In reference to the comments on Entry 62, the conclusion of the doctors that I worked with back in 1984 was that my problems were not caused by thalidomide. In addition, my mother was not prescribed thalidomide during her pregnancy or had access. Question for another time... but what if... ? (Referred to at the end of this entry... )
Also, I’m 48 years old and have exhibited none of the symptoms which you describe for those in middle age. Also I have none of the internal symptoms that were associated with thalidomide which was one of the factors that led to the conclusion above.
As stated in the previous entry the professional’s conclusion was that I fit into a category called Moebius Syndrome…
I find your comments intriguing and appreciate you putting them out for others to read.
I have always been one that thinks we spend too much time changing words to change attitudes. For instance, the word crippled was used which eventually changed to handicapped which eventually became physically challenged… However I am struck by the phrase “Thalidomide Monster”
I think it’s very important for us to understand who we are and what problems we have or will have, however in earlier blog articles I talk about Maslow’s Hierarchy of Needs. One of the things that I am trying to focus on in my blog are those things which bring us together, unite disabled individuals. These are the things that I think can bring us as a group to a point where we might find it easier to accomplish our goals. While I think it’s important that people unite with a common issue as the Moebius Syndrome foundation has or groups focusing on thalidomide… I also think it’s important that we unite at a higher level. A level that brings together all types of disabilities in that we might see what we have in common as opposed to our differences. Read entry 53/52… for more info.
I don’t want to ever minimize anyone’s reality, what they’re experiencing, but at the same time I want to maximize what we have in common… that we’re all struggling, dealing with the issue of disability. Once we go beyond the physical, we have much more in common that what separates us… both as a group of individuals and in the world at large.
Again a question... what if I am a thalidomide baby? Other than answering cause and effect and giving me information about my body as I age... What are the broader implications in how I would live my life today?
Once we know what our condition is and we’ve begun to deal with the reality of our condition… what’s next? What kind of life do we want to live? What do we want to do with our lives? Do we want to go forward… ? Do we want to live in anger and blame? These are the questions that I want to address. I think there are those who go forward with life and those who “surrender to hopelessness”.
What do I want to spend my energy on today? This seems to me to be my question. Once I've done those physical tasks, met those physical needs each day... What then?
Life is a duality… I find it sad when I read some of the information that you mentioned about the problems that individuals are having as they age with thalidomide… it’s tragic! I also find it a strange irony that thalidomide is being used again today to treat certain diseases and problems… AIDS being one of them.
I would really like to know more about you and continue a dialogue.
I have a feeling I’ll be writing more about this issue. I think this might be a good time to begin talking about causes, blame, guilt, anger, responsibility, questioning why... All of the things that go along with being involved in the issue of disability... whether one is born with one, becomes disabled, has a family member who is...
Keep the comments coming….
Sunday, June 29, 2008
Saturday, June 28, 2008
(62nd Entry) What a week!
My 61st Entry still strikes a cord within me.
First, the idea of fundamentalism… the need to have an answer. People ask me quite often… “What happened? Why were you born the way that you were born?” It seems that Canadians ask me most often if I was a thalidomide baby. Thalidomide was a drug developed in Germany and sold between 1957 and 1961. It was prescribed mostly to pregnant women for morning sickness. Estimates vary but it believed that there were 10,000 to 15,000 babies affected by thalidomide.
In 1984 I went to the University of Texas Health Science Center Dallas… a place I had spent much time during the early 80’s having had two major surgeries in 1981 and 1982. I consulted with two individuals in the Division of Clinical Genetics. They concluded, “After reviewing your medical history and examining you carefully, we feel that your symptoms fit most closely with the Moebius Syndrome. This would account for your limb anomalies, facial nerve palsy, tongue anomalies, small mouth and facial asymmetry.” The report went on to say that the cause of Moebius Syndrome is not clearly known…
OK… the internet is so cool. I’ve had this report for 24 years and it has never occurred to me to go out to the internet and type in Moebius Syndrome. Well… I just did… You know… There’s a Moebius Syndrome Foundation.
I think there’s a time in all of our lives that we seek to find answers… and hopefully a time that we seek possibilities…
First, the idea of fundamentalism… the need to have an answer. People ask me quite often… “What happened? Why were you born the way that you were born?” It seems that Canadians ask me most often if I was a thalidomide baby. Thalidomide was a drug developed in Germany and sold between 1957 and 1961. It was prescribed mostly to pregnant women for morning sickness. Estimates vary but it believed that there were 10,000 to 15,000 babies affected by thalidomide.
In 1984 I went to the University of Texas Health Science Center Dallas… a place I had spent much time during the early 80’s having had two major surgeries in 1981 and 1982. I consulted with two individuals in the Division of Clinical Genetics. They concluded, “After reviewing your medical history and examining you carefully, we feel that your symptoms fit most closely with the Moebius Syndrome. This would account for your limb anomalies, facial nerve palsy, tongue anomalies, small mouth and facial asymmetry.” The report went on to say that the cause of Moebius Syndrome is not clearly known…
OK… the internet is so cool. I’ve had this report for 24 years and it has never occurred to me to go out to the internet and type in Moebius Syndrome. Well… I just did… You know… There’s a Moebius Syndrome Foundation.
I think there’s a time in all of our lives that we seek to find answers… and hopefully a time that we seek possibilities…
Things have been hectic, but...
I wanted to place a short entry out today to let you know that I'm still alive and thinking about the blog. I've been very busy with the new candle factory, going to market, 8 new employees and trying to survive in these precarious economic times.
I'm going to have new posts coming very soon!
Of course comments on the site or emails always are fun to receive...
I'm going to have new posts coming very soon!
Of course comments on the site or emails always are fun to receive...
Sunday, June 8, 2008
(61st Entry) Political Correctness… not me!
The other day I had two people visit my factory to check on working conditions. They are part of a major corporation in the U.S. I believe they were very impressed with our facilities. I know that I feel very good about them.
BUT… It started me thinking… Always a dangerous thing! About art imitating life, about going to far, about imposing our will on others, about many things including political correctness…
Before in my blog I’ve alluded to how we’ve gone so far in corporate culture and our society in terms of political correctness that we can’t even ask questions to another person in order that we might be able to understand them better. If we understand them better then it seems reasonable that we can work with them better. But we’re taught, told and insisted not to ask questions.
I also began thinking about the apprentice system. A system of teaching which a student studied with a master for a number of years in order to learn a trade. Knowledge was handed down from one person to another… Parent’s to their children often starting at a young age. It is a system of learning that has all but disappeared from the U.S. culture.
As I said above I was thinking about art imitating life. I’ve often said that the movie RAINMAN with Dustin Hoffman and Tom Cruise struck a cord in the U.S. because it personified what many people felt at the time and still do… that the world is changing so rapidly and that there’s just a limited amount that we can comprehend. Our senses are overwhelmed.
My good friend Mike used to quote a line… “I would rather live in the greater world of confusion than the smaller worlds of certainty.” Or would you rather live in the greater world of certainty than the smaller world of confusion? To me… The latter is the definition of FUNDAMENTALIST! The problem is that when we live in that larger world of certainty and we have a crisis… the crisis is magnified thousands of times! (Quote unknown and might not be exact…)
Last night I had a dream… it dawned on me that the show… THE APPRENTICE, produced by Donald Trump and Mark Burnett was again capturing a sentiment that had been lost in the U. S. culture. This desire to be mentored by someone… in this case Donald Trump… the opportunity to learn and have career… to be passed the secrets to success… to feel secure. THEN… in my dream it dawned on me that Donald Trump should do an Apprentice show with all disabled individuals. I have no idea if this is happening, if I might have heard it or… Can you imagine Donald Trump doing a season with only disabled individuals? Can you imagine what kind of impact that this could have for the disabled community? I say do it just like any other Apprentice Season… Let The Donald be The Donald!
BUT… It started me thinking… Always a dangerous thing! About art imitating life, about going to far, about imposing our will on others, about many things including political correctness…
Before in my blog I’ve alluded to how we’ve gone so far in corporate culture and our society in terms of political correctness that we can’t even ask questions to another person in order that we might be able to understand them better. If we understand them better then it seems reasonable that we can work with them better. But we’re taught, told and insisted not to ask questions.
I also began thinking about the apprentice system. A system of teaching which a student studied with a master for a number of years in order to learn a trade. Knowledge was handed down from one person to another… Parent’s to their children often starting at a young age. It is a system of learning that has all but disappeared from the U.S. culture.
As I said above I was thinking about art imitating life. I’ve often said that the movie RAINMAN with Dustin Hoffman and Tom Cruise struck a cord in the U.S. because it personified what many people felt at the time and still do… that the world is changing so rapidly and that there’s just a limited amount that we can comprehend. Our senses are overwhelmed.
My good friend Mike used to quote a line… “I would rather live in the greater world of confusion than the smaller worlds of certainty.” Or would you rather live in the greater world of certainty than the smaller world of confusion? To me… The latter is the definition of FUNDAMENTALIST! The problem is that when we live in that larger world of certainty and we have a crisis… the crisis is magnified thousands of times! (Quote unknown and might not be exact…)
Last night I had a dream… it dawned on me that the show… THE APPRENTICE, produced by Donald Trump and Mark Burnett was again capturing a sentiment that had been lost in the U. S. culture. This desire to be mentored by someone… in this case Donald Trump… the opportunity to learn and have career… to be passed the secrets to success… to feel secure. THEN… in my dream it dawned on me that Donald Trump should do an Apprentice show with all disabled individuals. I have no idea if this is happening, if I might have heard it or… Can you imagine Donald Trump doing a season with only disabled individuals? Can you imagine what kind of impact that this could have for the disabled community? I say do it just like any other Apprentice Season… Let The Donald be The Donald!
Friday, June 6, 2008
(60th Entry) Adventures in San Miguel
On Monday we did indeed open our candle factory. We spent the day doing the final touches, installing and testing the actual equipment. And then… on Tuesday morning we melted paraffin for the very first time. A very exciting moment!!!
My family sells and now makes “in house” the Santa Rosa Mexican Church Candle… They’re made the traditional way… the paraffin is poured over and over the wick to make a candle that flows… to see examples… go to www.roseannhalldesigns.net
I worked in the corporate world for 11 years and ran a non-profit organization for approximately five years prior to that. The experience of helping and watching my family open a business in Mexico 2 ½ years ago has been the most amazing learning experience in my life. I wish that I could have had this experience prior to going into the corporate world. I have learned more about people, business, factories, production, motivation and most of all I have learned an incredible amount about myself. I hope that I’ve been changed by this experience. I think I have.
My life in San Miguel de Allende Mexico over the past two years has been an incredible adventure. It started because of hurricane Rita in September of 2005 which was coming towards Galveston, TX… but missed and of course we all know the out-come… more devastation to Louisiana. The family business couldn’t get the 18 wheeler full of inventory to Galveston, so over-night practically we moved the business to Mexico.
Our first two years in the business were spent just as they were in Galveston. We bought items and then wholesaled through out the U.S. Six months ago we opened our first factory and this week our second.
Mexico… is a very interesting place! Doing business can be not only interesting, but sometimes very frustrating. When you’re raised in one culture and have learned what to expect… coming to a new culture to do business can be definitely interesting.
For those who have read the blog before, my goals in the Mission Statement are apparent. In our two new factories, I’m making progress on hiring disabled individuals. Of course there are obstacles, but nothing impossible. It just takes time.
I’ve come so far in fulfilling my dreams in the Mission Statement. We’re so close. Times are tough right now and it’s taking everything we have to survive through these economic times. They too shall pass… We’ve invested a lot in the hope, dreams and future of all of our lives. Life is a gamble!
The interesting thing about dreams is that sometimes you do things that might seem impossible, irrational… things that you might never do if it was just for business. I think about Martin Luther King’s speech… “I have a Dream!” How important are your dreams? How far are willing to go to fulfill them?
What I’ve learned these past two and a half years are the things that are important to me… in my life. What do I value? What do I believe in? Who and what are important in my life?
I think I’ve talked in my blog before about my life changing during my adolescent years. I’m beginning to have those qualities back that I had as a child, the one’s that I lost along the way in life.
I talk often about this desire for us to “just go on with life”, not searching or asking questions. I’m beginning to see that for me… I lost “the dream” and I see what happens when we do that. It’s so easy for us to get “hardened” by life… to just go on!
The irony… I’m back in Mexico! I grew up coming to Mexico every summer until the age of 12… adolescents! I came back 2 ½ years ago… there’s something magical for me in Mexico. It goes back to when I was young. There are only two places I go that I have the feeling that I’m at home… Mexico and New York City.
So much more to express…
My family sells and now makes “in house” the Santa Rosa Mexican Church Candle… They’re made the traditional way… the paraffin is poured over and over the wick to make a candle that flows… to see examples… go to www.roseannhalldesigns.net
I worked in the corporate world for 11 years and ran a non-profit organization for approximately five years prior to that. The experience of helping and watching my family open a business in Mexico 2 ½ years ago has been the most amazing learning experience in my life. I wish that I could have had this experience prior to going into the corporate world. I have learned more about people, business, factories, production, motivation and most of all I have learned an incredible amount about myself. I hope that I’ve been changed by this experience. I think I have.
My life in San Miguel de Allende Mexico over the past two years has been an incredible adventure. It started because of hurricane Rita in September of 2005 which was coming towards Galveston, TX… but missed and of course we all know the out-come… more devastation to Louisiana. The family business couldn’t get the 18 wheeler full of inventory to Galveston, so over-night practically we moved the business to Mexico.
Our first two years in the business were spent just as they were in Galveston. We bought items and then wholesaled through out the U.S. Six months ago we opened our first factory and this week our second.
Mexico… is a very interesting place! Doing business can be not only interesting, but sometimes very frustrating. When you’re raised in one culture and have learned what to expect… coming to a new culture to do business can be definitely interesting.
For those who have read the blog before, my goals in the Mission Statement are apparent. In our two new factories, I’m making progress on hiring disabled individuals. Of course there are obstacles, but nothing impossible. It just takes time.
I’ve come so far in fulfilling my dreams in the Mission Statement. We’re so close. Times are tough right now and it’s taking everything we have to survive through these economic times. They too shall pass… We’ve invested a lot in the hope, dreams and future of all of our lives. Life is a gamble!
The interesting thing about dreams is that sometimes you do things that might seem impossible, irrational… things that you might never do if it was just for business. I think about Martin Luther King’s speech… “I have a Dream!” How important are your dreams? How far are willing to go to fulfill them?
What I’ve learned these past two and a half years are the things that are important to me… in my life. What do I value? What do I believe in? Who and what are important in my life?
I think I’ve talked in my blog before about my life changing during my adolescent years. I’m beginning to have those qualities back that I had as a child, the one’s that I lost along the way in life.
I talk often about this desire for us to “just go on with life”, not searching or asking questions. I’m beginning to see that for me… I lost “the dream” and I see what happens when we do that. It’s so easy for us to get “hardened” by life… to just go on!
The irony… I’m back in Mexico! I grew up coming to Mexico every summer until the age of 12… adolescents! I came back 2 ½ years ago… there’s something magical for me in Mexico. It goes back to when I was young. There are only two places I go that I have the feeling that I’m at home… Mexico and New York City.
So much more to express…
Monday, June 2, 2008
(59th Entry) The hiatus is over…
Things have been crazy, but then when isn’t it? If you’re doing things, taking chances, trying to do new things… then life is always going to be crazy.
We open our new candle factory today! OK… the maestro is here along with his wife and two employees. I have four new house guests. If you recall from earlier blog entries this is my second maestro to move to my life. The first was… the grabado maestro, glass carving. Victorio is the candle maestro and is a great person. I have a much better feeling about this experience as opposed to the last.
My family makes the Santa Rosa Mexican Church candle. It’s made by hand… by pouring paraffin over and over the wick, building up layers. The candles are wonderful. They’re kind of like my family and me. You either love them or hate them… but you definitely have an opinion on them.
Also you probably recall from earlier entries my struggle with the factory… the problems, etc. Well… for better or worse I finished it and we’re starting to actually make candles tomorrow.
I’ve missed my blog writing. Things got pretty overwhelming with two factories coming on line within six months of each other… not to mention the U.S. economy… sales are slow… tough! Fortunately we have a loyal following which helps.
If you read the Mission Statement you can see it’s ambitious. It involves every aspect of my life. I wish all of this was happening at an easier time, but it is what it is! Things are beginning to come together… the factories, products, website, employees, etc. We’re hoping to hire 12 more employees in the next month. Some are for the candle factory and others will be for the grabado. Of course my game plan is to follow my Mission Statement… We’re working with some government organizations that are very interested in what we’re trying to accomplish... as with all governmental organizations it takes time and lots of patience.
So… as I said the hiatus is over. My goal is to write several entries a week…
We open our new candle factory today! OK… the maestro is here along with his wife and two employees. I have four new house guests. If you recall from earlier blog entries this is my second maestro to move to my life. The first was… the grabado maestro, glass carving. Victorio is the candle maestro and is a great person. I have a much better feeling about this experience as opposed to the last.
My family makes the Santa Rosa Mexican Church candle. It’s made by hand… by pouring paraffin over and over the wick, building up layers. The candles are wonderful. They’re kind of like my family and me. You either love them or hate them… but you definitely have an opinion on them.
Also you probably recall from earlier entries my struggle with the factory… the problems, etc. Well… for better or worse I finished it and we’re starting to actually make candles tomorrow.
I’ve missed my blog writing. Things got pretty overwhelming with two factories coming on line within six months of each other… not to mention the U.S. economy… sales are slow… tough! Fortunately we have a loyal following which helps.
If you read the Mission Statement you can see it’s ambitious. It involves every aspect of my life. I wish all of this was happening at an easier time, but it is what it is! Things are beginning to come together… the factories, products, website, employees, etc. We’re hoping to hire 12 more employees in the next month. Some are for the candle factory and others will be for the grabado. Of course my game plan is to follow my Mission Statement… We’re working with some government organizations that are very interested in what we’re trying to accomplish... as with all governmental organizations it takes time and lots of patience.
So… as I said the hiatus is over. My goal is to write several entries a week…
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