[ Home ] [ About Kris Ann ] [ Kris Ann's Book ] [ FAQ For ADULT Family & Friends ] [ FAQ For Newly Injured ADULTS ] [ For Women With SCI ] [ For Kids With SCI ] [ SCI Peer Support ] [ You are not alone ] [ Going to Work ] [ Helpful Links ] [ Kids Understanding Disability ] [ Presentations ] [ Contact Kris Ann ]
I have gathered some of the most frequently asked questions people have
brought to my attention over the years about spinal cord injury and how
to cope with it. Although I am not a licensed counselor, I have
taken the time to voice my opinion on the issues they have questioned me
about. The answers below are my thoughts and ideas, based on 26
years of life with SCI--nothing more .
-
Why does a spinal cord injury cause
paralysis?
-
Why do some people walk after a spinal
cord injury and some don't?
-
Can paralyzed people feel their legs?
-
Can paralyzed people date and get married
and have sex?
-
Can paralyzed people have babies?
-
Do people make
fun of you?
-
Why am I so
angry?
-
Why is my loved
one so angry with me?
-
Have you ever
wanted to commit suicide?
-
What should I
call a person with a spinal cord injury?
-
Is
there a helpful website to assist me with understanding all the
medical terms I have been hearing? (click here)
Waking up from a spinal cord injury was
the single most terrifying experience I have ever had. I could not move,
and a ventilator was pumping air into my lungs so I couldn’t speak. I
had many questions with no way to voice them, so understanding what was
wrong with my body did not happen for some time. Eventually people told
me that I had injured my spinal cord, but at 12-years-old that did not
tell me much of anything. Hearing that your spinal cord is damaged does
not explain why you can’t feel or move your body when you've never even
heard of a spinal cord before. It does not explain the spinal cord’s
inability to regenerate nerves that died upon injury, nor does it help a
person understand the different levels of paralysis that result
depending on where the injury is located. This knowledge is second
nature to healthcare professionals, but the average individual has
little idea how the body actually works before or after the spinal cord
is damaged.
Understanding how our bodies work and
what a spinal cord injury means in terms of function is the most
critical piece of information you need after you wake up and can't move.
Having a doctor walk in and say “you have a spinal cord injury so now
you are paralyzed” means nothing to the person lying on the bed except
horror. When the doctors told my parents that I would be paralyzed from
the neck down, my mother assumed that all of my organs would eventually
shut down and I would die. What else could she think? She wasn't a
doctor. It was 1980, and spinal cord injuries were an unfamiliar topic
among the general public at that time. She needed him to sit down and
explain what that meant. Instead, he left her imagination to fill in the
details. And what she communicated to the rest of the family was what
she imagined would happen, not the reality of what would happen. It was
a miscommunication that caused fear and anxiety that never had to
happen.
Information is power, and until people
have it they feel powerless. It's not necessary to understand detailed
anatomy, but a basic understanding of how spinal cord works with the
rest of the body is very valuable. For years, I taught children of all
ages about spinal cord injury prevention. During that time, I developed
a description of how the brain and spinal cord work together – and what
happens when the spinal cord is injured – that I think explains the
process in a way everyone can understand. Obviously, there are more
complex definitions and descriptions of how the body works – but it is a
beginning.
Our
bodies house an intricately designed internal communication structure that
we call the Central Nervous System. Its major components are the brain
and the spinal cord, with countless networks of nerves running
throughout the body to connect them to each other.
Think
of the brain as an operator. It is located within the skull and controls
everything from memory, learning, speech, sight, taste and personality
to balance, walking, heartbeat, and so much more. It regulates
everything that happens within our bodies and how we respond to the
external world.
 The
spinal cord is an important nerve that runs down the center of the
entire stack of bones (vertebrae) that make up the area typically called
the backbone. It literally plugs into the brain at the base of the skull
in an area called the brain stem and extends downwards to the base of
the back.
The
brain uses the spinal cord like a telephone line to send messages to the
body to tell it how to function. The spinal cord uses the network of
nerves throughout the body to carry the brain’s commands to the
appropriate places, as well as receive messages from the body to alert
the brain to potential problems or pleasure.
When
the spinal cord is injured, the communication system becomes
disconnected and the body may be unable to either receive messages from
the brain or send messages to the brain because the link is lost.
For
example, if an operator tries to connect a call but the lines are down
between her/him and the target destination then the call cannot be
completed. It doesn’t matter if the operator has made the call many
times before, or that she has the correct information because the link
between them is lost and the target has no idea the operator is trying
to get to them. The
brain and spinal cord can be explained similarly.
A healthy brain can know where and how to send the correct messages to
make a person walk, but if its link to the body (spinal cord) is damaged
then the messages cannot travel to the appropriate places to complete
the process. A body with an injured spinal cord has no idea the brain is
trying to send messages to make it get up and walk.
Unfortunately,
unlike the actual telephone system example, the central nervous system
cannot be repaired. As of 2007, spinal cord injuries cannot be repaired
or “cured”. Great technological advances have been
made in that direction, but there is still much work to be done.
The
severity of paralysis varies with the level of spinal cord injury. The
higher the injury to the spinal cord is, the more severe the
consequences are because it affects significantly more of the
communication system. There are three areas of the spine to consider in
regard to permanent damage: cervical (neck), thoracic (shoulders to
mid-back) and lumbar (lower back).
A
spinal cord injury that takes place in the neck area (cervical injury)
may affect many vital body functions and is the most serious. A high
neck injury can result in death or difficulty breathing independently
and is known as quadriplegia because it affects four limbs.
It can cause paralysis in the legs, bowel and bladder functions,
abdominal muscles, trunk muscles, and arms and hands. A mid-lower level neck
injury can cause paralysis in the legs, bowel and bladder functions,
abdominal muscles, trunk muscles, and partial paralysis of the
arms and hands. These levels of injury result in quadriplegia.
Spinal
cord injuries that take place between the shoulders (thoracic injury)
and the lower back (lumbar injury) result in paraplegia where two
of the limbs are affected. It causes paralysis of the legs, bowel and
bladder functions, abdominal muscles and some lower back muscles.
Do not allow yourself to
be drawn into the media hype that some people are "more
determined" than others or that you can change the consequences of
a spinal cord injury (SCI) simply by willing it.
Permanent paralysis
occurs once the spinal cord is damaged, but paralysis can be prevented
if the injury is solely to the vertebrae. Bone heals, and after an
initial paralysis that's due to spinal cord trauma swelling, the
individual may be able to walk again. This can only happen if the spinal
cord wasn't damaged by such things as broken bone from the surrounding
vertebrae, compressions or deep bruising.
It is very important to
keep someone who may have sustained a back or neck injury still to
prevent movement of a damaged vertebrae that hasn't imposed on the
spinal cord, yet. Immobilizing the individual keeps the spinal column
from shifting and causing further injury. The emergency medical team can
administer treatments that reduce harmful swelling and lessen the
severity of the injury's consequences if the injured person gets medical
attention quickly, but this only works if no significant trauma has been
already done to the spinal cord.
Allowing yourself to believe that if you
try hard enough you will overcome the physical effects of a severed or
severely damaged spinal cord is setting yourself up for failure. If
family and friends are telling you that you're not trying hard enough,
and that's why you are not able to walk on your own after a spinal cord
injury, you need to tell them to shove the medical degree they got from
a cracker jack box back into the popcorn and drop it into the nearest
garbage can.
A good attitude will take you far, but a
healthy attitude will take you farther. Hope must always find balance
with reality. In today's world, a spinal cord injury is a permanent
condition. It's up to you how you handle that, and how hard you try to
pull your life together after injury will be the only time people will
be able to determine if someone is trying harder than you are.
People with spinal cord
injuries may have some degree of sensation in the legs if they have an incomplete
injury. This is an injury that damages the spinal cord but doesn't
sever it, so sensory messages can travel to and from the brain. It usually occurs after compressions, deep bruising or when
pieces of spinal cord are dug out by broken vertebrae.
Complete
spinal cord injuries are less common than incomplete spinal cord
injuries and are a result of a spinal cord that is completely cut in
half. There is absolutely no sensation in the legs under this
circumstance.
DATING:
Dating is simply getting to know another person you find attractive to see if there is any
chemistry between the two of you, so of course dating is possible.
The person who uses a wheelchair might need help getting around or in
and out of cars, but those are things easily taken care of when you’re
genuinely interested in spending time with someone.
There are many things to learn about how a
spinal cord injury affects a person, but the initial few dates should be
dedicated to learning about the individual and not the disability. Once
you begin to care for a person, the personal/private parts of dealing
with a spinal cord injury aren’t as difficult to understand or accept,
and it becomes appropriate to talk about.
The most important part is for both parties to
relax and be themselves. The paralysis can’t nor should it be ignored,
but it must never be obsessed about. If the only thing the two of you
can talk about is the spinal cord injury, then you don’t have enough in common
anyway and should lose each other’s telephone numbers.
 Once a personal/romantic connection is
established, no question about the spinal cord injury should be off limits.
People with spinal cord injuries who get defensive about innocent
questions that relate to their paralysis from the person they are
dating are being unfair to the non-disabled individual. The
non-disabled
person has a right to know what getting involved with a person who has a
spinal cord injury can involve. Be open and honest with each other or
else the blossoming relationship will end before it begins.
People with spinal cord injuries can enjoy busy
social lives like any other person. It is important to remember that the
wheelchair is a part of the individual, so make room in the trunk and
throw it in! Paraplegics can usually transfer themselves from the
wheelchair to the car, but quadriplegics will need much
more help. An accessible van makes all this unnecessary, but not
everyone has one.
Marriage:
If you’ve got a lot of money then
book the reception hall and order the flowers! Unfortunately, most
people with spinal cord injuries are somewhere along the poverty line because
they can't work and afford health insurance at the same time, so they
are often forced to live on a fixed income from the state
in order to
get the healthcare treatment/services they need. People
with spinal cord injuries can get married, but if they are on any kind
of government-funded program, such as Social Security or Medicaid, then it
can get complicated. The person with a spinal cord injury can lose medical insurance, and
the non-disabled person will be responsible for much of their spouse’s
personal care and medical needs.
The government says our country is falling apart because the
nuclear family is on the decline, but I know many couples that were
forced to get a divorce and live together without the benefit of a
marriage license because they couldn’t afford the medical coverage.
It’s something to think about. Love does not conquer all, so don’t
confuse the desire to have a wedding with the nuts and bolts of what a
marriage can mean to the two of you.
Most government-funded programs are full of conditions that
don’t allow people with spinal cord injuries many liberties. Someone with
SCI on social security can’t earn a significant salary without losing home
health care services that help them do their jobs, yet the government
won’t allow them to save more than $2000 in the bank or make
investments so they can reserve enough to pay for their own medical
needs.
Few insurers will give a policy to someone after spinal cord injury if
there wasn't one in place beforehand, and no insurers will pay for the
level of hours some people need in home health care aides.
FORTUNATELY,
some advances are being made to help people with spinal cord injuries
and other disabilities get back to work at a significant salary without
losing medical benefits. It is not the answer to facilitating marriages,
but every bit helps. Check out the Medicaid Buy-In Program and
Medicaid 1619b on the
Helpful
Links page! Above all, don't get discouraged. Research,
learn and write letters to your state and federal legislators to change the things you
feel are unfair.
Most people with spinal cord injuries who need a significant
number of hours for home health care aides or medical care are forced to
give up the idea of marriage because it is simply too costly.
That really ticks me off!
Sex:
Sex is an intimate moment between two people who want to express the
emotional connection they are feeling in a physical way. It’s not
meant to receive points for acrobatic excellence or skill….although
that can make it interesting….but to cement a bond between two people.
It can be serious and intense stimulation of body and emotion, or it can
be playful and full of laughter in experimentation and innocent joy in
one another.
Remember, most people with spinal cord injuries
have some degree of sensation in the parts of their bodies affected by
paralysis because most injuries are incomplete.
It’s even more important to remember that the parts of the body with
reduced or no sensation should still be touched because the vision of a
lover’s hand caressing one’s body can be just as erotic as actually
feeling that touch. The most important thing of all to remember is that
the areas not affected by paralysis tend to be incredibly sensitive, so
pay special attention to those places.
Each person who has a spinal cord injury is
different. The many levels of injury, sensation, and self-esteem all play
important roles in a healthy sex life so you must address each issue
separately. By this time, you should deeply care about each other so
trust your partner. Don’t talk the subject to death by breaking down
every detail of what might possibly go wrong or what the best techniques
might be before you begin. It should happen naturally. Find out what
works or doesn’t work together spontaneously.
Orgasms aren’t always possible for the woman
with a spinal cord injury to achieve [I hear non-disabled women aren’t
always successful either], so don’t let them determine whether the
sexual encounter was successful or not. If it felt good emotionally and
physically for both of you then it was successful. Men who are sexually
intimate with a woman who has a spinal cord injury must be ready to
accept that his partner might not be able to reach orgasm without it
causing harm to his ego, or it can damage the relationship.
Erections aren’t always possible for the man
with a spinal cord injury, so women who are involved in a sexual
relationship with him must be willing to accept that. She can still
enjoy his touch and reach orgasm by other means, and he will enjoy her
touch, passionate words and the intimacy of their shared private
moments.
Sometimes erections are possible, but ejaculation is not. This can bring
a great deal of frustration to both parties, but communicating about the
issue is the best way to work through the problem.
Sex is an important part of a relationship, but
what that entails is up to the two people who are involved. Intimacy
doesn’t necessarily mean intercourse.
Click here
for more information like this.
Can Paralyzed People Have Babies?
Women
who have a spinal cord injury can get pregnant, but they must be
monitored closely to ensure the baby’s development is a healthy one.
The mother may have poor sensation that could conceal fetal distress or
her own health complications. Pregnancy can be difficult for a woman
without a spinal cord injury, so the woman with a spinal cord injury
must take every precaution for both her and her baby’s health.
If a woman with SCI wants to have
children, there is no reason why she should not. The most important
thing is to find an obstetrician who is familiar with the complications
SCI can bring to pregnancy, or one who is open to researching the issue.
Every woman considering pregnancy
should have a copy of the American College
of Obstetricians and Gynecologists recommendations on "Management of
Labor and Delivery for Patients with Spinal Cord Injury" and insist that
her physician read it!
Men with spinal cord injuries can rarely impregnate a woman naturally, so artificial insemination
or some other form of fertilization must be used.
Click here for more information like this.
Do People Make Fun of You?
People
don’t make fun of me the way they used to, but that is because of two
major reasons. The first reason is the advent of the Americans with
Disabilities Act (ADA), and the second reason relates to my own attitude.
The
ADA has done much to help Americans with disabilities enter their
communities, the workforce, and enjoy a degree of equality that was
unheard of before
1990. There is still a great deal of work to be done, but the last 13
years of disability awareness advocacy has definitely brought the public
a better understanding of people with disabilities. It’s no longer
foreign to see someone in a wheelchair rolling through the mall or down
the street, so there is less mockery. Disabled individuals are entering
the workforce and making significant contributions to their communities
because of the ADA’s numerous efforts.
I
used to be ashamed of my disability during the first few years following
my injury. I would keep my head down and tried not to be seen when I was
in public by avoiding busy places with crowds of people. My body
language was very timid and invited pitying looks or ignorant comments.
Eventually, I learned to put my head up and look people in the eye even
if I felt insecure. People gradually stopped pitying me and started
admiring me, and few people dared to make rude comments because my
confident body language let people know it wouldn’t be tolerated.
Today when people stare I don't automatically think it's because of my
wheelchair. I prefer to think it's because they are admiring a "hot
mamma!" :)
Someone you love has been injured. You feel helpless and frightened,
not only because the person you love is facing a life altering or life
threatening circumstance but because there is not much you can do to
make it better. Nothing makes a person angrier than feeling helpless or
out of control.
I
don’t know the circumstances of how the injury occurred, whether it was
something the injured person should or could have done differently or if
it was simply an accident. Generally, when it is the result of
risk-taking behavior, family and friends are frustrated by the injured
individual’s actions and his or her seeming lack of regard for
responsibility. If it was an accident, family and friends become
focused on blaming whatever or whoever caused the injury to avoid
confronting the painful reality they are facing.
It
is OK to feel anger after SCI, but anger is not a healthy emotion when
it consumes your every thought and action. It can help you get through
the most frightening times and inspire you to beat that which has
changed your life so dramatically (SCI) -- but holding on to anger over
something that will not change can become destructive.
The most constructive thing you can do is communicate your anger. Talk
to friends and family, and when appropriate, the injured individual. If
you feel you can’t talk about the anger, then start a journal to express
your thoughts. Whatever you do, do not keep the anger you feel inside.
The person who has been injured must focus on rehabilitation, so any
anger toward that individual that is not caused by her or his lack of
effort to move forward must be put on hold. If your anger is directed
toward the person who was injured, the time to express yourself will
come. That time is certainly not within the first few weeks following
injury. This is where your network of support or journal will be very
helpful.
If
your anger is about the circumstances under which the individual was
injured, a matter of somebody else’s carelessness, then do not distract
your loved one’s rehabilitation period with additional stress. Ranting
about what someone should or should not have done, or how you wish to
avenge the injury is not helpful or healthy for the person trying to
cope with life-long paralysis.
You are angry because you are
frightened. You are angry because your life will change--dramatically.
You are angry because you don't understand why this happened, not just
to your loved one--but why it happened to you. All of this is ok,
and you're not the only one who has felt this way.
It will get better as long as
you communicate and find a way to exchange the anger for something
better eventually...like forgiveness, acceptance, or by making the
decision to not allow anger to destroy you and those you love with its
negative energy.
It
comes as no great surprise that a person who has sustained life altering
paralysis feels a bit angry, but I know it can be quite shocking to
family and friends when that anger is turned on them.
I
used to believe in the pre-determined stages of anger, denial and so on
that bombard the human psyche after SCI; so did my family. It helped me
forgive myself when I was angry or cruel to those trying to help me and
it gave my family an excuse to forgive the way I treated them. Everyone
would just say, “It’s the stage she is in,” as if that were an
acceptable reason for the way I lashed out in my pain. Being in pain
does not give people license to hurt those around them, and loving
someone who is suffering is a poor reason to enable bad behavior.
Each relationship has its own history, and that history will play an
essential role in how the injured individual interacts with family and
friends. My mother’s love is intense and unconditional, and I
(unfortunately) used her feelings for me to manipulate her into doing
what I wanted to do. There were days when I would work with my therapist
and gain momentum in my rehabilitation until the minute my mother walked
through the door. As soon as I saw her, I was tired or couldn’t do
anymore. That would cause an argument between a very protective mama
bear and a physical therapist who was trying to do his job. I liked it
when she was my champion because it made my therapist leave me alone. It
also made me feel good when she defended me.
My
sister came to the hospital every single day during my rehabilitation,
but I treated her badly, too. We have always been close. In fact, I
adore my big sister. She became a prime target for my anger, even when I
knew my anger was wrong. I was angry at her for being healthy and going
on with her life during the times she wasn’t at my bedside because I was
no longer capable of doing the things she was doing. I resented her. I
was jealous of her independence. I wanted her to suffer as much as I
was, and it shamed me that I felt that way.
The point is… the two people in my life who never let me down were the
two people I lashed out hardest at. It was nothing they did. The problem
was within me. What put an end to my anger was their courage to confront
me about my actions and their refusal to allow my poor behavior to
continue.
When an individual refuses to let go of the anger paralysis has sparked,
there’s not much you can do personally. Ultimately, the choice to hold
on to the rage SCI can inspire can only be made by the one who is living
with it. Your love and support can work miracles, but you cannot do it
alone. The person who is injured must be willing to work at building a
future and coming to terms with his or her injury.
Loving someone who is facing a personal adversity can be difficult when
that person is not coping well. Helping someone cope is a positive
thing that needs positive action. Remain strong in your effort to help
them, but do not allow yourself to become his or her victim or a
doormat. Hopefully, they will be able to work through their own anger to
be the person you know they can be. If not, you have a life to live.
They can either share with you…. or choose not to. And if you are
someone who must move forward without the injured individual because of
their inability to move forward, do not feel guilt. The power of choice
is within us all.
No. I
have wanted to give up. I have told God that I was tired and would
love to be with him if he wanted to send for me, but I never actually
tried to end my life.
The
baggage a person carries along with paralysis beats on his/her self
esteem daily. It can eat away at a person until it destroys him or her.
That's why it's so important to have goals that you actively work on
achieving. Dreaming isn't enough. It passes the time but means nothing
in the end if you don't try to do something about them. You have to have
a reason for getting up in the morning to make the day and your life
worthwhile. Suicide is for those who feel their lives are empty, but I
believe it's within everyone's power to find something to live for. You
just have to see past your own needs. My family would be crushed if I
left them so selfishly.
My spinal cord injury destroyed the
perception I had of myself, and it took me years to pick up the pieces
of my broken heart. I went from a confident young girl to a helpless
infant, and the journey back to confidence had everything to do with my
attitude. Whenever I found a roadblock that I couldn’t overcome, it was
because of a bad attitude. Whenever I drove myself to success, it was
because I took the higher road of a positive attitude. My attitude was
often influenced by my family's attitude, as well. I needed them to
believe in me, to encourage me and to understand that I was still a
capable person. Despite the fact that I often lashed out at them during
my first few months following the injury, the fact that they believed in
me remained firmly rooted within the deepest part of me. Without that, I
most likely would have been lost.
What should I call a person with a
spinal cord injury?
Much
is debated about the power of words and that which is 'politically
correct'. Since I sustained my SCI, I've been called disabled, crippled,
physically challenged, differently-abled, handicapped, and a bunch of
other trendy euphemisms too ridiculous to remember.
None of them really
describe who I am, but I understand people's need to label things so I
let the label of the month go in one ear and out the other. Only when
malice colors the label will I take offense. On an average day, I prefer
to be called Kris Ann.
Submit
your question on the FEEDBACK page to have it
answered by Kris Ann.
Web Created and Designed by Kris Ann Piazza
Copyright © 1999 [KrisAnnPiazza.com]. All rights reserved.
|
Kris Ann and
sweetheart Tom