Introduced to TASshazzz early in 2000, she was among the first to say “yes” to joining our chat host team. A young woman with classic narcolepsy including severe cataplexy, she had been forced into a sort of early retirement from her position as a CPA. A wife and mother of two young boys would have been enough to keep anyone's life busy, with or without a sleep disorder. She told me she felt a responsibility and desire to help support other patients with narcolepsy; there was so little information available on the internet at that time. I was so impressed with her attitude and sense of commitment; she was a perfect fit for our talk about sleep support programs. She has been a leader within our chat host team and tireless advocate for her fellow narcolepsy patients. In addition to hosting an evening narcolepsy chat every week since July of 2000, she also wrote an impressive article for our website describing the sleep disorder patient process of applying for disability benefits. Generous of her time, she is now serving her third term as President of the national non-profit narcolepsy patient association Narcolepsy Network. I am honored to call her my friend. - Tracy Nasca, Vice President, Talk About Sleep
We asked TASshazzz to provide her story:
It's 1989. I've just been diagnosed with a disorder called narcolepsy. It's a chronic disorder, I'm told, but there are treatments. I leave the doctor's office in a bubble, relieved that it isn't something really serious, expecting that a few pills a day will put me back on course. There is no Internet, and the public library has only one book that briefly mentions narcolepsy. Slowly but inevitably, the experience of living with narcolepsy over the coming months and years will fill the information void with a harsh lesson: Narcolepsy is a very serious disorder. It will affect every aspect of my life and force changes I would never have imagined. At times, the sense of loss will be overwhelming but my survivalist instinct will be strong enough to lead me to a newfound purpose in life.
Learning to live with narcolepsy, or in spite of narcolepsy, has been a formidable challenge requiring many changes and adjustments along the way. I lost my career to narcolepsy and along with it my sense of identity. I found that I could no longer read a newspaper article, no less a book, watch TV, do a crossword puzzle or the needlework that I otherwise had time for; they had all become triggers of sleepiness. I was ill-equipped to be full-time Mom to my 2 yr. old son. I struggled through each and every day without the nap I desperately needed because he had given up naps and his exploring nature required constant supervision. The combination of daytime sleepiness and severe cataplexy that medications did not relieve made it unsafe for me to drive outside my town or stay out for long. My husband didn't have an inkling of how limited I had become or how much I suffered emo tionally for the lack of naps and resented having to take over the minute he walked in from work.
Early on I had joined the American Narcolepsy Association and devoured the information they sent me on narcolepsy. I attended a one-day conference where I first met others with narcolepsy. I also attended monthly support group meetings for about a year. Most of the members were a good deal older than I and/or at different stages of life. Still, the understanding, acceptance and sharing of our common experiences empowered me to be more proactive in seeking solutions rather than enduring the hardships I faced.
Learning to live with narcolepsy is a continual process. Whether by choice or circumstance, our lives change and evolve over time as surely as the world around us changes, and we are challenged to adapt to these changes as best we can. I came to appreciate the value of my life experiences with narcolepsy when one or another narcolepsy acquaintance would refer a newly diagnosed individual to me. More often than not, I was able to draw on my knowledge, experience or general resourcefulness to discuss solutions to the issues they raised.
Along the way I had ceased taking medications, confirming my suspicions that they had barely made a difference in my symptoms. In 1994, I decided to give Effexor a try. Within months I was virtually cataplexy-free. While my level of alertness still diminished the longer I was awake, I was able to cut down to one 90-minute nap per day. This was a welcome improvement, allowing me to help my son with his homework in the afternoons. It would be my son, even more a lover of learning than I, who compelled me to sign up for the Internet in 1999. Along came an issue of Narcolepsy Network's newsletter, The Network , giving the web address for an online narcolepsy support group. I joined eager to communicate with other people with narcolepsy. For the first time, support was at my fingertips, available 24/7. More than anything I appreciated the high quality of information posted to this group, where one could learn about old and new research as well as clinical drug trials in progress and the experience of those participating in those trials. It was a huge learning experience for me, one that sparked my passion for learning everything I could about narcolepsy. I believe those of us who share this desire derive a sense of control as we leave less and less to the physicians who treat us. I learned of several research projects and immediately volunteered. It struck me that many of the members of this group did not seem as well-treated as I, particularly for cataplexy. When I told the group about my success with Effexor over the past 5 years, hardly anyone had heard about this new medication. Although it was approved for treatment of depression, at that time the only medications known to treat cataplexy were antidepressants prescribed off-label. I was saddened by the realization that so many were needlessly experiencing frequent cataplexy in spite of this highly effective option. Here and there those who had read my posts discussed Effexor with their physicians, tried Effexor and achieved similar results. The activist and advocate in me were born as I was moved to speak out and spread the news about Effexor to patients as well as the medical community.
At this pivotal point in 2000 I was approached and invited by Tracy Nasca to join the Talk About Sleep effort. I embraced her vision completely. The idea of a regularly scheduled live narcolepsy chat was tremendously exciting and I am proud to have been a part of the original team of chat hosts. Knowing that you've helped one narcolepsy patient is reward enough, but the reality is that TAS chat hosts educate and empower hundreds of narcolepsy patients every year to restore some of quality of life that narcolepsy has taken from them. And while I expect to be hosting a narcolepsy chat well into the future, my involvement in the narcolepsy community didn't stop with TAS. In mid-2003, I was appointed to the Board of Trustees of Narcolepsy Network and have served as President since October 2003. No one understands or accepts the limitations narcolepsy imposes better than the members of our community. Together, we bring out the best in each other. Through the volunteer work we do we restore the sense of purpose that is so vital to a person's emo tional well-being. More than anything, I cherish the many lifetime friends that I've made because of narcolepsy and the constant support and encouragement we share.