Cleft Advocate - Featured Families - November 2002

One Of This Month's Featured Families!

November 2002

Gerald Degerstedt

Cleft Lip and Palate

Wisconsin

October 2007

Gerald has updated

portions of his

feature story and

added more photos.

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1938 was a very different time...

When I was born on April 22, 1938 many of the things that most people take for granted now were not even thought about at that time. For example back then the doctors did not know what to do with people who had harelips and cleft palates. Back then that was the term for what we

now know correctly as cleft lips and palates. I can remember seeing an older man, remember at that time I was about seven years old, who had nothing done whatever.

I was born the first of three boys in a family in which my father was a very abusive alcoholic who also smoked constantly. I can remember being beaten very often. My brothers and my mother were also beaten.

Here is what the doctors say that I was born with: Complete Cleft Of Left Lip, Incomplete Cleft Of Right Lip, Complete Cleft Of Left Alveolar Process, Complete Cleft Of Left Primary Palate, Complete Cleft Of Hard And Soft Palates, Mandibular Hypoplasia, and Ptosis Of Left Upper

Eyelid.

Growing up in a small town where my father was known as the town drunk was no fun to say the least. Remember that I also had a cleft lip and palate and that I was made fun of because of my handicap. Early in my life I was in the hospital almost every summer and that was not fun ether.

I have always been relatively small and because of that I have been taken advantage of. In school when I younger my classmates would make fun of me because I did not look like the others or talk right. That also hurt much.

Click here to see a complete list of my surgeries and other medical information.

All through school I had problems both hearing and keeping up with the other people in my class because of missing much time due to surgery. It was not until the fourth grade that the teacher noticed that I could not hear.

With the medical problems that I had most of the doctors, especially early in my life did not know what to do or how to do it properly. This was because at that time the surgeons were just learning how to do the

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Note: This section copy/pasted directly from Gerald's document.

PART ONE

NAME

Gerald Francis Degerstedt

DATE OF BIRTH

April 22 1938

Barron Wisconsin

11:08 AM CST

NATIONALITY

Swedish

FAMILY

Father GEORGE Born 06-17-1905 Died 12-08-1960

Mother GLADYS Born 11-10-1910 Died 06-30-1981

Myself GERALD Born 04-22-1938 Living

Middle Brother THOMAS Born 03-21-1941 Died 02-13-1974

Youngest Brother JOHN Born 11-21-1944 Living

BORN WITH

Complete Cleft Of Left Lip

Incomplete Cleft Of Right Lip

Complete Cleft Of Left Alveolar Process

Complete Cleft Of Left Primary Palate

Complete Cleft Of Hard And Soft Palates

Mandibular Hyperplasia

Ptosis Of Left Upper Eyelid

SURGERY NUMBERS NAMES AND DATES AND HOSPITALS

(01) First Stage Lip Repair 08-13-1939 @SH

(02) Second Stage Lip Repair 10-19-1939 @SH

(03) Palatoplasty 04-19-1940 @SH

(04) Left Eye Ptosis Surgery 08-24-1945 @WGH

(05) Circumcision 09-17-1945 @WGH

(06) Lip Revision 06-12-1958 @UWH

(07) Pharyngeal Flap 08-15-1958 @UWH

(08) Teeth Extracted 04-26-1963 @MGH

(09) Lip Notch Repaired 05-03-1966 @UWH

(10) Pharyngeal Flap Revision 01-15-1968 @UWH

(11) Right Tympanoplasty To Re Establish Incus Position 05-31-1972 @UWH

(12) Magnum Flap 11-02-1978 @UWHC

(13) Right Cheek Flap 11-02-1978 @UWHC

(14) Upper Eye Lid Surgery 05-30-1979 @UWHC

(15) Correction Of Left Eye Lid Ptosis 05-30-1979 @UWHC

(16) Upper Lip Notch Revision 09-27-1979 @UWHC

(17) Closure Of Oronasal Fistula 09-27-1979 @UWHC

(18) Lip Line Revision 02-07-1980 @UWHC

(19) Nasal Touch Up 02-07-1980 @UWHC

(20) Strut Rhinoplasty 07-09-1980 @UWHC

(21) Chin Augmentation 07-09-1980 @UWHC

(22) Submutal Lipectomy 07-09-1980 @UWHC

(23) Strut Rhinoplasty Revision 01-14-1982 @UWHC

(24) Perforating Keratoplasty Of Left Eye 10-10-1984 @UWHC

(25) Repair Of Left Eye 03-27-1985 @UWHC

(26) Bilateral Vasectomy 03-07-1995 @UWHC

(27) Takedown Of Pharyngeal Flap 04-24-2000 @UWHC

SH = Shiners Hospital, Minneapolis MN

WGH = Wisconsin General Hospital, Madison WI

UWH = University Wisconsin Hospital, Madison WI

MGH = Madison General Hospital, Madison WI

UWHC = University Wisconsin Hospital And Clinics, Madison WI

OTHER MEDICAL PROBLEMS

Mild Sleep Apnea

Post Traumatic Stress Disorder

Seasonal Adjustment Disorder

Bilateral Severe Hearing Loss Without Hearing Aids

Legally Blind In Left Eye 07-17-2007

Intention Tremors

Dysphasia

PART TWO

SCHOOLING

Cameron Public School

Cameron Wisconsin

Graduated May 23 1957

General Educational Requirements

Rice Lake Vocational School

Rice Lake Wisconsin

Graduated May 29 1959

Business Education Program

Madison Business College

Madison Wisconsin

Graduated May 19 1972

Bachelor Of Business Administration - Major In Accounting

LATEST EDUCATION

CD 110 Introduction To CD Fall 1997

CD 200 Introduction To Phonetics Fall 2002

CD 201 Speech Science Fall 1998

CD 202 Normal Aspects Of Hearing Spring 1998

CD 210 Speech And Language Functions Fall 1999

CD 240 Language Development In Children Fall 2000

CD 318 Speech Pathology 11 Spring 1999

CD 424 Manually Coded English 01 Fall 2001

CD 424 Manually Coded English Lab 01 Fall 2001

CD 425 Auditory Rehabilitation Spring 2000

CD 434 Manually Coded English 02 Spring 2002

CD 434 Manually Coded English Lab 02 Spring 2002

CD 440 Child Language Disorders, Assessments Spring 2001

MU 114 Music In Performance 1998 Summer 1998

MU 114 Music In Performance 2000 Summer 2000

MU 114 Music In Performance 2001 Summer 2001

MU 114 Music In Performance 2002 Summer 2002

MU 114 Music In Performance 2003 Spring 2003

MU 114 Music In Performance 2003 Summer 2003

MU 114 Music In Performance 2003 Fall 2003

MU 114 Music In Performance 2004 Spring 2004

MU 114 Music In Performance 2004 Summer 2004

MU 114 Music In Performance 2004 Fall 2004

MU 114 Music In Performance 2005 Spring 2005

MU 114 Music In Performance 2005 Summer 2005

MU 114 Music In Performance 2005 Fall 2005

MU 114 Music In Performance 2006 Spring 2006

MU 114 Music In Performance 2006 Summer 2006

MU 114 Music In Performance 2006 Fall 2006

MU 114 Music In Performance 2007 Spring 2007

AF 740 Adapted Fitness 1 Spring 2007

AF 740 Adapted Fitness 1 Summer 2007

AF 740 Adapted Fitness 1 Fall 2007

PH 261 Intro To Philosophy Of Religion Summer 1999

I am auditing one class each semester including the summer semester and I

am learning more about what the speech pathologist must learn before they

can help me.

PART THREE

TREATMENTS OTHER THAN SURGERY

Speech Therapy

Began about age four until 1983

Hearing Aids

One since 1952

Two since 1997

Glasses

All my life

Dentures

Since 1963

EMPLOYMENT

Librarian

Cameron Village Library

Cameron Wisconsin

1958

Orderly

University Hospitals

Madison Wisconsin

1959 - 1969

No full time permanent employment since graduation from Madison

Business College in 1972.

CONCERNS IN LIFE

As A Child

A desire to "fit in" but did not. This was a concern even before going

to school.

As A Teenager

A desire to "fit in" but still did not. Could not really understand why

people looked at me the way they did. I thought maybe I was really

different. Was shy and confused.

As A Young Adult

A desire to "fit in" but still did not feel comfortable. I also wanted to have

something of my own. A private home to live in. A business of my own.

Financial independence to be able to do what I want.

As A Middle Age Adult

A desire to "fit in" but still could not. I started to deal with some major

problems that still affected my life.

(01) Male-female relationship

(02) Employment problems

(03) Spiritual needs

Right Now

I am going though a reorganization of my basic belief in almost every area

of my life. I am learning how to use Fully Accurately Integrated Thorough

Honesty in all that I think or say or do.

(01) Physical

(02) Sexual

(03) Emotional

(04) Psychological

(05) Mental

(06) Intellectual

(07) Spiritual

When you begin to realize that you have been abused (01) Physically (02) Emotionally

(03) Mentally (04) Intellectually (05) Psychologically and also (06) Spiritually by some

and also other major organizations an groups such as (01) Government (02) Religion

(03) Education) (04) News Media (05) Legal System and what I call the (06) Monetary

System you do began to question everything that you have been taught in your entire

life regarding your thinking and beliefs. I am now beginning to use what I call FAITH

( Fully Accurately Integrated Thorough Honesty ) in all areas of my life and in all that I say or do or think.

PART FOUR

MISCELLANEOUS

When each Conscious Individual person living or born on or after January

First Two Thousand One on earth starts taking total responsibility for his

or her own actions using what I call FAITH or Fully Accurately Integrated

Thorough Honesty, then and only then, will this planet begin to have true

peace and prosperity which we all want but none of us have.

MARRIAGE

Married May 12 1969

Divorced June 23 1975

No children

FEELINGS ABOUT PROFESSIONALS

Physicians

Most have been helpful. Early in my life I did not know what was

going on but later in life I began to take an active part in what was

being done.

Dentists

Early in my life the dentist did not know what to do because they had never

in their life had seen a cleft lip or palate. Later dental work being completed

and I now have complete upper and partial lower dentures. This helped both

my speech and outward appearance.

Social Workers

Less than good experience with these people because I had to many of

them and they had no continuity from worker to worker. I still do not

like them.

Vocational Counselors

Most of them consider themselves as the experts and do not take into

consideration what the person wants. They did however, pay for my

going to Madison Business College.

Peers And Teachers In School

At that time no one truly understood what was going on with myself

because of my family background. Teachers did no t try to teach the

other students what my handicap or disability was.

Speech-Language Pathologists

Most of the benefits came after my most recent round of surgery when

all was completed. The reason for this was the fact that surgery was now

done and I was more motivated and was on a more frequent intense basis.

FAMILY

Father

My father was a very abusive alcoholic and not around much of the

time. He was a chain smoker all of his life.

Mother

My mother did the best she could under the strain that she had. I

could depend on her in a "crisis" situation. My mother drank and

also smoked.

Brothers

They tried to help my at school but then they were both younger than I

was so they were not really able to help much. In later life one of them

smoked and both of them drank.

Myself

I have never drank or smoked in my whole life and do not intend to start now

knowing what it can do to your health and wealth. I consider all drugs harmful

to my health.

GENERAL OBSERVATION

A GENERAL OBSERVATION I HAVE ABOUT THE PROFESSIONALS WHO

HAVE BEEN IN CONTACT WITH ME IS THIS. THERE WAS VERY LITTLE

COORDINATION AMONG MOST OF THEM CONCERNING MY PERSONAL

NEEDS AND DESIRES AND HOW TO DEAL WITH THEM, ESPECIALLY IN

THE EARLY YEARS. EVEN TODAY I DO NOT THINK THAT THERE IS A

CLEFT PALATE TEAM IN MY AREA. AT LEAST IN MY OWN CASE I HAVE

SEEN THEM ALL BUT I WONDER HOW MUCH THEY READ MY MEDICAL

RECORDS BEFORE THEY SEE ME.

GROUPS I AM NOW WITH

AARP American Association Of Retired Persons

ACPF American Cleft Palate Foundation

SABR Society American Baseball Research

CLEFT ADVOCATE Cleft Palate Group

WIDE SMILES Cleft Palate Group

AMERICAN PHILATELIST Stamp Collecting

AMERICAN NUMISMATIST Coin Collecting

HOBBIES

Stamp Collecting United States

Coin Collecting State Quarters

Reading And Research Non Fiction All Types

Here are some web sites that I have found very interesting to myself as I learn more

about life in general.

http://www.geocities.com/Heartland/Estates/3498/gerald.htm MY FRIEND GERALD

http://www.neo-tech.com/advantages/ NEO-TECH ADVANTAGES

http://www.neo-tech.com/golden-helmet/ NEO-TECH GOLDEN HELMET

http://www.neo-tech.com/orientation/ NEO-TECH ORIENTATION

http://www.neo-tech.com/world/ NEO-TECH OUR WORLD AFTER 2001

http://www.cleftadvocate.org/ CLEFT ADVOCATE

Mailto:gfdegerstedt@wisc.edu E-Mail Address

Mail

Gerald F Degerstedt

755 Braxton Place

APT A1004

Madison WI 53715-1495

Telephone Number

1-608-251-7420

surgery needed. I was somewhat of a guinea pig. We did not have access to a cleft team. Each different group worked by themselves and had no coordination among them. What we now have is much better.

In the last ten years I have been involved with many organizations that deal with cleft lips and palates and other craniofacial conditions including Cleft Advocate, About Face, Faces, Wide Smiles, American Cleft Palate Association, and quite a few mailing lists.

I am also auditing classes at the University Of Wisconsin in Madison and finding them very interesting. Click here to see my latest education courses:

I am auditing one class each semester including the summer semester and I am learning more about what the speech pathologist must learn before they can help me.

I right now am going through a personal reorganization of my basic thinking and belief system in almost every area of my life. I am learning how to use Fully Accurately Integrated Thorough Honesty or (FAITH) in all that I think or say or do...(01) Physical (02) Emotional (03) Mental (04) Intellectual (05) Spiritual.

When you begin to realize that you have been abused (01) Physically (02) Emotionally (03) Mentally (04) Intellectually (05) Psychologically and (06) Spiritually by individual people and also by some major organizations such as (01) Government (02) Religion (03) Education (04) Media (05) Legal and what I call the (06) Monetary Systems, you begin to question everything that you have been taught in your life regarding your thinking and beliefs. I am beginning to use FAITH in everything that I say or do or think.

When each conscious individual person living or born on or after January First Two Thousand One on earth starts taking full responsibility for his or her own actions using the FAITH system, then and only then, will this planet begin to have true peace and prosperity which we all want but none of us have.

Part of my reorganization process has included how I think about what is going on in the World System, as I call it. For instance in the word education the root word for that is educate and the root for that word is EDUCE, which means TO DRAW OUT FROM WITHIN, therefore our educational

system is not doing its job by giving the students names and dates and numbers, but they are not teaching the students how to go with-in and find the answers that they need to know in the present time.

I am learning the difference between being religious and being spiritual, between being governed and self governed, I am learning what it means to be self taught.

As an older adult I find that young children are more open to me than older adults because that are so very honest about what they say about me and to me. Today children who have

any kind of a handicap are more comfortable in many ways that I was not. We now have laws that if they are kept will help protect them from many of the things that hurt me the most.

I have in my life been called many things, including a THING. That hurts me very much. I am

beginning now to say to myself that it is not my problem, but it is the problem of the person who says it.

Such advocates as EI and WIC and what is now called a Cleft Team were not available when I was born. Also the computer as we know it was not invented yet so no internet or e-mail for

anyone. My parents were not even with me for some of my earliest surgeries and I was completely alone in a strange place and did not know anyone or what was going on. I get goose bumps just thinking about some of the recent advances in the medical field.

Looking back over my life I must say that it has not been an easy or enjoyable journey but at the same time I have and am continuing to learn many valuable lessons about life and how to live it. Right now, today, 10-02-2002 I find myself struggling with many issues including nerves, stress and tension from some of my very old issues including lack of a restful night sleep which I cannot really remember.

I would truly like an up-to-date Apple Macintosh computer system which would have OSX 2.0 Jaguar at the head. A laser color printer and a color scanner so that I could use some of my creative insight.

I know that my life history is different from those of the latest generation but that just shows that modern technology has improved by leaps and bounds in the last ten years or so.

Right now I am going through a period in my life in which everything seems to be coming to a head. It seems like when I am at the computer labs on campus and I need help I ask for it and the people behind the desk do not want me to. I am working with one person who is trying to find out what resources are available for me to get an up to date computer system. I am also trying to find someone who can help me to learn self hypnosis so that I can work on some of my own problems by going within. I have told all doctors that I will NOT take any form of drugs because I have over my life seen what they do for others. I feel that we have safer methods of treatment for all illnesses physical, mental, emotional, and spiritual.

Write to Gerald at gfdegerstedt@students.wisc.edu.

Gerald's Favorite Links:

http://www.neo-tech.com/advantages/

http://www.neo-tech.com/finalevo/