Arthrogryposis and me, journey of a Twisted Sister.

When I was born with Arthrogryposis Multiplex Congenita 63 years ago the doctors gave my parents the following advice after shielding my mother from me after my birth:

“Your daughter will never be independent, she will be a heavy burden to you for the rest of your lives. Don’t feed her and let Nature take its course.”

Thanks to my parents, especially my mom who already had 3 children (and another one after me), this photo journey through an unfinished life was possible.

I was casted at 6 days old.

Walked with metal leg braces at age 3.

Had 9 orthopedic surgeries by age 11 and spent many years in leg, arm and body casts as a child.

Proud owner of bilateral clubbed hands and feet.

Have no hand strength or use of fingers for grabbing other than with leverage.

Was bullied incessantly in schools.

My first concert was Monterey Pop Festival in the Summer of Love ~ the roots of my music addiction.

Traveled throughout Europe with my mom and little brother.

Attended 13 schools in five countries by age 17.

Married at 18.

Worked as a switchboard operator and later as a front desk clerk for Hilton Hotels.

1981 at age 26 gave birth to my beautiful daughter.

1983 got my first Electric Mobility scooter when my daughter learned she could outrun me.

1983 started a support group for mothers with disabilities.

Served on the Board of Easter Seals Society for 5 years.

Served several years as a volunteer pregnancy counselor for Planned Parenthood.

Served several years as an advocate for abused women through the YMCA.

When I could not get hired at a wage I knew I was worth I studied for and earned my real estate license in 1990 while recuperating from hip replacement surgery.

Earned Top in Sales and Production in Monterey County for Century 21 Real Estate in my first year in sales.

Moved to Lincoln in 2000 after my legs could no longer handle my career choice.

2005 started following local music and musicians to fill the void of moving away from the central coast and my career.

Started a Music Posse to support and promote local music and musicians,

Became a freelance writer for Lincoln News Messenger writing a weekly music column about the backstories of local musicians, and human interest stories.

After several bad falls I had back surgery in 2006 for a synovial cyst on my spinal cord.

Lost 120 lbs on my own after getting off Oxycontin after taking it since it was prescribed for me in the late “90’s as a ‘new miracle drug’ for my chronic pain.

2011 attended my 1st AMC Conference in St. Louis, Missouri where I met 700 fellow twisted brothers and sisters from other mothers.

Started my own raised bed veggie garden.

Walked my daughter down the aisle at her wedding in 2012.

Welcomed the first of my two precious grandchildren in 2012.

Gratefully babysat my 11 month old granddaughter full time for 11 months, till my back gave out.

Managed my late 91 year old mother’s affairs for many years after she declined in mobility and cognition, and took her along to listen to our favorite live music shows.

Met the love of my life Rick in 2014 when I took my mother to a Valentine’s music showcase at Luna’s Cafe in Sacramento where he was playing lead guitar for a local trio.

2015 bought my accessible Magic Bus.

2015 encouraged Rick to explore gender reassignment/surgeries after hearing her life story of being born into a body that did not match her brain (it was a no brainer for me since I always felt the same way about my body).

2015 went full time to my power wheelchair after developing 20 benign inoperable bone cysts in each foot from years of wearing leg braces and AFO’S, so I could walk on my legs that have never had any movement below the knees and no Achilles tendons.

2017 Blew out my right shoulder after using it for leverage to compensate for no manual dexterity (severed 3 rotator cuff tendons) had surgery to reattach them, but I tore them again since I did not have the hand/arm strength to properly rehabilitate the shoulder post surgery.

Sat beside my mom’s bed while she was in hospice care at home and invited some of the musicians she loved to sing at her bedside.

Supported my partner and fellow music junkie Sara Lee Scovil through 2 gender confirmation surgeries.

Spent many months in bed from a pressure that started after dancing in my wheelchair for 12 hours at Rockfest in Rocklin, hosted by Lynn Reeves (yes it WAS worth it!).

Spent several more months in bed after back/disc problems took over my mobility.

Returned to dancing after recovering and getting my first Roho air cushion for my power wheelchair.

2018 home schooled my 6 year old granddaughter 4 days a week for a year (recently had to quit due to increases in chronic pain).

I believe the doctors were WRONG!!

Yes, I have suffered from chronic pain and depression for most of my life and struggled with suicidal thoughts since I was 16. I am here today because in between the pain and suffering lived a Joie de Vivre that was stronger than the pain.

Thanks to love, family, a few good friends, and a few very tough relationships, Nature and music for teaching me more about myself and the world, and being my anchor on this stormy planet.

I hope to continue to dance to the music of life.

(Forgive any duplicate pics, my brain wants a break! 

(Forgive any duplicate pics, my brain wants a break! 


Link to photos:

About Mystery Companion

Trying to keep it real in an increasingly unreal world.
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