I’m going to depart from my normal posting pattern and take the time to discuss something very personal and very disturbing that casts a shadow on my life each and every day.
My better half suffers from a little-known affliction called Churg Strauss Syndrome (CSS). Over the past few years, I have helplessly watched this once vital and energetic man become slowed down, beaten down, and hollowed out by this awful and misunderstood disease.
It’s something I wouldn’t wish on my worst enemy.
CSS is one of about 14 forms of Vasculitis disease. Other related conditions you may have heard of are Wegener’s, Behcet’s, and Kawasaki (what John Travolta’s late son suffered from). It’s an autoimmune disorder that affects the arteries and major organs. The symptoms are many, diverse, and difficult to pin down as actually being a part of CSS.
Hubby started out with what was thought to be a strange combination of rheumatoid arthritis and asthma, the onset of which occurred during middle-age. Other odd symptoms cropped up over time: weird little bumps that would come and go just beneath the surface of the skin, chronic sinusitis, low-grade fever, joint swelling, transient pain, high eosinophil count, frightening nodes that would show up on lung x-rays then quickly disappear. Each symptom would require a new drug, a new specialist, and a longer journey down a darkened road with no end in sight. Finally, in December 2005, he suffered a heart attack.
Shortly after, a very astute physician began to “connect the dots” and four years ago, hubby was given a diagnosis that would change both of our lives; the cause of all of his unusual and seemingly disjointed symptoms had a name. That was the good news of the “good news, bad news” epiphany we experienced. The bad news was, he was already in stage three and there was no cure.
Music has always brought me solace, quieted my fears, eased my pain, and given me escape from a life that is sometimes downright cruel and difficult to deal with. Over the past several years, music, and the friends I have made as a result of my passion and love for it, have made dealing with my best friend’s, my companion’s, my soul-mate’s affliction just a tad easier. It is because of you that I’m not paralyzed with fear as each new day dawns; I can be strong, and in so doing, help my husband stare down a vicious and pernicious enemy. I can’t thank you (and you all know who you are) enough.
These are just some of the songs that have seen me through. For my husband, my friends, and the music, I am eternally grateful.
“Primitive Painters” by Felt via YouTube user mrbriefcasetv2:
“Dark” by Gary Numan via YouTube user PatrickIngham21:
“Soul In Isolation” by the Chameleons via YouTube user LeftHandOfDarkness:
“This Big Hush” by Shriekback via YouTube user 1prosszto1:
“Linoleum” by Tweaker (feat. David Sylvian) via YouTube user tonyreyes:
“Ocean Rain” by Echo and the Bunnymen via YouTube user DrCheese01:
“Violet Light” by Raised By Swans via YouTube user cloudtifa: