’m tired of the lack of understanding.  I often get the feeling that these “healers” believe that I want to be riddled with tumors.  I can assure you, that’s not the case!  I have been willing to try a lot of different things over the years to try to avoid surgeries and specialists and constant various exams.  It is like having full time job, where instead of being paid periodically, you pay your boss.  

I think of that idea, where someone may complain about their problems, not to have the recipient of these complaints fix the problems, but just to listen and understand.  This is similar, except, most of the time, I do not complain about my health issues (or try not to), but I’m often getting strange solutions from people that completely ignore the fact that I have nearly forty years of experience and knowledge.  What it tells me is that the desire to help is more about them than it is me.  It is refreshing when people offer to pray for me, or to send good vibes, or try to understand my medical experiences, before jumping into shaming modern medicine and trying to convince me that I have been foolish all these years by not trying their latest favorite healing method.  Modern medicine and I have had a rocky relationship over these many years, yet it has been the only consistency in helping me deal with this shit.

Please take this into consideration, if you find someone close to you stricken with health issues.  Your love and support are much more helpful than a million self help books.  I may a selfish whiny asshole, but, as a longtime member of the chronic medical issues club, I do not think I’m alone in this.