Living with chronic Lyme Disease and EDS
At the end of 2012 young mother Saar came to my studio for a family portrait. She wasn’t able to walk long distances and rather wanted to sit than stand up when posing. In 2013 she was diagnosed with Neuro Borreliose Lyme phase 3, next to EDS -Ehlers Danlos Syndrome- in 2011. She will never walk again.
Saar is the kind of person that never gives up, and being chronicly ill, she wants to inspire and empower others to still love life. Her mother instinct turns her into a lioness fighting for her kids. She’d rather die than see one of her kids get hurt.
Stichting Puur Zien Seeing Pure, our foundation, supports her with PhotoTherapy. In 2007 Saar posed for me for the first time. She is one of 80 proud teenmothers posing for PUUR. Trotse tienermoeders Portraits of powerful young mothers, pregnant or with child. Zero Photoshop is used for these nude portraits.
She keeps posing for me, but after becoming ill she’s no longer the joyful, energetic mother I once knew. She even travels to Germany. Her last hope to get the right diagnose, as in the Netherlands the Lyme tests don’t search for the spirochaetes (bacteria) thoroughly enough.
In 2013 I visit her in a private clinic in Germany, witnessing her battle with Lyme. I do not only portray her happy moments, but also her deepest pain. “My head is going to explode, it’s hurting so much” she screams when the antibiotics reach the bacterias in her brain fluids.
When Saar is staring at the ceiling in the middle of the night I advise her to take a photo of the hideous ceiling she 'cannot escape looking at'. By photographing herself, her bed, her room Saar finally makes peace with the fact she will never get well again.
EDS can't be cured and now Lyme seems to have won too. The treatment is too hard for Saar though, forcing her to stop with the antibiotics, as she’s getting brain seizures. Now’s she’s back home, only to see the husband leave her.
‘I remember photographing myself for the first time while wearing a neck brace so well.’
Saar takes photos of her fighting the diseases, but also shares her happy moments, check out her Facebookpage. Saar shares her life, love and pain with her many followers and fans. To draw attention to the devil Lyme Disease really is.
With a happy smile floating on the water during a short holiday close to home in a special needs holiday home… Her man divorced her, her body is though but broken. Her two beautiful children give her the energy and the will to stay alive.
She needs a jejunostomy & PEG tube to survive as she can’t eat or swallow anymore. She needs physical therapy but will never walk again. Recently she her daughter was also diagnosed with EDS, how much more out of luck can a mother be?
Help us help Saar
Our foundation Stichting Puur Zien helps Saar using photography as tool. By seeing and showing herself Saar now accepts her chronic illness. You can support our work via Paypal or by bank NL21INGB0006544911 to: St. Puur Zien, Breda the Netherlands. BIC: INGBNL2A.
More posts on young mother Saar: search for 'Saar' on my Blogspot page.