Susie Cutino Pratt,
RN, BSN, MPS
Having a physical disability as a nurse can be an everyday
struggle. I often speak to student nurses who question, even doubt, their
potential as nurses because of their own physical issues. I
want to empower
more student nurses to find their place in the most rewarding career of a
lifetime— empower them just like my mother empowered me.
“When God created you he did not finish his product. He gave you
problems that sometimes I blame myself for. I often wonder do you curse me for
having you? Are you angry at me?”
“This
may sound strange coming from your mother but I have always carried this
feeling within me. All the years of your growing up, I prayed. We went to so
many different doctors, always looking for the perfect answer for you. But to
no avail, every new method of doing a new procedure we tired. …The problem with
you brought daddy and I together--as close as anyone could be. All we lived for
was for you--to make you stronger health wise and mentally. You grew into a beautiful
young woman with great traits toward people and a lot of heart. School was
never easy for you but you worked at it until you got what you wanted. Your Dad
and I tried talking you out of nursing, feeling it was too hard a life for you,
but you fought us proudly and became a nurse, which was one of the happiest
moments in my life.”
My mother wrote these words in 1996. I only read the title,
“One Incomplete Child,” and put the letter away for another day. Since
then, both my parents passed away. I write about this letter today because it
has more meaning now. While working on a paper for a nursing theory class, “The
Theory of Chronic Sorrow,” my eyes were opened. The theory explains how parents
of children who have a physical or mental disability struggle to cope with loss
of a “perfect child” (Eakes, Burke, Hainsworth, 1998).
My mom struggled all of
her adult life with her loss of the perfect child. I was the child with the
physical disability. She titled her letter “One Incomplete Child,” which
explains her own chronic sorrow she experienced having me. Sadly, we never had
a chance to talk about the letter before she died. I never knew she blamed
herself for my condition. We were so close and yet she never discussed her feelings.
Her feeling of considering me being an incomplete child was so overwhelming
when I read the letter, I cried.
When I was born, my parents were told that I had a congenital
defect called spina bifida. Later, through genetic counseling, I was told my
true diagnosis was caudal regression anomaly, specifically sacral agenesis.
This is a neural tube defect, which prevents the development of a sacrum or
coccyx. Having no sacrum or coccyx caused weakness of my lower extremities. My
mom wrote how hard it was for her and my dad to raise a child with physical
disabilities. I had many physical problems growing up, but the encouragement
and reassurance from the people around me gave me the will to go on.
Besides my parents, nurses gave me lots of encouragement. I
was always in and out of hospitals for one reason or another but the nurses at
the hospital were always compassionate,
supportive and reassuring.
I think this
is the reason I so wanted to become a nurse. To give encouragement, support and
inspiration to others who have physical disabilities. After reading the letter,
I now know how
hard it was for my parents to understand why I pursued a nursing
career.
I never considered
myself “One Incomplete Child”, as my mom wrote, until I went to college. Until
then, I was always part of the “normal” world. A professor at Long Island
University developed a program for students with disabilities… Students had
cerebral palsy, spina bifida and many other disabilities, but each one had the
same goal in mind: to go to college.
When I told a
professor that I wanted to become a nurse, he made an appointment for me to
meet with the director of the nursing department. At the end of the interview,
I was shocked when the director asked me to walk for her. This was well before
the American with Disabilities Act was passed. Apparently, she wanted to see if
I could walk fast enough to help someone in an emergency.
For the first time
in my life, I felt like I was an “incomplete child.” This feeling of
incompleteness made me more determined to become a nurse. It gave me greater
strength and determination to follow my dream. I overcame many obstacles in my
life but each one made me stronger and more confident in my professional
nursing career. This made me even more determined to continue my education and
become a nurse educator.
I’ve been a nurse
for more than 30 years. Over the years, I have held many different positions.
When I interviewed for jobs, management never questioned me about whether or
not I could handle the physical demands of the position. Every opportunity
seemed to open a door for another successful step in my nursing career path.
Currently, I teach practical nursing students, a position I have held for 10
years.
I look back now on
my remarkable career and realize that the most important step was the one I
took some 30 years ago for the director of Long Island University’s Nursing
School.
…………………………………………………………………………………..
Did you take the
first step? Or, are you struggling with taking the first step? Have others thought you were “incomplete”?
Please drop a comment below. Love
to hear from you!
Eakes,
G., Burke, M. & Hainsworth, M. (1998). Middle-range theory of chronic
sorrow. Journal of Nursing Scholarship,
30(2), 179–184.
Read more about Susie Cutino Pratt’s journey in “The Exceptional Nurse: Tales from
the trenches of truly resilient nurses working with disabilities”.
