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February 2008 - Posts
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One of the events going on this week that I can blog about (because I know neither of them will mind) are two of my friends that have landed in the hospital this week. I’ve dubbed them “the hospital twins” because they went in on the same day and called me within minutes of one another to give me the news and ask me to pass along the info to the other one. He he he he…..
It was a bit jarring when they first went in because there are a few other very sick HPS’ers right now. How many people can we have in the hospital at one time? How many people can get bad news from their doctors all in the same week?
When Sheena called to tell me she was MIA because she was in “the joint” (the hospital) I thought to myself, oh man, not another one. And when Karen called 10 minutes later I said out loud, you’ve got to be kidding me!
The great news is the hospital twins are doing just fine. Neither of them turned out to have too much ultra serious going on – not that they didn’t need to be hospitalized – but you can think of it as sort of putting the car in the shop for a tune up as opposed to a complete overhaul.
Sheena was ultra dehydrated, which is a common problem for those of us in the ostomy club. I get dehydrated very easily and you sort of have to learn to drink all the time.
Karen is having belly pain. We still don’t know why, but her vitals are good. They test for all the worst stuff first, and those tests have all come back good, so likely she was just laid low by a bug. When you’re taking meds that suppress your immune system, it can happen.
Hopefully they’ll both make a break for it sometime this weekend. As Karen put it yesterday, “I sure would like to eat something that requires teeth.”
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If I started to explain the events of the last seven days to anyone outside of the HPS inner circle world, no one would believe me. They would think me some sort of physiological mess on the prowl for attention because the story would be so over the top, it wouldn’t seem really possible.
I can’t blog about all of it just now. Too many things remain unresolved and privacy must be respected. But, lets just say this has been one of those weeks when balancing my work life and my personal life has been quite the chore. I can’t help but be somewhat proud of myself for pulling it off – although no one from either camp could possibly fully appreciate the task, except maybe Donna. Grin!
It was a very tough week and it’s not over.
My joints have really been bothering me and so last night, at the point where I was so tired that I honestly felt drunk and yet couldn’t get comfortable, I gave in and took a pain pill. Wow! I feel so much better today. My joints still hurt, but it’s amazing how much a really good night of sleep can make things so much more tolerable.
For now I think I’m going to blog about some of the events of the week separately so as to make them easier to read. I have a lot of unloading to do.
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As I use this blog partly to keep up with my own symptoms, I should probably post I’ve had a few this week. I’m still horribly tired. I wake up tired. I fall asleep on the bus on the way to work. I feel like I need toothpicks to hold my eyes open all day, and then lately have come home to take a two to three-hour nap every evening. I’m so behind on so many things because I’m losing my evening time.
I’ve also had more joint pain than usual this week. It’s not horrible and so I’m not taking anything for it. If I did, I certainly wouldn’t be able to stay awake through the day! I’m afraid to take something at night because it’s just that much harder to get up in the morning.
My joint pain is in all the usual places – my ankles, wrists and fingers – but this week also in my knees. That’s a new one! I feel stiff when I walk around as if I’m much older than my age.
I’ve also got several sores in my mouth right now. They just appeared yesterday and they hurt, but not horribly – just annoyingly so.
And the ding dang sore under my stoma, the one that was finally healed up after a year, is acting up. It isn’t bleeding (thank God) but suddenly instead of the nice pink new skin, it’s back to feeling tender and it looks purple, almost like a bruise.
This morning when I changed my appliance, I didn’t go through the whole routine I’m supposed to go through – which probably won’t help. I woke up late, however, and didn’t have 40 minutes to change the pouch and then 20 to let it “seal” up. I had to catch my bus, so it was rip, bam, plop and run! I know I’m going to pay for that.
My acid reflux has also been acting up and not just at night. It’s been worse during the day too.
All these signs say to me HPS GI stuff is kicking up a bit – but I just can’t take off work right now to do anything about it. It has been a very stressful week, which I’m positive isn’t helping, so perhaps I’ll see if things settle down as life starts to maybe settle down a bit too.
Compared to what so many of my HPS friends are dealing with this week, this stuff is nothing.
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As I know so many of us are very concerned about the National Institutes of Health budget, I thought you all might like to read the following article that appeared on GenomeWeb Daily News. I think we've got our work cut out for us this year. President's Proposed NIH Budget Draws Fire from Scientists, Politicians
[February 15, 2008]
By Matt Jones a GenomeWeb staff reporter
NEW YORK (GenomeWeb News) - The spending cuts for biomedical research proposed by US President George W. Bush in his budget request for 2009 have stirred up worries and sparked anger in the scientific community, causing researchers and interest groups to start speaking out, with some calling it an outrage and saying the future of US medical research is being sold short.
The chatter coming out of America’s labs is that NIH grants are increasingly harder to get, funding is falling for grants already awarded, and teaching hospitals where research is conducted are feeling the pinch.
Established leading researchers are spending far more time writing grants to fight over less money, and younger researchers are finding it harder to land those first coveted awards, according to a variety of researchers, politicians, and officials from biomedical organizations that GenomeWeb Daily News spoke with this week. The bleak outlook for federal funding of biomedical research may be deterring the next generation of young scientists from pursuing cutting-edge research at a time when US science is facing growing competition for a leading place in the future from surging research communities around the world, they said.
Under the 2009 request, which the White House released last week, the NIH would receive $29.5 billion, exactly the same sum it received in 2008, even though biomedical inflation this year has been estimated to be 3.5 percent. Also, roughly $300 million of that money is set aside specifically for the Global AIDS program, leaving the figure for actual research funding at around $28.6 billion.
According to the American Association for the Advancement of Science, this budget would “continue the downward slide in federal research funding” overall and would leave the NIH down 13 percent from its 2004 funding level, adjusting for biomedical inflation.
The biomedical research budget was not met with applause from members of the Democratic majority in Congress, who may engage in another fiscal donnybrook with President Bush similar to the one that left the 2008 budget for most federal programs stalled for three months.
Representative David Obey (D – Wisc.), who chairs the House Committee on Appropriations, which will present its version of the 2009 spending plan to the Senate this summer, called the president’s budget “a dreary and irresponsible re-run of those we have seen for the past eight years – missed opportunities, misplaced priorities, and fiscal fairy tales.”
Senator Tom Harkin (D-Iowa) responded to the White House’s budget in a statement that said that a “continued freeze on the National Institutes of Health funding will have grave consequences for Americans suffering from illnesses from cancer to diabetes. It will also mean that our best and brightest young minds will be discouraged from getting into our premier research field,” Harkin added.
AAAS estimates that if this budget passes there would be fewer new research grants in 2009 than in 2008, and the success rate for grant competitions would fall to 18 percent.
“We’re finding overall that it’s a much more competitive environment, researchers are spending a lot of time applying,” and have less time to spend in the lab, said Carrie Wolinetz, director of communications for the Federation of American Societies for Experimental Biology.
Wolinetz told GenomeWeb Daily News that younger researchers are feeling the bite of flat funding first, an assertion that is supported by comments form others in the biomedical community.
Steven Salzberg, who directs the Center for Bioinformatics and Computational Biology at the University of Maryland, called the latest budget “very disappointing,” and said his office is beginning to feel the effects.
Salzberg said his center just hired two new bioinformatics scientists who are both struggling to get their first NIH and National Science Foundation grants, and like other young researchers are finding it difficult. He said he talks with young researchers “all the time” about their futures as academic researchers, and when it comes to flagging federal funds for cutting-edge studies, he grows concerned about the message being sent to the next generation of researchers.
As they survey the opportunities for biomedical careers, some researchers “might not feel inclined to go into academic research,” Salzburg told GenomeWeb Daily News.
The same problems are hitting home in the teaching hospitals of America, where many of the technologies of the future are given their first trials in clinical settings.
Funding cuts at NIH can cause “a serious problem for any academic research institute,” Keith Yehle, who is director of federal relations for the University of Kansas, told GWDN. “Flatline funding means we have less of an opportunity for our established NIH researchers to secure new competitive grants, and even established researchers don’t get full funding,” he said.
“But the biggest problem is not the established researcher; it’s the junior faculty who are just starting and who just go their PhD’s,” Yehle said. “They’re at risk of not being able to get their first or second research grant until they’re 41 years old.”
The Association of American Medical Colleges, meanwhile, said that the White House’s “unprecedented” budget cuts will “erode medical progress” and that there “must be a stable and sustained federal investment in the NIH that at least keeps pace with biomedical inflation.” It added in a statement, that the impact of the proposed budget cuts “will have a damaging long-term impact on the health of all Americans and the future economic vitality of our nation. We call on Congress to immediately reject these short-sighted recommendations."
If this year turns out to be like the last, then Congress could propose an increased appropriation for the NIH and plan to fight over it with the Bush Administration.
“Ultimately, there will be a fight, and the election year certainly complicates matters,” Wolinetz said. However, she thinks it is unlikely that Congress will push Bush beyond the budget deadline in October again, as it did last year.
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Don’t worry folks – I’m okay. I’m not sick as in sick, sick – just the usual stuff. I haven’t blogged much this week, but it’s been quite a week. I just haven’t had much of a chance. There are a lot of things going on in HPSland (more on that later) and I’ve had sort of a rough week personally (more on that later too.)
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 This is my brother, Ryan, who I never thought I'd ever see on a dance floor, cutting a rug at last year's conference. He he he he....and his sister with the camera caught it!
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It’s getting close to conference time! So, I’ll be posting a few things about what you might expect at this year’s HPS Family Conference.
This year (we have done this in the past too) we will have a separate session for adult HPS’ers, for parents of HPS’ers and then if there is a large enough group, one for spouses, partners, friends, cousins or anyone else who serves in the role of supporting someone with HPS.
I mention this so you’ve got a chance to think about any issues you’d like to bring up during this unique opportunity to talk face-to-face with others walking in your shoes. This session will be after the big circle on Saturday, before lunch.
We all have our “issues” surrounding HPS and they are different depending on what role we play in the HPS community and where our HPS loved one is at with the disorder. For parents of younger children, issues might surround first aid, IEPs and building independence among little ones with low vision.
For adults with HPS, there are sometimes issues that they might feel awkward bringing up in front of family or friends. So often we don’t want people to worry about us, and we don’t talk about things like dating with HPS, or communicating our limits to our loved ones, or how we really feel about our lung disease. The list goes on and on.
And I’m sure that spouses, boyfriends, girlfriends, friend friends and extended family have questions and needs of their own, and in the past we really haven’t addressed those needs. It’s a chance for them to ask questions and bring up anything we could be doing better to serve them.
So, give it a little thought and bring your observations and questions to share with others.
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I’ve been so busy that I haven’t had a chance to blog about much personal lately. To be honest, anything personal is sort of boring. If sleeping were an Olympic sport, I’d be a gold medalist. This is weeks now that I’ve been so amazingly tired. It isn’t tired as if I didn’t get enough sleep the night before. It’s the sort of tired where I get home from work, fall asleep watching the news, and wake up the next morning. I’ve started setting my alarm for the next day when I walk in the door from work, just in case.
I’ve been to the doctor and besides coming off of “that time of the month” and having a slightly low thyroid, nothing much is wrong. Something doesn’t add up, and no one seems as concerned about it as I do. Is it physical or emotional – I suspect it’s both. The only other thing is my joints are acting up and are constantly sore. Usually they only get sore when I’m having, or about to have, GI troubles. But my GI is pretty good, overall. And the joint pain isn’t horrible – just annoying.
Wednesday at work I had a code brown (an ostomy leak). Thankfully that hasn’t happened in months, but when it happens it’s such a disaster!
Luckily it didn’t start until the very end of the day. If it had started 10 minutes sooner, I could have caught the early bus home. Unfortunately, when it started, it sort of exploded. I did the best repair job I could in the bathroom with paper towels and surgical tape – but the problem was so far gone so quickly that the appliance had come completely off.
Talk about something to make you anxious. There was no chit chatting with the boss on the way out the door. I couldn’t risk missing my bus with this mess on my hands. I would have called a cab, but it likely would have taken just as long to get home by the time I waited for the cab to arrive.
It was freezing cold outside waiting for the bus, and by this time the pooh had started working its way down my leg. Yuck! Luckily I had a long coat on. I wondered if anyone would be able to smell it? Oh Lord, get me home! The bus was running late and gravity was not on my side. I called Karen, my ostomy buddy, whimpering. I don’t know what I wanted her to do about it, but I guess it helped relieve my anxiety just to whine to someone who understood.
Finally, I got home. My underwear, which I’d only bought the day before, was beyond being reclaimed.
I stood in the shower, at this point in tears, and all be darned if the little sore with staph on my *** that had been healing so well started bleeding. I don’t know why. Maybe when I took my bra off it took the scab off? So now I had two messes on my hands, and the last thing I wanted was for the staph mess to potentially get into the ostomy mess. The sore by my stoma is all but healed after a year! I didn’t want to get anything going there again!
Talk about an HPS moment. Nothing that bleeds ever stops bleeding easily. It took me a good hour to solve both problems.
To make the sore better by my stoma, my ostomy changing routine has become much more complicated. Not as bad as Karen’s, but it can sometimes be a bit of a challenge trying to do it by myself.
After I get the skin cleaned, which can be a chore if the little stoma is active, I have to cut these Kolstat strips to the size of the sore on the bottom of my stoma. They’re supposed to help it heal etc. Then I have to take stoma adhesive powder and get it around the area without squirting or blowing it everywhere else. Too much and the surgical tape won’t stick. Then I have to take stoma adhesive paste and put it around the stoma, and then take an eakin seal and put it over that – all while controlling Lurch the exploding stoma. And then I can get a pouch on. It takes quite a production, but it has helped.
My new insurance, however, doesn’t cover my ostomy supplies 100 percent. These items are NOT CHEAP! It’s pretty sad when your medical co-pays a month are more than your rent.
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Donna passed along the following message for anyone in the area that might want to participate. I can't attach the flyer here, but the tickets to the hockey game are $10 each - if you want some I'll put you in touch with the family organizing this event. From Donna:
Dear HPSers and Family and Friends, A wonderful family in Mass. has arranged for an exciting night for HPS. The Falcons Hockey Team will be playing two games and hosting an HPS Awareness Night. An local team (the dad of our little HPSer!!) will be playing a game before the Falcon's game. They will be wearing Jersey's that have our Logo on them!!!!! Pl ease consider coming out and cheering them on. Bring friends and family and lets make a night of it!! The local hotel, Sheraton Springfield, has put aside rooms for the HPS Network for $95.00/night. The number is 413.781.1010 or 800.426.9004. For tickets for the game please see the attached flyer. Lets support this family and their efforts on ourbehalf. Any questions do not hesitate to call the HPS Network at 800.789.9477. Ifyou can't make this one then consider the game in April.Thanks Donna Appell
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My little “oh no” antenna has been activated. First, let me say to be completely fair, I don’t know anything about this movie. But, when I read this article about it my conditioned “gee Hollywood is at it again” radar just went off – fair or not. Let’s face it. Hollywood has just about as lousy a track record depicting visual impairments as they do depicting albinism.
Just as people with albinism are so regularly portrayed as evil, people who are blind are most often portrayed as objects of pity, incapable, bumbling, lost, unable to be independent or find their way, miserable, depressed or just plain stupid.
So, when I read these paragraphs from the story about this movie, I was a little worried.
For the crew and cast, which includes roughly 700 extras, making "Blindness" was alternately frightening, draining, and exhilarating. That was especially true of training to act "blind," says Christian Duurvoort, an actor who coached his colleagues in a series of workshops.
Just as important as understanding the physical mechanics of being blind, Duurvoort says, was helping the actors deal with "the emotional state, the psychological state, being vulnerable." Meirelles had emphasized that he wanted the extras to seem like desperate, traumatized human beings, not B-movie zombies.
Practically everyone working on the film donned a blindfold at some point, even the producers and the director.
In one exercise, the main actors were blindfolded and told to follow the sound of a bell. Ruffalo particularly had trouble and kept wandering around getting more and more lost. During shooting, Ruffalo wore special contact lenses that rendered him blind, though his eyes were open.
What is the “psychological state of blindness” anyway?
The thing about sighted people wandering around with blindfolds is that their experience has nothing to do with what it’s really like to be blind. I’ve always been skeptical of such exercises. It seems as though they only serve to make sighted people afraid of blindness or to reinforce how “helpless” it must be to be blind. When you walk around with a blindfold for a few hours, you don’t have the time to learn the alternative techniques real blind people use daily to be independent and successful.
The only reason I give two shakes about what Hollywood thinks of the whole blindness experience is that so often the negative stereotypes about blindness, or low vision, are actually believed by the general public. It’s these stereotypes that create massive unemployment rates among blind and visually impaired people, discrimination on the job etc.
So, all I’m saying, for now, about this movie is look out and beware – lets keep our guard up and be prepared. More research is warranted.
In filming 'Blindness,' director focuses on modern horrors
By Reed Johnson, Los Angeles Times February 19, 2008
SAO PAULO, Brazil - Mark Ruffalo and Julianne Moore are traipsing through a trash-strewn urban wasteland, scavenging for salvation. All around them, dozens of pitiful human beings dressed in filthy, mismatched clothes grope their way past wrecked cars and graffiti-splattered highway ramps, like dancers in some grotesque ballet of the damned.
It's not a pretty sight, but it's impossible to avert your eyes - which is exactly the point. Director Fernando Meirelles and his camera crew are gearing up to shoot another take of "Blindness," a feature film based on the harrowing 1995 parable about an unnamed city stricken with a plague of sightlessness, by the Portuguese Nobel Prize-winning author Jose Saramago.
Like nearly everyone in the film, Ruffalo's character, an ophthalmologist known simply as "the Doctor," is afflicted with a terrifying malady in which the eyes appear normal but are coated with a milky whiteness that blocks out vision.
The only person immune is Moore's character, the doctor's heroic, steadfast wife. As the story gathers speed, she must guide her husband and a small group of fellow sufferers (played by Danny Glover, Alice Braga and others) through a perilous obstacle course, in a society where order has collapsed, and humans are reduced to living like animals.
Critics heralded Saramago's novel as a brutal but compelling allegory of the 20th century's house of horrors: the Holocaust, the stigmatization of AIDS patients, the ominous encroachment of Big Brother. First published amid the fin de siecle fixation on end-times scenarios, it anticipated pop culture's ongoing obsession with apocalyptic story lines: "I Am Legend," "28 Weeks Later," the Christian/sci-fi "Left Behind" books, Cormac McCarthy's novel "The Road."
If the film's new setting visually echoes post-Katrina New Orleans or a sub-Saharan refugee camp, that reflects the director's view that the message of "Blindness" is becoming more timely every day.
"Because now, especially with the environment, we're really destroying the planet, but we keep going, keep selling, keep burning. It's like we can't see," says Meirelles, whose 2002 international breakout hit "City of God," about Brazilian youth gangs, stamped him as a skilled action auteur with a social conscience to match.
Miramax has scheduled the English-language film for an August release. In book and film, blindness isn't only a physical condition but a metaphor for human nature's darker side: prejudice, selfishness, violence, and willful indifference.
"Sometimes we read about tribal wars in some countries in Africa and how terrible they are and how aggressive and how violent. And we're exactly the same," says Meirelles.
For the crew and cast, which includes roughly 700 extras, making "Blindness" was alternately frightening, draining, and exhilarating. That was especially true of training to act "blind," says Christian Duurvoort, an actor who coached his colleagues in a series of workshops.
Just as important as understanding the physical mechanics of being blind, Duurvoort says, was helping the actors deal with "the emotional state, the psychological state, being vulnerable." Meirelles had emphasized that he wanted the extras to seem like desperate, traumatized human beings, not B-movie zombies.
Practically everyone working on the film donned a blindfold at some point, even the producers and the director.
In one exercise, the main actors were blindfolded and told to follow the sound of a bell. Ruffalo particularly had trouble and kept wandering around getting more and more lost. During shooting, Ruffalo wore special contact lenses that rendered him blind, though his eyes were open.
For the characters trapped in the Hobbesian purgatory of "Blindness," the seeing are as cursed as the sight-impaired. As the growing epidemic spreads panic, hundreds of people, including the doctor and his wife, are rounded up by the government and placed in quarantine.
Rape and revenge killing come into play in the film. But so do valor, courage, and many small, redemptive acts of individual kindness. Through being blind, the principal characters discover (or rediscover) their ability to empathize with others.
Although "Blindness" won't be an easy sell, Meirelles, screenwriter Don McKellar, and the production team are trying to leaven the book's relentlessly grim atmosphere by capturing the mordant wit of Saramago's third-person narrator.
"What allows you to stomach the book is that slightly ironic, distanced literary voice. And it's also what keeps it from becoming a sort of exploitation film," McKellar says.
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The following story ran in The Braille Monitor in January. The Braille Monitor is a publication of the National Federation of the Blind (www.nfb.org) if you want to check it out. I've wanted to post it here for a few reasons. First, I'd love to someday ask Dr. Stracks about his experiences in medical school, in lab classes etc. Second, in the world of albinism new parents (understandably so) often get rather pre-occupied with how much, or how little, their children see partly because they so often see a relationship between this and what their child will be able to accomplish in life. There is no such relationship. Totally blind people can be lawyers and yes, guess what, evidently even doctors. There's nothing wrong with trying to see your best. But having a fruitful life is more about attitude than vision. Third, I just liked some of the points he made about decsion making. Enjoy! A Blind Doctor Practicing Today
by Mark StracksFrom the Editor: On Thursday afternoon, July 5, NFB convention attendees spent some time learning about overcoming obstacles in the medical profession. First John Paré described the life of Dr. Jacob Bolotin, the first person blind from birth to become a physician, when on May 20, 1912, he was graduated from medical school in Chicago. (A review of his biography, The Blind Doctor, appears elsewhere in this issue.) Then psychiatrist and NFB of Pennsylvania leader Mark Stracks reflected on his successful effort to become a physician in the last quarter of the twentieth century. This is what he said:Good afternoon. It is both a pleasure and an honor to be here today and stand before a group of people that over the past fifteen years I have come to know as friends and family. A few weeks ago, when I asked Dr. Maurer what he would like me to speak about, he said, “Tell them what it’s like to be a doctor. Tell them how you did it.” Talking with Dr. Maurer that day made me stop to think about the practice of medicine from a more philosophical perspective than I usually take. In the day-to-day practice of medicine, physicians are often focused on the schedule, the problem, the paperwork, and the oversight responsibilities with which we are charged. Often in the day-to-day doing of the thing, we lose sight of the prize and the fire that drives us toward and keeps us focused upon the accomplishment that we seek. It was therefore quite refreshing to think about the practice of medicine in the context to which Dr. Maurer referred, and I am grateful for the opportunity to share some thoughts about this with you today.There is something wonderful about being in a position to serve others. There is something exceptionally satisfying in the knowledge that one can develop a set of skills that can be put to use in the aiding and comforting of those who are ill or in distress. The opportunities to heal or, more aptly, to help others along the paths of their own healing evoke the combination of awe and humility in the practitioner, and there exists a powerful yet humbling understanding within all physicians that they are the bearers of an ongoing tradition that has spanned millennia.
It’s not your basic nine-to-five job. It is not a path to be taken lightly, but it is a path that has led many a practitioner to amazing experiences. I have always admired the character Sherlock Holmes, brought to life in the pages of literature by Sir Arthur Conan Doyle. I have always been fascinated by Holmes’s ability to observe and deduce from observation, to bring together seemingly disparate clues and weave them into a tapestry of understanding. He is the quintessential detective. This is what I am called upon to do on a daily basis in the practice of psychiatry.Psychiatry is concerned with the workings of the mind and the understanding of those things which drive us to be who we are and to do what we do. In training to be a psychiatrist, we are taught to try to understand those patterns of thought, feeling, and behavior that might color our work with clients. We are taught to train with a detective lens upon ourselves. It is in this context in recent years that I have started to wonder how I have managed therefore to accomplish some of the things that I have.We come then to the second part of my charge today, to tell you how I came to be a physician. I truly fit that old cliché that goes, “I’ve always wanted to be a doctor.” I believe that I first understood this when I was about eight years old. During that time I recall observing my father in his practice of orthodontics and the family friends with whom we spent time, many of whom were dentists and physicians. They all seemed to be very special people with wonderful gifts and abilities. They did good and exciting things. They were people who served others and gained satisfaction from their service. Mind you, my eight-year-old analysis was not that complex on a conscious level. I was drawn to what I saw was appealing even though I didn’t completely understand it. And I took inspiration from those I respected. It was an emotional response, not a logical one. This is something that we all must understand about ourselves. Whatever pretense we make of being logical is in fact a learned skill. We are emotional beings, and to the extent that we allow ourselves an undisciplined manner, we will act in emotional ways. I ask you to bear this in mind today because I believe it has a great deal to do with how I was able to become a doctor and, more important, what makes it possible or impossible for an individual to achieve any particular goal to which he or she aspires.During the time when I began thinking about becoming a doctor, something else was happening in my life. I was beginning to understand the way in which being blind made me different from other people, especially kids my own age. They felt I was different. They certainly acted as if I was different, and they certainly treated me as if I was different. None of them could explain it logically. None of them could cite a text or doctrine, chapter and verse, which laid a reasonable foundation for their claim. They saw, they felt, and they acted; and it hurt. By the time I was twelve, it was clear to me something had changed. Either I was going to pursue my life in the manner I thought I should, which meant that I would work single-mindedly to become a doctor, or something bad was going to happen. I didn’t have the sophistication as a twelve-year-old to know what that bad thing was, but I think it scared me enough that I made a decision to move forward with my dreams despite the ridicule of my peers.Deciding to be a doctor then necessitated a course of action, and many subsequent decisions had to be made. In my mind at the time, it meant inventing the wheel. I was not aware of any other blind doctors. I was not aware of the National Federation of the Blind, so I proceeded on my own. I certainly had the support of my family and friends, but I often felt alone in my quest. What I have just said may seem complicated, and again what I am relating to you today is the understanding of a seasoned practitioner of medicine and a hardened advocate for independence as a blind person. I didn’t understand what I was experiencing those many years ago; and, even as I pursued my career goals through secondary school, college, medical school, graduate school, residency training, and practice, I didn’t totally understand how it all came together.The answer comes down to the consideration of a single question: how do we make a decision? How do we decide to succeed? The answer lies in the understanding that our decision-making is heavily influenced by what we feel, often more than what we think. This is not something people like to think about. We like to believe that we make the decision we want to make, and that is that. We should also consider that the atmosphere in which blind people make decisions, the atmosphere projected by family and friends and society in general, is often dominated by fear, fear born largely of ignorance shielded in the cloak of love and caring, but fear none the less.
Fear is one of the primary emotions that we experience, and the only antidotes to fear are knowledge and experience. Neither of these, unfortunately, are we born with, but we can acquire them. And one of the best ways to do so is through the National Federation of the Blind. I can remember being made to feel afraid of being blind when I was a child. It was more the fear of being different and recognizable as different than anything else. Over time this fear turned to anger, and the anger was intense enough to compel me to make a decision that I had no way of knowing would work out for me. I had to believe so strongly and so completely in what I was attempting to do that nothing else mattered. As time went on, the conscious decision to make being a doctor happen seemed to recede into the background. The process continued. It seemed to take on a life of its own. Even though I couldn’t remember making that initial decision, it had been made, and I did not make another decision that contradicted it. Today I am a doctor. It is that same sense and intensity of belief that brings us together today at this national convention. We are stronger together. We foster belief better together. We fight misperception more effectively together. And together we replace fear with understanding and experience. We do collectively as an organization what a major theory of the mind attempts in practice. We break through fear. We bring forth enlightenment. We are, my friends, at a crossroad within ourselves every day. It is a crossroad between who we are and who we want to be. It is a crossroad that is as easy to navigate as the taking of a single step or as treacherous and impassable as the greatest chasm that exists, if we choose to make it so. This is the divide between what we believe we can be and what we believe that we are. It is the chasm between the potential limitlessness of experience that faith allows us and the finite underachievement to which fear grounds us. It is the measure of the difficulty of making one decision and then another and then another to bridge the gap or be stranded forever on the edge of who or what we could have been.Amelia Earhart once said, “The most difficult thing to do is to make a decision to act. The rest is merely tenacity. The fears are paper tigers. You can do anything you decide to do.” Ralph Waldo Emerson once said, “Once you make a decision, the universe conspires to make it happen.” And the actor Michael J. Fox, when speaking about his experience in battling Parkinson’s disease said the following, “Nobody would choose to have a disease visited upon them. Still, Parkinson’s forced me to make a fundamental life decision. Adopt a siege mentality or embark upon a life journey.” For me becoming and being a doctor has been a wonderful journey. Becoming a doctor was not an accident. For each of us, whatever our dreams or desires, everything is possible if we only dare to make it a reality.“To be or not to be,” Shakespeare once wrote. “That is the question.” And it continues to be the question placed in front of us this very day. May we as individuals and as an organized movement of the independent blind continue to answer this question with a resounding “We shall be. “we must be.” And no person and no idea will ever stand in our way. [applause]
I would like to thank Dr. Maurer for the opportunity to speak today, and I wish all of us complete success in our pursuits. Thank you.
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  Saturday was our local bowl-a-thon for NOAH, the National Organization for Albinism and Hypopigmentation. I met up with Lyra’s family – her mom, brother and dad – for a little bowling, although frankly I could have cared less about the bowling. I had a ball watching the kids.
Mashawna, Lyra’s mom, is the one who made the albinism cuties video you all saw here a few weeks ago. You can find her blog, Parent of a Child with Albinism, on the blogroll. And Lyra’s brother Dominique has quite the arm for a six-year-old. That kid got several strikes! Way to go Dominique.
Above are some pictures Mashawna sent me last night of Lyra and me.
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John McCutcheon is one of my favorite singers of all time. Not only is he a tremendous musician, swapping musical instruments throughout his performances without losing a beat and proving his accomplishment on all of them, but I happen to love his political commentaries. I’ll warn some of my more conservative friends, you might not find them as funny as I do – but I think they’re hilarious.
Friday night John McCutcheon was in Kansas City for the first time since 2004. He plays the Walnut Valley Bluegrass Festival every year in Winfield, Kansas – but recent CPAP, ostomy, bleeding, allergy etc. drama has made camping out at the festival a bit tough for me.
Needless to say, doctor’s appointment and dizziness aside, I had to be there Friday night. I went straight from the doctor’s appointment, splurged on a long cab ride, and met a whole contingent of friends and fellow John McCutcheon fans for the concert. When I started having those dizzy spells again Thursday, my first thought was that they had to stop because I couldn’t miss this concert!
And John didn't disappoint. The only downside of the concert was that it didn’t last all night. Grin!
There was one song that was new to me that I thought was particularly funny. I’m going to include the lyrics here, but John has a free MP3 of the song on his Web site at: http://www.folkmusic.com. You’ll also find free MP3s of a few of his other songs there too. Look on the right side of the page in blue. You’ll also find a link to see video of his performances at the Kennedy Center.
At any rate, working on fundraising for a non-profit, I couldn’t help but have a little special love for this song.
Puppies
Words & music by John McCutcheon(September 2007, White Sulpher Springs, WV)
Leona Helmsley had a puppy
Trouble is its name
She left her pup 12 million bucks
Leona was insane
Trouble will be buried
When she barks her final time
In a mausoleum
Bigger than your house or mine.
At the other end of puppy love
We have Michael Vick
His treatment of his puppies
Proves that Mike is just plain sick
He trained his puppies from the start
To kill or to be killed
You gotta stop and wonder
Where such thinking was instilled
We have puppies everywhere
In our cars and laps
If you ever hurt a puppy
We’re gonna give you crap
I have a dog, I love my dog
More than I can tell
But still I wished we treated humans
Nearly half as well
When humans beings fight other humans
We gather, cheer and bet
When we cage our fellow humans
Everyone forgets
We read of murder and starvation
And simply turn the page
But if a single puppy's harmed
Everyone's outraged
So we need puppies in Guantanamo
Puppies in Darfur
So we can get upset enough
To care to find a cure
Puppies need a living wage
Puppies need health care
Puppies need a helping hand
From humans everywhere
Illegal alien puppies
Puppies lost or lame
We rush right in to rescue them
Make sure they each have names
If we treated folks in need
That well both near and far
We might become the persons
That our puppies think we are
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Before Christmas I started talking on the phone with a new HPS friend named Janet. Janet lives in the Chicago area and didn’t realize that she had the HPS type of albinism until her lungs were already quite sick. Her lungs were too sick for her to participate in any of the trials at NIH, and thus a lung transplant was her best option.
Getting on a transplant list is no easy task. Janet has patiently undergone every test asked of her and weeks and weeks of medical scrutiny. This last week she got the call she’s been waiting for – she’s on the list.
It’s a victory for Janet, but it’s also a victory for the HPS community. Thanks to people like Janet who have the tenacity to hang in there, even when things are very tough, future HPS’ers in need of a lung transplant will have it just a tad easier.
It wasn’t so long ago HPS’ers had a very difficult time finding a transplant team that would even talk to them, let alone do a complete work up to evaluate them for being listed for transplant. They were afraid of the bleeding associated with HPS, even though our bleeding can be controlled with platelet transfusions during major surgeries like this one.
Then in the last few years we finally broke through. We had two successful lung transplants – two very brave men who fought the system and found wonderful doctors willing to give them a shot.
And now today we have two HPS’ers who are anxiously awaiting that special call to tell them that another family, out there somewhere in the midst of their own loss and grief, has made a gift of life and given them a second chance. They are trail blazers, and we will all benefit from their experience.
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Okay, this fatigue thing is getting out of control. It’s been, shall we say, an HPSish female time lately, so I guess it’s no wonder I’m so tired. But, it seems like I’m always tired, no matter what the time of the month or the state of my health. I could just quite happily spend half my day in bed.
I start to wonder how much of that is physical and how much is psychological. To say I’ve been under a lot of stress lately would be the understatement of the century.
Yesterday I stayed home from work. I had acid reflux to beat the band all night and got pretty much no sleep. My gut just felt acidy and every time I’d lay down, here the stuff would come – yuck. I didn’t intend to miss a day of work. I got up and started to get ready for work, but felt like my body parts had cement in them. I decided to stay home and try to work. But, when I got up, fired up the computer and started trying to work, I kept getting dizzy spells.
It’s a bit hard to interview people and stare at the computer screen when you feel like that. I cancelled my interviews for the day and went back to bed. I don’t think this is making my employer, with our pending deadlines, very happy.
This afternoon I have another doctor’s appointment, but of course I feel much better today. I just slept for an entire day.
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