Not Dead Yet

Last time I saw my neurologist, he suggested I try Tysabri. I have been using Avonex for about 10 years. Both are "disease-modifying drugs" for MS.

I chose Avonex because it is a once-per-week injection. The day after my injection, I always have flu-like symptoms: I feel tired and weak, like I'm under water. There are other medications that require more frequent injections. Doing the shot more frequently (and perhaps feeling crummy more frequently) has never had a strong appeal for me, even though some doctors think Avonex is not the most effective drug.

All the disease modifying drugs have the promise of delaying the disabling effects of MS. This has always seemed to me way too easy for the pharmaceutical companies: "Take this drug. If you don't feel any different, it's doing its job." The drugs were invented after I was already living with significant disability, but as the doctor who first precribed Avonex said, "Things could always get worse."

Tysabri is slightly different. The glossy packet of information my doctor gave me does show in colorful graphs, how it is longer before those who take it will use a wheelchair. Too late for me. The once a month infusion (administered at an infusion center) had some attraction. The info packet also included information about PML. Progressive multifocal leukoencephalopathy is a rare and usually fatal disease, incidence of which is increased by taking Tysabri. Six patients receiving the drug have contracted PML; four deaths have been linked to Tysabri. My doctor suggested it would be an appropriate medication because my MS is progressing.

Every time I worked the equation in my mind, the fact that "could kill me" was on the Tysabri side made the medication switch seem like a bad idea. It seemed that the doctor was suggesting that it would be better for me to risk death than to become more disabled. That made me remember the disability activist group called Not Dead Yet, formed to combat the spread of legalized assisted suicide.

When I think about suicide (and that is fairly frequent), I realize that I don't really want to kill myself. I want to kill a difficult situation. I want to kill the limitations that my care places on my family. I want to kill the lack of care I get from the medical system. A recent editorial in the New York Times pointed out that chronically ill Americans suffer far worse care than their counterparts in seven other industrial nations. For me, the antidote to suicidal thoughts is often to think, "If [name some level of care I am not receiving] were in place, would I still want to die?" Then I realize how much I want to live.

For instance, if I had someone who could help me to the bathroom in the middle of the day and someone who could take over my care so that Ralph and Alexis could travel, I would feel so much less a burden on them that I would stop wondering if there is a bridge over which I could drive my wheelchair.

Samuel Johnson wrote, "when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully." My neurologist's suggestion that I risk death by taking a new medication has invited me to a new appreciation of life.