About Cathy Speck!

One of five in her family impacted by ALS, otherwise known as Lou Gehrig’s Disease; Cathy was diagnosed only months after losing her brother to ALS. Having lost her mother to ALS at the age of 13, Cathy is well educated about the disease and has spent a lifetime coping with its devastating impact. While caretaking for her brother she began to recognize symptoms that he was experiencing in herself. Knowing that her family could not cope with losing her too, she kept her suspicions to herself.

Once diagnosed, Cathy became the biggest advocate ALS has ever seen! From teaching junior high school students to educating her co-workers at the Davis Food Co-op, Cathy shares her story with all who will listen. Honestly, it’s not hard to listen either. Her spirit is kind. Her voice is soft. And her words eloquently deliver the powerful story of the disease that is so devastatingly killing her motor neurons and will ultimately lead to her passing.

Cathy knows that her days with us are limited and her biggest concern is for her wife Linda, who she is struggling with leaving behind. Federal laws don’t recognize their union, so Linda will not be able to receive her social security checks. They live in a one-bedroom apartment, have been living paycheck-to-paycheck most of their relationship (more than 16 years), and Linda has no family to support her. Cathy is also very worried about her other siblings, each of whom have a 50% chance of inheriting the gene mutation that leads to ALS.

Cathy insists that future generations of children should not have to endure the ravaging effects of ALS. Her courage and strength is unprecedented as she loses mobility with each passing day. Together with Linda, Cathy is often times found performing (music and singing are her passion). Whether it’s at a local Farmers Market or a holiday party for other patients facing this disease, she uses this medium to share her words of encouragement for others and shed light on the issue of ALS.

Her story is shared with local media often, and while it’s not the limelight she craved, she is making huge strides in the Davis community and beyond by creating awareness about the issue of ALS. As she bares all to local media it’s hard not to be captivated by the woman she is, as she so boldly explains her day to day struggles from her loss of energy to the most painful subject of all–losing her ability to sing.

Her selflessness never ceases to amaze as she talks about the world free of ALS, the world where children do not have to worry because there is a cure. I nominate Cathy Speck as my hero because her passion is transcending a community and creating awareness. All with the hope of mobilizing change and finding a cure for ALS.

And a letter from Cathy:

July 2009

Cathy on stage

My family, Gene and Dorothy Speck and my zillion siblings, moved to Davis, California in 1956. The Specks have many fine traditions in Davis. And although I am honored to be following in the footsteps of my brother Larry and my mom Dorothy, those steps are rapidly becoming aided by a walker and wheelchair.

I have ALS, amyotrophic lateral sclerosis, aka Lou Gehrig’s disease. We have a rare genetic form of familial ALS running through my family. Of course, all of my family, friends and co-workers are being tremendously supportive and compassionate. I feel so fortunate to be living in the community of Davis where love and offers of help so freely abound.

My biggest concern is for my wife, Linda Duval. We were married last November 2009, the day before the election when Prop. 8 passed. (Our state does establish trends for the other 49, so I’d been hoping that we could make progress out here on the “Left Coast.”)

Linda and I have been a committed couple since 1993. We live together, love and laugh together, cry together, and make lots of music for our community – always together. Because of the lack of equal marriage rights, Linda will not be able to receive my Social Security benefits when I die. This is just one of the sad realities of what happens when our country doesn’t treat its citizens equally.

Someday I hope the United States of America and the great state of California will recognize that our love and commitment are as strong as any heterosexual couple, and that we deserve the same rights and benefits. We pay the same taxes, and we die and leave our loved ones behind. Although I am the eternal optimist, I don’t think marriage equality will happen before I die.

But when equality is manifested, you all will hear my booming voice bouncing off clouds and dancing with the rays of sun. And I will be singing of thanks and praise. And Love. Always remember Love – with a capital “L.”

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