The price of mixing stem-cell research with right-wing politics

The moment my husband walked in the door, I knew it was bad. Slouching on the couch last spring, I scanned the TV channels halfheartedly. My eyes burned, and my sides ached from the exertion required to choke back emotions. I had called in sick to work, because I couldn’t concentrate–too much worrying over my partner’s doctor’s appointment. As TV ads chattered in the background, I actually wished that my lover had AIDS. More accurately, HIV. I shifted around in my seat, trying to get comfortable, and resisted the urge to throw a pillow at the TV when a picture of Bush II popped up on the screen. That ridiculous photo of Bush parading around in his “mission accomplished” flight suit was being broadcast ad nauseum. Mike and I both had an extreme dislike of Dubya, fueled by our opposition to the Iraq war and by our increasingly futile efforts to protect the environment from the GOP. Little did I know that Mike’s diagnosis would give us even more reason to seethe over this Administration’s policies. As I waited for Mike to return home, the pets–three cats and a dog–hovered close by, drawn to my restlessness. Two cats perched on opposite ends of the couch; the dog was poised on the floor at my side; and a third cat balanced on a chair opposite the rest of us. The air in the small den was dense with warm bodies–all of us crowded into one tiny space, waiting. Our pets appeared to have called a truce in a show of unity during this unusual break from the daily routine.

Mike had finally agreed to visit the doctor after he couldn’t shake the slurred speech that had been nagging him for months. We first noticed the slurred speech over shared wine at Christmas. Mike’s speech was unnaturally slurred after a single glass. At the time, we had been experimenting with veganism and had eliminated meat and dairy from our diets. “I guess you can’t remove meat from a native Texan’s diet and expect him to hold his liquor,” Mike joked. Texans are made of tough stuff–there’s a long history of gun slinging, independence, and rugged living in a Texan’s genes that just can’t be fueled with granola and tofu. We agreed that vegans make poor Texas outlaws and added meat back into our diet. We made love that night and quickly forgot the incident.

In February, however, the slurred speech appeared on its own, without the help of alcohol. Mike’s fine motor skills were also affected. He had trouble dicing onions when we prepared meals together; he had difficulty buttoning his shirts. Mike tired easily and would drop into bed, exhausted, by 10 p.m. This time, we decided that Mike’s long hours at work were taking their toll. He vowed to reduce his overtime–a scary proposition for a software engineer in a shaky economy, despite the “upturn” touted by the Bush administration.

In April, despite a lighter workload, more rest and a healthy diet that eliminated alcohol and included animal products, Michael was still experiencing problems. He scheduled an appointment with his physician.

We were nervous. If you Google “slurred speech,” aka “dysarthria,” you’ll find that it is a symptom of any number of awful diseases. Brain tumors, multiple sclerosis, Alzheimer’s, AIDS. Basically, your outlook is just not good if you are experiencing this symptom. I tried to focus on the positive, selecting the least lethal disease on the list. The good thing about HIV/AIDs, I thought, is that it’s no longer an automatic death sentence in the United States. Look at Magic Johnson–he’s lived for over a decade with an HIV-positive diagnosis.

The worst disease on the list was ALS (Lou Gehrig’s Disease). ALS is a neuromuscular disease that affects the neurons in the brain and spinal cord, eventually paralyzing the entire body while leaving the mind unaffected. ALS sufferers lose the ability to use their arms and hands, to walk, to eat and speak, and eventually to breathe. ALS patients literally become prisoners of their own bodies. Although experts believe that stem cell research could show promise in stopping the disease, ALS is currently incurable and terminal. Most patients die within two to five years of diagnosis.

The moment my husband walked in the door that May day, I knew it was bad. He greeted me with a weak smile, his laugh lines drawn tight. Mike greeted our pets one by one, averting his eyes from my full examination. He had his medical files in hand and quickly excused himself, retreating to his office. “I’ll be back in a second,” he whispered.

Mike returned shortly and took a seat next to me on the couch. I wanted to bolt, and put distance between myself and the news I knew I was about to hear. Wrapping his arms around me, Michael pressed his cheek against my forehead and swallowed hard. “It’s ALS.”

Horror, disbelief, grief and panic thundered down upon us that day in the living room, and our lives have never been the same. Shock is an inadequate word to describe the feeling that assaults you when you realize that your most treasured friend is going to die and you are helpless to stop it. Helplessness, however, is not our strong point.

Committed to fight, Mike and I strive to learn everything that we can about this disease. We research the limited options. We look for treatments. We scan headlines for news about developments in ALS research. We nod our heads and thank the friends who tell us about alternative therapies. We appreciate the support of caring neighbors.

We also rage. We fume against an administration that has betrayed people on so many levels–economically, socially, politically and environmentally. An administration that refuses to consider the science behind stem cell research and the promise that it offers to victims of so many horrible diseases. We feel eerily connected to veterans of Gulf War I, who are diagnosed with ALS at a rate two to three times the rate of the general population. Finally, we strive to enlighten people on the many reasons that they should take a long, hard look at whom they’ll be voting for in the upcoming November election.

In the end, fighting an insidious disease and an Administration that ignores it is not quite as glamorous as going down in a hail of bullets on the Texas plains. Our fight is a worthy struggle, though, and just as noble. And partner, I’ve got your back.