Zak Loves Mandy

Photo: Kimberly Kane for VICE.

Photographer and porn performer Kimberly Kane interviews friends and fellow adult film travelers Zak Sabbath and Mandy Morbid in Vice. "Last year, Mandy was diagnosed with Ehlers–Danlos syndrome, a genetic disorder that causes loose joints, damage to blood vessels, and skin that stretches and bruises easily. Her diagnosis was a relief in some ways. For years, doctors had no idea what was causing her debilitating pain, and her health deteriorated until she was often unable to get out of bed, let alone work. Some days are better than others, but if Mandy leaves the house she must do so in a wheelchair or with a cane."

• [Antinous / Moderator]

  Her diagnosis was a relief in some ways.

  Until you’re diagnosed with ED, you get a default diagnosis of “Being Lazy”.

  • [BillGlover]

    I have a friend who was recently diagnosed. She’s always been outrageously “double-jointed” to the point her knees, shoulders and ankles would just slip out of place. Then her tendons started tearing without warning. It’s a harsh, painful condition, and had her doctors guessing for years. Fortunately, she found out before they tried knee or shoulder surgery. ED suffers can’t heal connective tissue very easily if at all after surgery so trying to repair her joints is out of the question. She’s a small business owner in the US, so no insurance of course, which means no treatment and regular arguments and justification to get any pain medication. She’s a single mom with two kids, so even with limited mobility she still has to do what has to be done. Interchangeable parts for humans can’t come fast enough.

  • [Comrade7]

    At first glance I thought you were referring to a different “ED”.  I guess your comment holds for that one too!

    • [Boundegar]

       *snorg*

• [Shannon Larratt]

  I can relate to the “relief” aspect. I spent years in debilitating pain without a diagnosis, being labeled a drug seeker. When they eventually figured out I had a rare genetic disorder that was replacing my muscles with grids of tubular shards of calcium, shredding me internally every time I moved and gradually paralyzing me in the most painful fashion, it was a huge relief to have a diagnosis — even though that diagnosis came with no treatment let alone cure. Objectively it would have been better to be a crazy drug seeker, but I think it’s hard for people who haven’t been through it to relate to how terrible it is to have a debilitating painful illness that no one else even believes is real. After a while you begin questioning it yourself, even though that doesn’t stop you from experiencing the pain and other symptoms.

  Zak Sabbath is great by the way, we interviewed him and covered his art for BME years ago — http://news.bme.com/wp-content/uploads/2008/09/pubring/guest/20060920.html

  • [Ian Wood]

    Hi Shannon! Good to see you here.

  • [Joshua Bardwell]

    I don’t mean in any way to diminish your pain, but “replacing my muscles with grids of tubular shards of calcium” sounds immensely like it ought to be a mutant super power, not a debilitating disease.

• [Mordicai]

  Both of them are fresh voices in the community.  I might not always agree with them, but I sure am happy they are here.  Here’s to love!  Cheers.

• [nixiebunny]

  This is really charming yet practical… “Yeah, and I have Mandy’s preexisting medical conditions tattooed on my right forearm. I think there are around 12 of them.”

• [bolamig]

  I’m still trying to figure out what Xeni meant by “fellow adult film travelers”. 

  • [nixiebunny]

    Let me guess… they’re friends with Kimberly Kane, and they traveled to L.A. to make porn films.

• [dioptase]

  “porn performer … unable to get out of bed, let alone work.”

  Don’t use that description if filing for disability.

  • [ocker3]

     Skin that stretches and bruises easily doesn’t sound like a desired bodily feature in such work

    • [Chentzilla]

      It’s a broad field.

• [Matt Wagner]

  My sister has Type 3 EDS. I completely understand the relief they’ve gone through. If they happen to be reading this, Zak, Mandy, take a really good look at the EDS treatments being offered at the Mayo Clinic in Rochester. My sister started making trips up there about two years ago, and they’ve been dramatically able to improve her quality of life, plus you get connected to a huge community of people with EDS and their families for support, advice, and general bitching. 

  • [Krystle]

    I was diagnosed with EDS in high school, but have been struggling to find effective treatment since. Thanks for mentioning the Mayo Clinic in Rochester – I will have to make a trip!

• [AwesomeRobot]

  After my mother’s struggle to be diagnosed with Lyme Disease (which took nearly 3 years) I can totally understand how someone could feel relief through diagnosis, as sad as it may be. Additionally, it’s completely asinine how you’re treated by everyone (insurance companies especially, but even doctors) until you have some sort of “official” diagnosis. People will legit think you’re a hypochondriac despite being in terrible pain.