|
I meet with Mr. Sonoro in the lounge of the sleep disorder clinic on 53rd, an hour before the Narcolepsy Network bi-monthly meeting gets underway. Mr. Sonoro is a man of great corporal expanse, with large folds of flesh billowing over the waistline of his pants. He is disheveled, and has eyes that sag and confer a strange sense of unhappiness and anger mixed with hope. He is 41. He is presently working on a chocolate candy bar and diet soda as I take a seat beside him. In between rapacious attacks on the candy bar, Sonoro, needing no prompting, says that he has a unique condition which compounds the narcolepsy; he also suffers from insomnia. Unable to sleep when he wants to, and involuntarily falling asleep when he doesn’t want to, one can understand his unkempt appearance. The insomnia came on about 2 years ago, just before he was fired from his last job. He had been a night-shift county road worker, but was released from the position because of his inconsistent work manner. His supervisor apparently did not mind his sleeping on the job, but complained that he would wake up at the most inappropriate times (Mr. Sonoro, not the supervisor). Sonoro was crushed, as he greatly enjoyed wearing a hard hat and safety orange. He has not procured employment since. I cut into his narrative to backtrack a bit. I ask him when he was diagnosed with narcolepsy. Sonoro tells me he was diagnosed 17 years ago, but has always felt mild symptoms of excessive daytime sleepiness (EDS) and sleep attacks, sleep paralysis, and hypnagogic hallucinations. He recalls difficult grade school days of admonishment for sleeping during class, waking up with a temporary inability to move, and periods just before sleep filled with vivid, realistic, and often nightmarish dreams. And then 17 years ago the cataplexy began. Sonoro explains that cataplexy is the hallmark symptom of narcolepsy, precipitating a sudden loss of muscle control. This can be as relatively innocuous as a slight feeling of weakness and limp muscles (facial sagging, head nodding, knee buckling, garbled speech) to immediate, total bodily collapse. It seems to me that cataplexy is also the hallmark symptom of alcoholic inebriation, but I keep this to myself. An attack of severe cataplexy is not the same as a sleep attack, which is a short, irresistible episode of sleep. During cataplexy the narcoleptic may appear unconscious, but actually remains awake and alert. I ask how his condition has affected his personal relationships. He tells me that he has few friends, and that when in the company of others he must tell them what to expect and how to help in case of an attack. This entails assuring his safety and comfort, relieving any unnatural bending of limbs or other bodily contortions, and waiting for spontaneous recovery to occur, no small tasks when applied to a man of Sonoro’s girth. He says that his condition has made it especially hard to carry on intimate relationships. At this his eyes focus on a point a few feet above and behind my head, and his voice seems filled with regret and melancholy. Suddenly his eyes roll back and his head slumps forward in narcoleptic torpor. I am thankful that we have just gone over this, and lift his head back towards the wall and place it gingerly against a pillow. I wait. And then he snaps back to consciousness. “I’d answer you but I haven’t read that yet,” he says through bleary eyes. “Pardon me?” I ask, raising my eyebrows. “What? ...Oh, I was saying that intense emotions, such as laughter, anger, surprise, or elation can bring on cataplexy.” Or sadness? I tell him it is not necessary to go on about his ex-wife if the subject is too emotional, but he assures me that I have just witnessed the onset of a sleep attack, and not cataplexy. Sonoro continues, recounting how he was stricken with cataplexy during the wedding ceremony, right there at the altar, and keeled over onto the priest, who suffered a broken ankle and crushed lung under the fall and strain of his enormous weight (Sonoro’s, not the priest’s). “I should’ve taken that as an omen and an indication of the problems I would face in that relationship because of this damned narcolepsy,” he says with sadness and bitterness in his voice. Offering more information than I ever wanted to know, he tells me that often times he would have an attack in the midst of their sexual encounters. “The funny thing is, unlike most men who just roll over and fall asleep, I was always very open to the snuggling and cooed proclamations of love afterwards... well, the insomnia may have had something to do with that. But I just couldn’t get to ‘afterwards’. Bea was understanding, but in the end it was just too much for her to bear, particularly when I was on top.” Try as I might to block them out, the visuals began creeping into my mind and I quickly changed the subject. I ask what kind, if any, treatment he is receiving for the narcolepsy and/or attendant insomnia. He says he is on a medical regimen of Mazindol, a central nervous system stimulant for the EDS, Clomipramine, a tricyclid antidipressant for cataplexy, and a self-prescribed substance of unknown origin, most likely a depressant, for the insomnia. He says he has wild mood swings and periods of flat affect, but prefers to feel nothing, as this decreases the likelihood of cataplexy. Members of the Narcolepsy Network begin filing in (mostly in pairs) and milling around, and the murmur in the room becomes a warm hum. The Network is more of a support group than a networking group; few of the members are actually employed. Sonoro tells me that during meetings they share experiences, discuss new therapies and medical advances, and offer each other friendship and support. By the very nature of support groups, the Narcolepsy Network meetings are often emotionally charged, and it is not uncommon in that conference room on the second floor of the sleep disorder clinic on 53rd to find all participants frozen with cataplexy in the appearance of peaceful sleep. This is why the group has elected a non-narcoleptic to preside over each meeting and monitor the members’ safety. As Sonoro and I stand up to bid each other goodbye, I take a good stretch. I cannot seem to suppress a yawn, hand over my gaping mouth. Sonoro glares at me as if I have just played a cruel joke on him, and I apologize. He shrugs and then smiles, and lumbers off into the conference room. Copyright 2/99 Jennifer Chung. All rights reserved. You are getting sleepier... |