(63rd Entry) Continuation of Entry 62…

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….