Love in the time of dystonia


Layla Love with David Wolfe

As a journalist, I’ve worked with many photographers. Their cameras are their third eyes, capturing the souls of people and places. One came to dinner last Thanks Giving.

Enigmatic feminist photographer, Layla Love, arrived when we were well into the frivolity of wine, turkey and other vegetables.

It was an “oopsy daisy” night because I plonked a gobbler on a table full of vegetarians. ‘Hang it’, I thought, and had one “frivol” too many. So Layla enters to witness me acting the strife and fool of the party – insisting the turkey was made of tofu.

Surprisingly, she overlooked my immoderations and granted me an interview during her busy schedule of preparing for New York exhibitions and having a dress made for the Oscars.

I hear you – “Wow, Jeanette interviewed someone who went to the Oscars! I really should call and invite her to all of my fabulous parties!” (Come on, whatcha waiting for?) Yes, I  get to meet some of the world’s most fascinating people in my job, but there’s always a challenge in hearing their stories.

I’ll have a side of L-dopa with my ice-cream and sprinkles

4294886_sLike so many artists, Layla can peg out a substantial zone in the hard life property boundary. At age five she developed a crippling neurological disease; dopa-responsive dystonia (similar to Parkinson’s disease). It began in her legs, and eventually spread throughout her body creating involuntary muscle contractions, hence uncontrolled movements and tremors. Doctors puzzled over the diagnosis while her mother tried to help her symptoms with natural medicines, .

Finally, at age 11, the condition was identified and she was given Parkinson’s medication. Within hours Layla began to gain control of her motor skills.

“That was an amazing start for me but such strong medication takes its toll on a child. The side affects escalated as I got older and eventually I developed multifocal choroiditis, an irreversible scarring of the retina. I have experienced significant vision loss,” says Layla.

Feeling “Crook”

6753095_s[1]Many think that we’re at the mercy of our genetics, the environment, or the bad behavior of others.

New science shows us that we may have propensities and weaknesses, however we don’t have to manifest disease. A stressor upsets the balance of the physiology. For Layla it was the instability of a sick mother, a Bohemian childhood, and a predisposition.

“My mother carries the same neurological weakness, low biopterin levels, and has had MS since I was a child, which she has managed well with natural therapies.  Mom moved my sisters and I constantly, which caused a disproportionate amount of stress from an early age.  I didn’t understand why she was sad, unwell, or unable to give us a stable home. Some of us are innately more sensitive, ” says Layla.

Getting sick is never nice but it does provide an opportunity for change, that is to re-frame those elements of the self that have precipitated the problem. If you’re just feeling a bit “off”, or you’re really “crook” ( Aussie for, “got a shocking illness”), check in with yourself and the original trigger/stressor might just appear.

This bit’ll make you cry

LaylaLayla’s had two long-term, steady companions; high stress levels, and a camera. From age seven she witnessed life through a lens from her wheel chair. She’s had to deal with pharmaceutical side effects, hospitals, the pressure of living as an artist,  doing shows, New York life, times of penury, and even shocking brutality.

As a human rights activist and photojournalist, Layla traveled Southeast Asia, West Africa and Eastern Europe capturing on celluloid, moments in the worlds of the harshly challenged. (She only uses film – loves the darkroom.)

“Gaining a sense of perspective has been healing. Holding a terminally ill kid in an orphanage made me more determined to become physically strong so I could continue to be of service. Seeing others who have it worse than you, removes the “why me” feeling that comes with sickness. It always comes back to the self, having autonomy. ”

Her harshest challenge came while visiting Sydney, Australia, where she was brutalized by a gang of rapists in Hyde Park. After returning to consciousness, a bloodied mess, she photographed herself.

“The camera gave me a way to take control, not be a victim. I could expose what happened from a place of strength. Taking raw emotion and transforming it into something else helps.  The traumas inhabiting the pages don’t have power over me anymore.”

Women’s business

Inhumane treatment of women is a global epidemic. Prior to her own attack, Layla collaborated with the likes of Gloria  Steinem, Ani DiFranco, Tori Amos and Alice Walker.

Layla and Gloria Steinem

Layla and Gloria Steinem

“At least four million women are involved in the sex slave trade, that’s why I’ve collaborated with people in the women’s movement . Being on that path before the attack gave me a lot of tools to reference.”

Layla’s photographic art reflects her struggles and triumphs. It’s sometimes raw and harsh – a gun at the head of a small child flashes to mind. At the other end of the scale sits whimsy. One striking image, inspired by her experienced of Egypt, has butterflies covering the eyes of a woman. The piece, called Soul Mates, reflects on transformation and a deep spiritual awakening. Through her own unique journey she hopes to emerge as an able bodied butterfly.

“We enter the world with challenges. The beauty is in how we can transcend and transform and become well connected with the earth and each other.  It’s time to stop fighting and just create solutions. Between nature and self-love there is a solution for everything.”

Where’ve you bean?

26039115_sFor  two years Layla’s been taking a herb called Mucuna pruriens, from a tropical legume called Velvet Bean. It’s used in traditional Ayurvedic medicine. The high concentration of L-Dopa in the seeds is useful for several conditions including Parkinson’s disease. Nature is marvelous, isn’t it?

It’s reduced Layla’s side effects by 70 percent and improved her functioning and sight significantly. However she is determined to have a more profound healing experience.

“There’s the danger that the multifocal choroiditis could cause complete blindness. My goal is to naturally produce dopamine and restore my vision. I want to go horseback riding and do ninja moves. I never rode a bike in my life.”

Layla will spend a year focused on achieving optimal health using natural medicines and through bringing mind, body and soul into resonance. She’ll film every gritty moment of her metamorphosis. The plan is to engage the medical community in a control study to determine whether lifestyle and herbal approaches are a better solution for this condition than pharmaceutical drugs. A kickstarter campaign is available to support the project.

You can view Layla’s images at or in the White House Collection, or Tiffany & CO outlets around the world.


  1. Hey J,
    You are on fire. Wonderful piece on Layla. Inspiring life and the power of the spirit and natural healing.
    Go well

    Comment by Brian James — June 8, 2014 @ 8:53 am

  2. Jeanette,

    One of your best captured spirits in print… a heartfelt story! The amazing, inspirational, driven artistic spirit of Layla is captured in your article. The link to her photographs is amazing, it left me in awe of the artistic eye a great photographer has.

    Comment by Ken Bernard — June 9, 2014 @ 4:20 am

  3. Hi Jeanette,
    Excellent article and so inspirational! Thank you for sharing her story in such a brilliant manner. Great to know that the power of nature can still be so strong in healing powers.
    Malia Crain

    Comment by Malia Crain — August 6, 2014 @ 7:45 pm

RSS feed for comments on this post. TrackBack URL

Leave a comment

About the Author

  • Journalist – The Age newspaper, Herald Sun newspaper, various magazines
  • Author – 5 books
  • Screenwriter - stay tuned!
  • Entrepreneur – Health forums
  • Slightly nutty – This is good because nuts are good for you
  • Long-term consumer - Natural health services
  • Advocate - For choice in health services
  • Mother – Wonderful grown daughter
Find out more about me and my work
<!--[if gte mso 9]>< ![endif] >< ! [if gte mso 9]>Normal0falsefalsefalseEN-AUX-NONEX-NONE< ![endif] >< ! [if gte mso 9]>< ![endif] >< ! /* Font Definitions */ @font-face {font-family:Wingdings; panose-1:5 0 0 0 0 0 0 0 0 0; mso-font-charset:2; mso-generic-font-family:auto; mso-font-pitch:variable; mso-font-signature:0 268435456 0 0 -2147483648 0;} @font-face {font-family:"Cambria Math"; panose-1:2 4 5 3 5 4 6 3 2 4; mso-font-charset:0; mso-generic-font-family:roman; mso-font-pitch:variable; mso-font-signature:-1610611985 1107304683 0 0 415 0;} @font-face {font-family:Calibri; panose-1:2 15 5 2 2 2 4 3 2 4; mso-font-charset:0; mso-generic-font-family:swiss; mso-font-pitch:variable; mso-font-signature:-520092929 1073786111 9 0 415 0;} /* Style Definitions */ p.MsoNormal, li.MsoNormal, div.MsoNormal {mso-style-unhide:no; mso-style-qformat:yes; mso-style-parent:""; margin:0cm; margin-bottom:.0001pt; mso-pagination:widow-orphan; mso-layout-grid-align:none; punctuation-wrap:simple; text-autospace:none; font-size:10.0pt; font-family:"Times New Roman","serif"; mso-fareast-font-family:"Times New Roman"; mso-ansi-language:EN-US;} .MsoChpDefault {mso-style-type:export-only; mso-default-props:yes; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:Calibri; mso-fareast-theme-font:minor-latin; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi; mso-ansi-language:EN-US; mso-fareast-language:EN-US;} .MsoPapDefault {mso-style-type:export-only; margin-bottom:10.0pt; line-height:115%;} @page Section1 {size:612.0pt 792.0pt; margin:72.0pt 72.0pt 72.0pt 72.0pt; mso-header-margin:36.0pt; mso-footer-margin:36.0pt; mso-paper-source:0;} div.Section1 {page:Section1;} /* List Definitions */ @list l0 {mso-list-id:516119202; mso-list-type:hybrid; mso-list-template-ids:947439512 1096844822 67698691 67698693 67698689 67698691 67698693 67698689 67698691 67698693;} @list l0:level1 {mso-level-start-at:0; mso-level-number-format:bullet; mso-level-text:-; mso-level-tab-stop:none; mso-level-number-position:left; text-indent:-18.0pt; font-family:"Calibri","sans-serif"; mso-fareast-font-family:"Times New Roman"; mso-bidi-font-family:"Times New Roman";} @list l0:level2 {mso-level-number-format:bullet; mso-level-text:o; mso-level-tab-stop:none; mso-level-number-position:left; text-indent:-18.0pt; font-family:"Courier New";} ol {margin-bottom:0cm;} ul {margin-bottom:0cm;} >< ! [if gte mso 10]>< ! /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-qformat:yes; mso-style-parent:""; mso-padding-alt:0cm 5.4pt 0cm 5.4pt; mso-para-margin-top:0cm; mso-para-margin-right:0cm; mso-para-margin-bottom:10.0pt; mso-para-margin-left:0cm; line-height:115%; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi; mso-ansi-language:EN-US; mso-fareast-language:EN-US;} > < ! [endif] >


< ! [if !supportLists] >- < ! [endif] >Journalist – The Age newspaper, Herald Sun newspaper, various magazines

< ! [if !supportLists] >- < ! [endif] >Author –

< ! [if !supportLists] >o < ! [endif] >The Natural Health Directory, A Discerning Guide to Leading Medical and Non Medical Practitioners in Victoria, (Hill of Content Publishing, 2001)

< ! [if !supportLists] >o < ! [endif] >DVT deep vein thrombosis, The condition you don’t have to have, Co author Monica Jane Shalit (Pennon Publishing, 2002)

< ! [if !supportLists] >o < ! [endif] >Biography, Maxine Fensom, Maxine Stripped Naked, Tales from the sex industry (Pennon Publishing, 2004)

< ! [if !supportLists] >o < ! [endif] >Managing Aches and Pains (B Jain Publishing, 2010)

< ! [if !supportLists] >o < ! [endif] >Defeat Sleepless Nights (B Jain Publishing, 2010)

< ! [if !supportLists] >- < ! [endif] >Entrepreneur – Health forums

< ! [if !supportLists] >- < ! [endif] >Slightly nutty – This is good because nuts are good for you

< ! [if !supportLists] >- < ! [endif] >Long-term consumer of natural health services

< ! [if !supportLists] >- < ! [endif] >Advocate for the pursuit of good health

< ! [if !supportLists] >- < ! [endif] >Mother – Wonderful 23 year old daughter

More about me and my work