My letter to Oprah

Dear Oprah,

I have heard you say many times on your show, “everyone has a story to tell”. I’d like to share with you mine.

I could tell you about the year 1992 when my husband and I lost our King Crab boat in the Bering Sea of Alaska. It was out fishing crab, sank due to bad weather, and all 6 people,were lost at sea. My husband and I supported each other as we worked our way thru the despair.

I could tell you about the years 1996, 1997, and 1998 when I was diagnosed with a rare form of cancer, cancer of the appendix, and fought hard to live despite doing many rounds of chemo that tried to kill me. My husband kept me in fighting shape and took care of our kids, who were 4 and 6 when I was diagnosed.

I could tell you about the year 1997, when in the midst of my cancer fight; my best friend was killed in a freak boating accident. She was 36. My husband kept me literally kept me standing thru the shocking and sudden loss of my Madeleine.

But instead, I’m going to tell you about the year 2005. You see, that was the year my husband was diagnosed with ALS-Lou Gehrig’s disease. ALS is a horrible, rotten, no good disease that will eventually rob my husband of all movement in his body, breathing included. Imagine if you can my husband, my handsome, barrel chested, physical, commercial fishing husband struggling to pick up a toothbrush to brush his teeth, or a hairbrush to brush his hair. This same wonderful person, who 5 years ago was helping to move 700 pound crab pots around the boat deck, now must devise clever ways to get a fork to his mouth because he doesn’t have the muscle strength to lift that fork. So, now, it’s my turn to stand and support my husband and fight hard once again.

I am writing to you in hopes of bringing awareness to this insidious disease. There are approximately 30,000 people living with this disease in the US. Most have a life span of 2-5 years. There is one medication that can help extend life 2-6 months, yes months. ALS is fast and cruel in its progression. A National ALS registry is on the cusp of fruition. This would allow the disease to be tracked, trends spotted, new beneficial drugs to be discovered, and ultimately a cure found. However, the bill has been blocked by one lone US Senator from Oklahoma. Maybe with your national media awareness that could change.

ALS patients are probably some of the most selfless, shining spirits you could meet. They face incredible odds and challenges everyday. Talk about “giving big”! ALS patients “give big” in many ways. Some live in wheelchairs to keep them mobile; some live with ventilators to help them breathe, and some speak with communication devices to keep their voices heard. But it is the spirit of the ALS patient (PALS) that “gives big” back to many many people. The challenges they face, make those of us who care for PALS realize that life is not about the big things, the cars, the money the glamour, but instead living life with love, laughter and compassion. While physically they have “given big”, the soul of the ALS spirit seems to shines bigger and brighter each day they live, breathe walk and talk.

May is National ALS Awareness month. One of our PALS is working to raise awareness in a big way. He is going to ride his wheelchair from Florida to Washington DC! You can check out his “giving big” spirit at http://www.rolloverals.org/ Most days, everything about ALS is hard. Maybe with your help, we could have one day, where things seemed a little easier.
Thank you so much for your time.
Jenny Gore Dwyer