Hoping to live long enough to have equal marriage rights
by Cathy Speck
I live in Davis, California with my wife Linda Duval. Though we have no children, we did adopt Mazie the Amazing Monkey-Face Pug/Poodle Terrier Princess. She is an SPCA rescue dog who came into our lives at the right time.
In January 2009, I was diagnosed with Amyotrophic Lateral Sclerosis (ALS) aka Lou Gehrig’s Disease. This is a progressive, fatal neuromuscular disease. Most people with ALS die two to five years after diagnosis. ALS is very rarely genetic, in fact only two percent of the cases are caused by a genetic mutation.
The SOD1 positive chromosome mutation runs in my family and each of my surviving siblings has a 50/50 chance of getting the disease. Our family has already lost my mom, Dorothy, her Aunt Mary, my brothers Paul and Larry, and I’m still hanging on. I have a powerful incentive to live long enough to see the federal government recognize our marriage.
I met Linda in 1993 and we had our first unofficial wedding celebration on June 16, 2001. In February 2004, we were one of thousands of couples who got married in San Francisco City Hall after Gavin Newsom honored our rights to marry.
We had to travel three times to San Fransisco in attempts to get our marriage license because we weren’t allowed to schedule appointments as is done for heterosexuals. With thousands of other couples, we had to line up for blocks in rain, fog, cold and wind for up to 13 hours each trip.
Our determination and steadfast love prevailed. The fourth time we, like other couples, were allowed to schedule appointments and receive our marriage license. We exchanged vows immediately after in the glory of the San Francisco City Hall rotunda. We framed our marriage license from the County of San Francisco, which the courts later nullified.
Again, we did not give up. We were one of the 18,000 gay couples who did get married legally in California before California’s Proposition 8 put an end to gay marriages in the state. Our marriage is still considered valid in California, so we do have the same rights as any married couple in California. However, when we step out of California, or deal with federal laws, we have none of those rights. This means if Linda and I travel out of state, and my ALS requires a trip to the emergency room or a hospital stay, Linda could be denied the right to be with me at a time when I could be breathing my last breath.
When I die, Linda will not get my Social Security benefits. For heterosexual couples all over the country, when a person dies, their partner gets their Social Security benefits. You get a monthly stipend because you’ve been paying into Social Security all your working life. You then draw off that money after you retire and if you die, it goes to your spouse or your dependent. However, since the federal government does not recognize our marriage, Linda won’t get that. All the money I would have gotten to help support us if I were to grow older just goes back to the government. Linda can’t have it.
I contacted attorneys to see if there was anything I could do. They told me that in the eyes of the federal government, I have no spouse. A few friends suggested that I legally adopt Linda, but the only way I could do that was if she were mentally incompetent. I don’t have any children, so when I die my hard-earned money goes back into a government that doesn’t honor our legal California vows. Not only will Linda suffer the loss of her wife, her life companion, she will suffer financially.
Although some people consider Social Security benefits to be of minimal help, in this case it could mean the difference of Linda being able to pay her rent. We are not wealthy and, even though we are known regionally as “rock stars,” most of our years together we lived paycheck to paycheck. We did inherit some money after brother Larry died of ALS, but most of this was spent on pre-paying my cremation, the death certificates, and taking care other legal matters upon my death.
Once again, I emphasize that with the Defense of Marriage Act (DOMA) currently in place, the absence of Social Security benefits will burden Linda during her already stressful and sorrowful grief and mourning. Because her immediate and extended families shun her, they certainly will not be helping her emotionally or financially. As more of my family members die of ALS, Linda’s support system will continue to diminish.
Linda and I had a well-known duo, Duval Speck, a band, The Essentials, and produced three CDs. We performed all over California, sometimes for LGBT rights and celebrations, and other times at “mainstream” public events. We never changed a word in any song, which made us vulnerable to “haters.” For example, if the lyrics were: “ I fell in love with her, and knew she’d be my wife; I would comfort her for all of her life,” we’d never switch “her” to “him.”
In 2009, the first year and a half after I was diagnosed, we directed and played in many benefit concert fundraisers for ALS. Sadly, the ALS has now taken away my ability to sing, my arms and hands hurt and are too weak to play percussion. I have to sleep with special equipment to deliver oxygen now, and my energy continues to decline.
My degree of fatigue determines what I can accomplish each day. Nothing, and if you could see my face right now, you’d know I mean nothing, will dampen my spirit. And I hold onto hope that if I live long enough, maybe the laws will change and the federal government will recognize our marriage. That keeps me getting out of bed in the morning, striving for LGBT equal rights, and continuing to raise funds to find a cause and cure for ALS.
I’m a real-life poster child for why DOMA should be repealed: a 51 year old woman dying from ALS (a disease our society tends to hide) and my wife, 53, with still plenty of life to live. If someone asks what’s unfair about our marriage not being recognized in all states, I can offer several examples, but here is the most glaring one: I’m dying. I have a terminal illness and I pretty much know my lifespan. Linda and I have been together since 1993, and we’re legally married in the state of California, yet the federal government does not recognize our marriage and the rights included therein.
And talk about the old standard marriage vows… “in sickness and health, ’til death do us part,” ask any caregiver of an ALS patient — is there a more cruel and heart-wrenching disease? Linda took big risk when she married me. And before I was diagnosed, she and I were the primary caregivers of my brother Larry, who died of ALS in June 2008, about eight months before I was diagnosed.
Some people in our great country don’t think Linda and I are as good as they are, and don’t think we deserve the same rights. Well, we are as “good as they are,” and we do deserve the same marriage rights.
Go ahead and plaster my story on every wall and every screen. I’m not dead yet. Even the terminally crippling disease of ALS won’t stop me as I strive to open hearts and eyes, so that may all live with love and equality.