Sunday, May 24, 2009

guinea pig...

a couple of months back, i got a phone call from a medical research company. i had contacted them about five years ago because i had stumbled across something interesting while doing some web research on stuttering. when i contacted them five years ago, they were in the initial stages of a clinical trial for a drug to treat persistent developmental stuttering.

the drug, pagoclone, had been developed and tested as a mild anxiolytic, but the clinical trials resulted in the drug manufacturer declining to proceed with marketing the drug, not because of any safety concerns, but because as an anxiolytic it did not bring anything to the marketplace to justify further development. in one of those twists of fate, a doctor in california had a couple of volunteers for the anxiety study who stuttered. the doctor noticed that during the study, while they were on the drug, their stuttering improved markedly. when the study ended and the drug was withdrawn, the stutterers returned to 'normal.' based on those results, the drug company made the decision to pursue marketing pagoclone for the treatment of persistent developmental stuttering.

i had contacted the atlanta institute of medicine and research in 2004 about participating in the study. i made the decision then that i would not participate, in part because the trial would be conducted from atlanta and making repeated trips to atlanta with my ten year old car did not seem like the best idea.

in early march, i got a call from the atlanta institute and was asked if i would be interested in participating in this stage of the trial. i agreed to sign on as a volunteer, though in truth, i had not fully considered how long a one day trip to atlanta and back would be. i made the initial trip to atlanta on march 18, where i was given a physical examination and videoed to determine that my stuttering met the needs of the study. on march 20, i got a call from wake research associates in raleigh asking if i wanted to participate in the study. given the fact that it is half the distance to raleigh that it is to atlanta, i dis-enrolled in the atlanta study and enrolled in the raleigh study instead. i had to have another physical examination and i was videoed stuttering again.

this past monday, i went back to raleigh, was videoed stuttering again and given my first three courses of gel-caps. as the study is being conducted as a double-blind for the next 32 weeks, i do not know what i am taking at present. there are three groups in the 32-week study, one group gets 30mg b.i.d., one group 60 mg b.i.d., and one group takes a placebo. at some point during the study, half of the first group and half of the second group will be given a placebo for 15 weeks, while half of the palcebo group will get 7.5mg b.i.d. for 15 weeks.

the hardest part of the study is being videoed stuttering. the instructions are to speak in my normal voice and not use any of the tricks or devices that i have used to not stutter. the difficulty with that is two-fold. first, being videoed stuttering is very stressful. i've stuttered for over 50 years and i still don't enjoy it. it is still personally upsetting and embarrassing. the other thing is, i have spent most of the last 50 years trying not to stutter. i have tried so many different strategies that i can't even remember what they are.

the reason that i agreed to participate in this study in the first place was not necessarily for myself. i have pretty much made my peace with my speech. it no longer dominates my life as it did at one time many years ago. it took a little time for me to realize it, but there are much, much worse problems that a person could have. given that, stuttering is hardly worth the concern.

my reason for participating in the study is because i recognize that this drug has the potential of being a real game changer for some people. i remember what it was like as a teen and young adult struggling to find a place in the world and being so dreadfully self-conscious about my speech that i actually allowed it to impact practically every aspect of my life. if by participating in the study, i can help get a medication approved that could ease the way for someone's child to have an easier passage through the trials of early adulthood, i am happy to be on board. no one should wish they could end their life because of the way they speak.

Wednesday, May 6, 2009

and now, the rest of the story

when the previous post was imported into facebook, i tagged a dozen or so of my friends as being 'mentioned in the post.' i owe those people an explanation, so in the words of the late paul harvey, here is the rest of the story.

i knew that tagging my friends could possibly provoke some strong reactions, and it did. so first off, let me offer my apologies for any pain or confusion i may have caused. i count those tagged as some of my dearest friends and have only the fondest of memories in their regard. contrary to appearance, my purpose was not to call attention to myself or the sufferings of my own teenage angst. i do not suppose that the 'pain' i went through was necessarily any worse than anyone else's. the reason my friends were tagged is because of their role in the rest of the story.

you see, it was a few days after the pivotal event of the previous post that i came home from work one night, sat down in a chair in the den of my family's home, and started writing. when i had finished writing that night i had completed the stage portion of a 'musical' play. i left blank pauses in the text where the songs would be inserted, and over the course of the next week or so i wrote the songs to backfill the blanks. there was only one song included in the play that i had already written, and that was 'to live is christ.' [tom actually asked me about that song a while back, and unfortunately he had gotten the tune stuck in his head... sorry tom.] the title i gave to the play was 'i'm a lot like you.'

the reason my facebook friends were tagged is because they were a part of that experience. i shared the play with sylvia strickland after i had finished it, and she excitedly insisted that we [the choir] had to do this for the church. i was reluctant and afraid of what i was getting myself into, but once i told sylvia there was no turning back. the die was cast, it must be done. some of those who were tagged were part of the practices and performance of the play and others were part of the audience. at the moment, i can't recall all of the players on stage. there were three parts... i know melaine agreed to take one part, gwyn, i think, took another, but the intervening thirty-five years have clouded my memory and i'm having trouble recalling who the third player was on stage.

the play was performed only once, on sunday night, september 22, 1974. it was the first night of the youth revival. the church had flyers printed up and posted around the community. i used to have one of the flyers, but i don't know where it is now. the performance was audio-taped on one side of a two-hour cassette, but i never labeled the tape and it was inadvertently recorded over a few years later. i didn't actually see the performance, i was behind the set playing a borrowed guitar for the choir. [i borrowed a gibson acoustic guitar that had a pick-up in it so i could plug into the sound system.] i think i still have a copy of the play, but i'm not sure i could find it in less than a week.

i guess the only place that play exists now is in the collective the memory of those facebook friends and maybe a few others. i had someone tell me some years ago that the play had been a turning point in his life.

it's amazing how one action can affect so many others. we never truly know the effect of our words or actions. for the un-intended consequences of the previous post, i apologize, but now you know the rest of the story.

Sunday, May 3, 2009

with a little help from my friends

i have been on facebook for over a year now, but only starting using it last fall. the idea of social networking is somewhat new, and presents its own challenges to people like me, who do poorly with the social interaction thing in the first place. i imagine that most people who read my blog do so on facebook, rather than on the actual blog itself. this post is specifically for that subset of my facebook friends who were a part of mizpah baptist church when i was in my late teens.

i don't really know what other people thought of me, or if anyone knew the turmoil that i struggled with for much of that time. i couldn't hide the fact that i was weird, but i did try to hide the struggle. it may come as a shock to many of my friends to learn that i was really very close to suicide for quite some time then. just before my nineteenth birthday in january 1974, i was ready to close the book on my life.

there were a number of reasons, i suppose, though trying to articulate them now is difficult. it's hard to explain the workings of a teenage mind. the truth is, i just didn't fit in. part of the fun of being on facebook and re-connecting with people that i knew then is reading the group posts about things that happened 'back in the day.' sometimes those same posts only serve to remind me how much i missed out on during that time.

for most of my teens, stuttering ruled my life. no one then had ever heard of asperger's syndrome, though in retrospect i was a classic portrait of the asperger teen. of one thing i am certain, everyone who knew me would agree that i was weird. [i'm still weird, so don't get too caught up in the past tense of the verb.] from my vantage point, however, the stuttering overshadowed the weirdness. it was the root of all evil in my life. the demon that pursued me unrelentingly.

i didn't date when i was in high school. not because i didn't want to, or because my parents wouldn't allow it. the painful truth is that i didn't date in high school because no one that i asked would go out with me. perhaps part of that is a result of me asking the wrong girls. a bigger part simply goes back to that asperger trait of not being able to adequately read other people's feelings. after being shot down in flames a few times, asking someone out gets a little more difficult. it's hard to hear 'i have to wash my hair' as an excuse, though that is so much easier than hearing 'wait a minute. hey ya'll, listen to this... ok, ask me again.' hearing that actually makes hearing 'you're kidding, right?' easy to hear. after a while, trying simply isn't worth the effort.

which brings me to january 1974. i was starting my second semester at francis marion and working part time at sky city. my job was my only social life; not that i dated anyone there, though i would have liked to do so. i was the guy that the girls there would come to with their boyfriend questions. [does anyone else see the irony here?] i desperately wanted someone to want to be with me, but it wasn't happening, and they were asking me relationship questions. [a cruel torture if you think about it.] i blamed it all on my stuttering, which i was sure would be with me for the rest of my life. i was ready to die, and had started looking into ways to accomplish my death without experiencing further pain. all i wanted to do was not hurt any more. i had had enough.

so why am i still here? what happened to pull me back from the edge? my church friends happened, though i am sure that comes as a shock to them. the pianist/choir director at church was a dear saint of god, sylvia strickland. at that time she was organizing the young people at the church into a youth choir. she was insisting that i be a part, though i was more than hesitant. i felt i was too old, since the target group was junior high and high school youth. sylvia was insistent. i had to come to the practice. i was as reticent as she was insistent. the choir was to practice at 6 p.m. on sunday afternoon. i was not going. at 5:50, i still was not going. i agreed, however, to drive my younger brother there, so off we went. my intention was to sit at the back of the church and not participate.

the plan changed as we entered through the swinging doors at the back of the church. mitch went in first and i followed a few steps back. as i entered the sanctuary, what i can only describe as a cheer went up from the twenty-plus young people assembled. shouts of 'yay, robert's here,' rang out. perhaps sylvia had prepared the group in anticipation that i might show up, i don't know. it seemed spontaneous and genuine to me, however, and it came at exactly the right time. for a moment, i felt like a star. i felt, if not adored, at least well-liked.

i can't say that i haven't entertained the notion of a final exit since then, but i don't think i have ever been as close as i was at that time to doing something i would not live to regret. i know several people who have taken their own lives over the years, and, in a sense, i feel i can empathize with them in many respects. one thing of which i am certain, life is not meant to be lived alone, it is meant to be shared. that sunday afternoon at mizpah was a turning point for me. i would not imagine that anyone else remembers that afternoon, which would be fitting. i believe that often the things which touch other people's lives the most are the things which we ourselves forget.

it's been a dozen years since sylvia took her place in glory. i still think of her as someone who acted as a guardian angel. i got an opportunity to stop by her house just before she died and thank her for what she had done, and she had no idea. in all honesty, though, it wasn't just her. everyone who was there that afternoon helped to save my life. i wish i could thank each of them personally, but i don't know all who were there. i know that some of those who were there have already shed this veil of tears. to those who read this, thank you. i leave you with a line from an old beatles tune... i get by with a little help from my friends.