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Questions You Might Be Thinking About

1. Why should I keep trying?
2. Will I ever walk again?
3. Am I disabled now?
4. Why me?
5. Why do people always want to know what happened to me?
6. How do I move on?
7. Am I still worthy of love?
8. Am I still desirable?
9. Can a woman with SCI have a baby?
10. Why is penetration still important if I can't feel it during sex (for women)?
11. Why won't God answer my prayers?
12. Why can't people understand my pain?
13. Don't I have a right to grieve?
14. Why can't some people move past SCI emotionally?
15. What if my family can't cope with my SCI?

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Why should I keep trying?

What have you got to lose?

Wallowing in your bed feeling sorry for yourself won't get you anywhere. It's lonely and depressing. Listen, no one owes you anything. If you don't want to try, who am I to tell you that you have to? Just know this, if you stop trying than you have no one but yourself to blame for the misery your life will become. You can't expect everyone to join your pity party or acknowledge your bad attitude by giving it attention. There are better things to do.

You were not put on this Earth to simply exist. I don't know what the circumstances of your injury are, or how difficult each day is to get through for you, but I do know that you have the power to choose how you approach the rest of your life.

Keep trying because it gives you a reason to open your eyes in the morning. Keep trying because it gives you something to dream about at night. Keep trying because others love you and need you to. Keep trying because there is nothing more satisfying than hard work that puts you in control of your life.

Above all, you should keep trying because it's the only way your life can get better.

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Will I ever walk again?

What if you don't?

Wondering whether or not you will ever walk again is healthy, as long as you do not let it monopolize your thoughts or postpone the healing process. Scientists are busily searching for the solution to put you back on your feet again, but until that wonderful day arrives you have a life to live. Walking again is the best case scenario, and most likely uppermost in your mind, but perhaps the more relevant and pressing question should be “What if I don’t walk again?” 

We already know there is no cure for human spinal cord injuries right now. Accepting that as your current reality can be the catalyst that opens your mind and helps you plan what your next steps should be. Acceptance is a powerful action.  It does not represent giving up or the end of something, as most people assume.  I believe it is actually a beginning.  Through acceptance of the undeniable fact that a spinal cord injury has changed your life, you can begin to regroup and understand yourself. Acceptance allows you to stop obsessing about the past and what you can no longer do, so you can begin to experiment with the things you can do. Only then will you be free to explore the things you want to do. Understanding your limitations is half the battle toward overcoming them. The other half is having the desire to challenge those limitations.

Time does not stand still. You can always change the path your life has taken if a cure is found, but you will never get back the time you put your life on hold waiting for it to happen.  I have seen people dedicate their lives to physical therapy in order to keep their bodies as ready as possible for the day the cure is found.  That is not healthy.  Physical therapy, or working out, should be a part of your life; it should not be your life. Even fitness trainers and athletes take time to enjoy other sources of entertainment or challenges to break up the monotony of daily routines.  It is a necessary part of replenishing ourselves.  No one can ever achieve true fulfillment as a human being if they are one-dimensional. We were given five senses for a reason.  To touch and be touched; to smell, hear and see the world around us, and to taste both bitter and sweet experiences.  Each of these senses is as vital to our happiness as the very air we breathe. That is why one sense will sharpen when another is damaged.  If you willfully ignore nurturing any one of them, the hole it leaves can be felt right at the very core of self.  Call it loneliness, dissatisfaction, depression or some other name; you will feel it.

Talk about a cure for spinal cord injuries has been ongoing since long before I sustained my own injury in 1980, but more than a quarter of a century later I’m still waiting for the special announcement on the six o’clock news that I should pick up the phone and make an appointment with a neurosurgeon. I don’t know if you will ever walk again, but I have come to terms with the fact that I probably never will.  Researchers are getting closer to finding a cure for paralysis, but I have been a quadriplegic for most of my life. My bones have become brittle from lack of weight bearing, and the natural effects of aging have recently introduced osteoporosis into my medical history.  My muscles have atrophied, and scoliosis has done a number on the once straight line of my back.  The very thought of my standing brings to mind an image that doesn’t appeal to me at all, more caricature of the feminine form than the sexy diva I look like in my mind’s eye!

That does not mean you should give up the idea that you will walk again.  I willingly gave up the idea of literally standing on my own two feet many years ago, but never the hope. When hope is gone, there is nothing to get up in the morning for.  Instead, I chose to learn how to stand on my own through independence, which has nothing to do with being on your feet! I realized that physical therapy was important to my overall health, but focusing my life around and preparing my body for the day a cure was found took too much energy and time that I wanted to spend on living my life.  Obsessing about the cure has never appealed to me because whether or not it was found was not within my power to control.  I left the work of finding a cure to the scientists and went on with the business of making something out of my life for me. Can you imagine how much time I would have wasted waiting for a cure to begin my life again instead of exploring what I was capable of achieving with SCI on my own?  I would still be waiting, nearly three decades of missed opportunities! I would not have gone to college or moved into my own apartment. I would never have had the courage to accept my first job or experience my first kiss…and stuff.  More importantly, I would never have found the inner peace that I enjoy most of the time about how SCI has affected my life.

I’m not hypocritical.  I admit that my paralysis can get under my skin at times, but those moments are fleeting and do not prevent me from meeting my day-to-day responsibilities.  I’ve built a life with people I love and things I love doing that gives me a reason to shake off the hurt I sometimes feel because of my SCI.  I keep myself busy, so there is little time to wallow in self-pity.  In fact, I believe the lack of some productive activity is the greatest enemy of those with SCI.  When people don’t have a reason to get up and out of bed, they develop a lack of interest in the world around them that slowly begins draining the most important source of energy out of them: purpose.  They are not invested in anything, including their own lives, so there is no driving sense of urgency to do anything.  Each day is much the same as the one before it, and soon the pattern is too routine to break out of.  Paralysis does not destroy lives, but apathy does.  I don’t think this idea is a new one, nor do I think it only relates to those with paralysis. 

Personal value is not found in the soles of our feet, but in the heart, mind and spirit.  More progress toward the cure has been made in the new millennium than ever before, especially after Christopher Reeve sustained his cervical injury and focused the national spotlight on life with SCI.  Although research to cure SCI was going on long before Superman found his kryptonite, few can argue that the attention his injury brought to the issue provided the catalyst researchers needed to light a fire under the public to support their work and get politicians interested.  His injury alone did not inspire the attention researchers needed.  Chris and his wife Dana dedicated their lives to raising funds and awareness for the affects of SCI. Chris became a popular and much–loved advocate, a living example of why a cure is so desperately needed, but he also took time out from his quest to support research for a cure to do the things he loved to do. He continued to act and direct movies because he understood that his spinal cord injury was only a part of who he was. First and foremost Chris was a man, a husband, a father, a brother and an actor. Whether or not he walked again changed none of those things, and he was apparently wise enough to realize that for himself.  I imagine the network of friends that rallied around him and his loving, supportive family was essential to that knowledge.  He was a lucky man.  Few others in his position have the luxury of such knowledge, and fewer still are able to accept such gifts when they are presented because the fear of being rejected is too great.  For some reason, people with spinal cord injuries think they have less to offer in a seated position than they do in a standing position. It doesn’t seem to matter if the injured individual is on a respirator from a cervical break or a low-level paraplegic; SCI has the power to strip the human spirit to its most vulnerable level.  I suppose that is why so many people cling to the promise of a cure, hoping to someday become the person they remember being before SCI changed their lives so thoroughly.

Exciting breakthroughs in medical treatments offer newly injured SCI patients the chance to reduce the severity of damage to the cord, while innovations in technology offer people living with SCI incredible alternatives in assistive technology that promote independence. Advances in stem cell research have blown me away, particularly when I watch a lab rat that was once a paraplegic run across his cage on all four legs without pause.  Although that experiment is a far cry from a human being executing the same level of success, it is evidence that damaged nerves once thought irreparable can regenerate under the right circumstances. That is wonderful news, but this progress has not been perfected enough to call itself a cure.  There is still much work to be done, but take heart that scientists are closer than ever to making the dreams of thousands of people living with SCI come true. In the meantime, keep working toward your goals that do not depend on whether or not you walk again. There is much you can accomplish and enjoy that will make the cure something that enhances your life instead of something that starts your life anew.

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Am I disabled now?

I don’t know, are you? 

I learned long ago that whether or not a person is disabled is not for others to determine.  It starts with one’s own opinion of self.  Society has categorized us as disabled because we have a spinal cord injury, but that does not mean we have to identify ourselves that way, as well. 

According to the dictionary, being disabled is defined as a “disadvantage or deficiency, especially a mental or physical impairment that interferes with or prevents normal achievement in a particular area.” Is that how you see your spinal cord injury? Is that how you see yourself? Do you think you are dis-abled? If the answer is yes, then you have a lot of work to do to get that idea out of your head and into the garbage where it belongs. If the answer is no, then let me be the first to shake your hand and say that you also have a lot of work to do because much of the general population thinks you are.  It boggles the mind, but someone thought they had the right to place an entire population of individuals into a confining box called disability, which by its very definition predicts that the people in that group will not amount to much! Why should any of us accept that definition as truth? I did it for a while because I didn’t know any better, but I am here to tell you that someone has to rethink how they reference people with spinal cord injuries.

Changing public perception about what someone with SCI can achieve starts with me and you. We have to believe that the definition is wrong. I know how hard it is in the beginning to believe that. Everything has changed. The life you once knew may no longer be possible in the purest sense, but you can still make life worth living by building a new life with new ways of doing things. The most “disabling” thing about spinal cord injury is the fear it creates within you about not being “enough” or “worthy” anymore that prevents you from doing that. Second to that is allowing the negative opinions of others to influence how you see yourself.

A spinal cord injury happened to you, it does not have to define you unless you let it. You can play the victim and cower beneath the starched white sheets of your hospital bed, or you can throw the covers back and put some color back into your life. Sure, you are probably going to need help with actually throwing those covers back— some more than others. The most important thing is that you are able to throw the covers back mentally. Getting out of bed doesn’t start with the physical act of moving your body from one place to another; it starts much sooner than that. It starts with the desire to do so.

You don’t have to be disabled. Achieving independence after injury can be an arduous journey, one that takes time and vision. There is much to learn and adapt to, but you are able to do it. If you understand that independence can be achieved in varying degrees (depending our where your injury is) then that’s a huge step toward meeting your goal. You may never possess the level of independence you once had, but if you can keep yourself from obsessing about “what could have been,” the independence you do regain will be so much more valuable because of the work you put in to it.

Above all, never relinquish the independence that lives within your mind. Maintaining independent thought will help you ensure that your life takes the path you want it to take, not what road others think you should travel. It can also prevent you from falling prey to the low expectations some people have regarding what you will actually do with your life. People with spinal cord injuries alone are simply sitting down. They can still be extremely productive members of their communities, especially in today’s high-tech society.

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Why me?

Why not you? is a more appropriate question in my opinion.

The mournful cry of “why me?” is a popular mantra for many of us, despite the fact that it’s a question that rarely has a satisfactory answer. I mean, really, have you ever thought about that question after you’ve asked it? Should someone less worthy than you have been paralyzed instead? Maybe you think you’re being unfairly punished by a vengeful omnipotent being? I fell into that frame of mind for awhile. When I was first injured, I would half-seriously argue that my paralysis was an act of Geisha revenge. Shortly before I broke my neck, I was dusting the knick-knacks on my mother’s mantle when I made the mistake of tossing the fragile china doll onto a nearby chair. Her dainty neck snapped in two, but I thought I had made amends with a skillful drop or two of crazy glue. She looked as good as new to me. My neck suffered a similar fate weeks later.  Was it revenge?   Fate?  Coincidence?  What do you believe?   How you answer says a lot about you and your attitude toward life. 

Those with a victim attitude will choose revenge as the answer to my episode with the Geisha.  They generally hide behind the role of martyr as life tragically abuses them with things that are always being done to them through no fault of their own.  They beat their chests and cry “do you think I want to be this way?” when others challenge them to move on or stop feeling sorry for themselves.  It’s not their fault that they have to live their life from the seat of a wheelchair, a fact they never let themselves or those around them forget.  They use the “unfairness” of the situation and the emotional impact it caused—not only to themselves but to those who love them—to avoid confronting it, keeping family and friends who would demand the hard work it takes to move on at a distance through guilt.  Although I am not proud of it, I found it very easy to manipulate the ones who loved me with guilt when I did not want to do something I knew I should do.  I played the victim for a long time until my sister got tired of it and gave me a good swift kick in the ass. 

Tough love is a good thing but something that is difficult to swallow when you’re the one choking on it.  No one ever deals with it well because tough love forces the individual getting it to leave a comfort zone, and people rarely want to let go of those. In fact, tough love is no easier to deliver than it is to receive. Family and friends often feel terribly guilty for the anger or resentment they feel when the injured party stops trying. They should not. Empathy for what someone is going through is a good thing, but allowing sympathy to prevent one from doing the hard work involved in communicating uncomfortable topics with someone who needs a reality check can be harmful to everyone involved. It's easier to stay quiet, so they cling to the comfort zone of inaction to avoid being the bad guy and enable the person with SCI to continue on a path of self-destruction.  It becomes a vicious circle that only stops when someone finds the courage to say “enough.” 

Today I thank my lucky stars for the courage my sister had to take me to task for being so unwilling to try anything I thought was too difficult after injury, but that wasn’t the case when she first challenged me. I had given up. My attitude was poor. I was emotionally and physically sluggish. Finally, she and I had a terrible argument in my hospital room that is still painful to remember to this day. Sometimes I can still see the shock on her face as I spewed all the venom that was poisoning my spirit and turning me into a bitter, spiteful person. At the time, I couldn’t believe my big sister, my idol, could be so cruel to my poor, pathetic, paralyzed self.  I hated her, and I wanted to hurt her the way I was hurting when she dared to say that I was not trying. It wasn't until she left in tears that I began to wonder whether or not there was any validity to the things she said to me during our argument. Only then did doubts begin to creep into my mind about the way I was behaving and thoughts of what my life would be like without her in it began threatening my world.

The argument with my sister was a reality check that helped me realize I could not beat paralysis on my own and that perhaps my attitude needed adjusting. I didn't know how to find the courage to fight the consequences of my spinal cord injury for myself, but I found a way to deal with the fear it created within me for my family. I did not know how courageous my sister was that day, or how much I needed her to be, until years later. Hindsight usually opens a person’s eyes to the value of tough love.  You just have to get to a point where you can look back and see it; that’s the tricky part.

People who tend to be lazy choose fate as the explanation for my encounter with the Geisha. They are passengers on the journey of life instead of drivers because they believe nothing they do makes a difference anyway. They’re apt to think “What will be, will be.”  Those are five words that should never be strung together because the sentence they create benefits no one, a waste of breath that frees the individual saying it from taking responsibility for actively doing something with his or her life. It’s a self-directed, lifelong pass to do nothing, a negative attitude that I have seen many with and without spinal cord injuries clutch self-righteously to justify their own apathy.  If everything we do is fated to happen, then why do we make any decisions at all?  Are we puppets dangling on the strings of an omnipotent marionette, without free will or the ability to think on our own? “What will be, will be” believers simply use the phrase as an excuse not to do the hard work in the game of life that takes an individual from warming the bench on the sidelines to center field as a key player. After all, if they were meant to be a key player someone should have come to them and told them about it so they could take their rightful place instead of earning it with sweat and hard work. These people won't do a thing for themselves to improve their situation because they like to believe nothing they do will make a difference anyway. In this frame of mind, the injured person can allow themselves to do nothing without personal penalty or a sense of guilt. It's all hogwash! None of us were fated to be paralyzed. I don't know about you, but my injury happened because I was careless of pool safety and argumentative with a schoolmate.  He pushed me. I fell. He didn't set out to paralyzed me, nor was there a pre-determined plan that I would be paralyzed by the end of the day when I left for the pool party that afternoon. It simply happened. It really sucks, but there you have it. And don't for one minute think that what happened to you, whatever the circumstances were, was your destiny either. Things happen to us in our lives. Sometimes what happens to us isn’t very nice, but each of us has the power to take what happens to us and learn from it.

Those who believe what happened with the Geisha figurine was a coincidence tend to believe that they are in control of their lives. It is a positive attitude that allows them to shake off whatever negative things happened yesterday to see how many positive things they can accomplish today, learning from the mistakes they made instead of cowering from them. They are not ruled by the actions of others, nor are they willing to believe that they have no power over what direction their lives can take at any given moment. The circumstances of their injury are important to them, but their lives are not ruled by them.

Life isn't out to get us. My episode with the Geisha did not set in motion a plot to destroy my life by some porcelain doll, nor was it a foreshadowing of the destiny I was headed for. Being a victim of some imaginary plot to destroy you and your happiness is nothing more than dark fantasy, so stop blaming others for what has happened to you and get on with the task of living. You have the power of choice, and although you certainly did not choose to sustain a spinal cord injury, you can choose how you are going to live with it.  Once you achieve that state-of-mind, the “why me?” soliloquy might even disappear altogether.  Maybe.

The simple truth is that our bodies are fragile. They bruise. They break. It’s a small miracle that spinal cord injury doesn’t occur more often. Think about the number of cars that speed past you every day, some mindful of safety while others hurdle haphazardly down highways and community neighborhoods. Tons of metal racing toward you at incredible speeds turn a means of transportation into a weapon capable of shattering the human body into irreparable pieces. How many backyard swimming pools have diving boards that don’t meet safety standards and send the diver into shallow waters? How many children ride bicycles without helmets, or bounce on backyard trampolines without safety nets because parents think the added expense is unnecessary or too great? I could go on and on, but the point is that people take risks every day. Sometimes those risks have consequences, and each of us has to be prepared to deal with those consequences when they come home to roost—no matter whose fault it is.

I am aware of the outrage this idea probably sparks within the heart of those who feel they have absolutely no responsibility for what happened to them. I’m talking about the person who was minding their own business when he or she was broadsided by a drunk driver and the person who was shot in the back by a nameless thug who thought what someone had in their pocket was worth more than that person’s right to life. I’m talking about the hardworking man or woman who is injured on the job while trying to provide for a family and the people who were injured because they were in the wrong place at the wrong time. Coming to terms with spinal cord injury for these people is often more difficult to accomplish because the consequences they are paying were set into motion by someone else.  But can you get past that thought? Do you want to get past it? It’s vital to your sanity and your future that you do.

Until you let go of the “how” you were injured, the “why me” will always keep you tethered to “what could have been.”  Besides, can you really say that obsessing about the how and why of your injury will change what is today?  If the answer is no, then let it go.  I am not trying to make it sound like a simple thing to do, nor am I implying that you should forget completely the circumstances that brought you to this stage in your life. What I am saying is that you have to make a choice. You can be a survivor of a car crash, a gun shooting, an accident or whatever phrase that fits for the rest of your life or you can be someone who moved on. They are not the same thing. Referencing yourself as a survivor of whatever it is that injured you keeps you connected to the negative memories of that day, but if you can set yourself free from the how and why then you can look back on them when the need arises without the pain. You can stop describing your injury with phrases like “the tragic day my life changed forever,” and “the day I lost everything.” 

I used those phrases to describe my own situation during the first few yeas too many times to count, but I’m not sure if I actually felt that way or if it just appealed to the drama queen in me. If you surf the web, those phrases and others like them are especially popular among the authors who create personal websites after SCI.  Freedom of speech is a fundamental American right, and I’m sure many with SCI who Google those personal websites find comfort in seeing thoughts similar to their own written down in black and white.  I just wish more people would write about their lives after SCI to inspire instead of commiserate with the rolling wounded.  We feel sorry enough for ourselves once SCI becomes a part of our lives. We don’t need an invitation to someone else’s pity party; we need proof that life goes on after SCI and advice on how to decline future pity parties.  

After nearly 30 years, the “why me” soliloquy rarely plays its annoying whine in my head anymore. When it does, it's generally a result of hard-core PMS and raging hormones. I’ve accepted responsibility for my part in how the injury occurred, which was the result of a pushing and shoving match with a schoolmate on a pool deck. Initially, I tried to blame my circumstances on my classmate completely.  A bit of honest soul searching while growing up with the injury helped me determine a very important truth.  My behavior long before the day I was injured happened was what set into motion many of the events that occurred at the pool party.  The choices I made throughout the school year regarding him, particularly the antagonism we felt toward each other for reasons that are meaningless now, resulted in the fight that ultimately caused my injury. It was unintentional, but more importantly it was preventable if I had made better choices.  I chose to perpetuate the ugly feelings between us when I could have simply walked away. Being able to accept that has allowed me to forgive both foolish children, and the day itself has long since lost its ability to hurt me on any level.  The paralysis, on the other hand, remains a royal pain in the ass on occasion.  

The point is, there's nothing wrong with asking the question “why me” question as long as you understand that no one will ever give you a satisfactory answer. You just need to know what triggers the “why me?” dialogue or unbearable levels of frustration in your head, and not let it get out of control.  When are you most vulnerable?  It’s important to recognize your triggers so you are able to deal with them when they are pulled, or avoid putting yourself in the range of things that create these negative feelings about your situation.  

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Why do people always want to know what happened to me?

Is curiosity a bad thing?

People will always be curious about how you were injured because curiosity is part of human nature.  Asking questions is how we learn things.  If you want people to understand that you are just like they are, you have to be willing to educate others to to that fact. Communicate. Share. You have the power to decide how to describe the circumstances that brought about your paralysis and the way the story unfolds. Be open, not defensive. Teach, don't lecture. Interact, don't hide.

I think discussion about what caused a spinal cord injury is a good thing; it lances the poison and reduces the pain that can overwhelm a person if it’s kept inside. The more you talk about it, the less power it has over you because it loses its importance as a taboo subject that no one dares speak about. 

Family and friends avoid the issue because they think it hurts you or it makes them uncomfortable, so it’s up to you to tell them it’s OK.  And it is OK to talk about, even if it hurts during the first few months or years.  It might not be easy to talk about it initially, but not talking about it right from the beginning magnifies its importance and makes the event scarier and more painful than it has to be. Hold it up to the honest light of day, and you will be amazed by how little power talking about how you were injured will have over you in the future. You’ll also be surprised over how the way you tell the story changes as it gains less importance over the years. It becomes less dramatic and more statement of fact, a sure sign that the day itself has lost the power to hurt you.

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How do I move on?

Take a deep breath, suck it up---and look forward.

Someone once told me a story.  A man was walking on the beach where hundreds of starfish had washed up on shore. He saw a young boy gently pick up a single starfish in his hands and watched him wade into the water to release it beneath the surface.  The man approached the young boy as he saw him run back to the beach and perform the task again.  When he reached the boy, he asked him what he was doing.  The young boy responded that he was “helping starfish.”  The man lifted his arm and gestured toward the hundreds of starfish that were lying on the beach around them and told the boy that he couldn’t possibly help them all before they died.  The young boy just shrugged as he gently released another starfish beneath the water’s surface and turned to the man with a proud smile.  He said, “I just helped that one!”

That’s the way I feel about this website. There are thousands of people living with spinal cord injury, and I can’t help them all. What I can do is reach out to those who feel like they’ve been abandoned on the beach. Although it’s not always readily apparent in our day-to-day lives, I believe that each of us approaches life with some kind of strategy. Our personalities play a huge role in what that strategy entails. Some of us are our own worst enemy and sabotage ourselves before we even begin, like the man in the starfish story who believes the boy can’t make a difference because the need is so great. He wouldn’t think of trying to help because he only sees inevitable failure ahead instead of the possible triumphs and doesn’t want to waste his time. There is no doubt that many of the starfish will die, but that number could have been far greater if the boy had not stepped in to lend a hand. Then there is the young boy who understands that help, no matter how small, always makes a difference on some level. Sometimes the simple act of trying to help someone, especially if that someone is self, is the key element that makes an important difference in how we measure our own value in this world. The boy knew he could not save all the starfish, but he proudly saved those he was able to reach in time. To overcome a spinal cord injury, one must adopt an attitude similar to the boy’s in the starfish story. If you refuse to think you are helpless, you will reach out and try no matter how overwhelming the odds may seem.

A positive attitude is the singular most valuable weapon against adversity.  You cannot achieve anything but misery if you’re not prepared to see the glass half full instead of half empty. What have you got to lose? I have met people with SCI who think their lives are over because they can no longer do things the way they used to.  I’ve seen people become bitter and victimized by “what could have been” until I want to grab their shoulders and shake them in frustration.  I lost a good friend in the prime of his life to six feet of dirt when his broken heart could not heal because his will to live had been broken long before his heart was. He lost his wife, his child and hope because he gave up on himself. Despite their attempts to support him, he embraced what he lost instead of what he had.

How do you move on?  Believe in yourself, learn your rights, and just do it.

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Am I worthy of love?

Do you want to be loved? 

The thought of depending upon others for everything you need can leave a bad taste in your mouth no matter how many loved ones are promising to be there for you, especially if you were living an independent life before injury. Change is one of the most frightening experiences there is, and the changes a spinal cord injury brings are rarely palatable. That doesn’t mean everyone around you should have lie to you or encourage you to continue to deny what is reality. Families and medical staff are the anchors that keep you grounded in truth until you are ready to accept what has happened to you. They watch your performance as you act out your new and unfamiliar role, providing support where and when they can.

Your tears are not the only ones that fall.  Our families are grabbing the tissue box just as much as we are, but it’s easy to forget their pain when we are so immersed in our own.  Your family members and friends absorb your anger and feel your pain. Most of the time, they’re just as unsure as you are about the future. Their lives will change, too, because of the injury you suffered. They, too, will have new roles to play if they continue to be in your life. Some of us play the martyr and tell them to go away, as if being paralyzed makes us unworthy of being loved or worth the extra effort paralysis sometimes brings. If you feel that way, life will not paint a pretty picture for you. Get over that feeling quickly because it is not true.  You are worthy of love.  You have to want it and be willing to love back.

Your life has value unless you choose to devalue it.  Ask yourself this, if someone you loved sustained the injury you did, would you walk away or think them unlovable?  I highly doubt it. Those waiting for you in the wings are wondering where they fit in your life. They may be frightened about the future and concerned about whether or not they can cope with the consequences of your injury, but that doesn’t mean they don’t love you.  That doesn’t make them bad people. They are human, just like you. If the relationships you had before the injury were strong, then I don’t see any reason why they won’t continue to grow in strength after injury. Human interaction is always complex, but communication is the key that can simplify the most complicated situation. TALK to them.

If relationships fail after injury, don’t automatically assume that your paralysis was the catalyst that broke it apart. Explore the reasons why the relationship didn’t work and accept your role in its failure, if there is reason to. If your paralysis was too much for your partner to cope with, ouch. That hurts, but you cannot force someone to do something they are not capable of doing. Keeping a relationship together through guilt is ugly, painful business. No one wins in that situation, and it's actually not a "relationship" at all. There are men and women more than willing to accept your paralysis and love you the way you deserve to be loved.  

If you're having difficulty finding someone, ask yourself why. Are you putting yourself out there? Are you taking risks and participating in social opportunities?  Love doesn't drop in your lap; you have to find it.  As long as you believe you're worth loving, others will too.

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Am I still desirable?

Do you feel desirable?  Do you act desirable? Do you want to be desirable?

Not everyone does after injury, but --once again-- that is a choice.

Before someone else can find you desirable, you must be able to express your desirability. Taking time to care for personal hygiene and eating healthy to either control obesity from lack of exercise or to maintain a healthy body weight demonstrates that you care about you. And if you care enough about yourself to make the effort to strut your stuff, then others are generally intrigued enough to want to know more.

What about attitude? You can wash behind your ears and douse yourself with divine scents until you smell like heaven, but if your attitude stinks -- your desirability takes a nosedive right into the gutter of loneliness. Designer clothes, make-up, aftershave and all the other trappings of the "attractive masses" become useless packaging very quickly when a bad attitude gets in the way.  No one wants to spend time with you when your conversation is focused on bitterness or anger over the injustices in the world, particularly your small piece of it. How boring. How frustrating. How not to be popular! I'm not suggesting that you never share your hurt or disappointment with others, not by any means!  I simply want to suggest that your conversation be about more than life with SCI -- because you are more than an injury and others want to know that part of you, too.

Desirability is not measured by looks alone, although there is much to be said for a good dose of chemistry. People who are fun to be around, and those who enjoy being with other people to share new experiences, are desirable no matter what they look like or what clothes they wear.  Have you ever had a friend or an acquaintance that became more attractive to you the more you learned about them, even though you would have sworn that the individual could never be your type?  That happens because people stop seeing the outside when the inside is so much more interesting to look at.  Think about it.  What do you look like to other people?  Have you done all you can to make yourself desirable on both the inside and the outside?  If you have, then you don't have to wonder if you are desirable because others will be telling you that you are through friendship, flirtation and conversation.

You are desirable when you can laugh at your mistakes, when you can overcome adversity and when you are willing to meet others half-way.  It has very little to do with whether you sit or stand... 

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Can a woman with SCI have a baby?

Yes, barring any internal damage that may have occurred at the time of injury. 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! If you want to have a baby, there is no reason why you should not have a baby and deliver naturally. Autonomic reflexia must be addressed carefully in women with quadriplegia, but it can be managed with the right medical team.

Having said that, be aware of your situation and ground yourself in reality before you make a decision. It's easy to get caught up in the miracle of carrying a child under your heart for nine months, but there is more to having a baby than finding an obstetrician who is familiar with the complications SCI can bring to pregnancy.

Are you ready emotionally? Is your relationship with the father strong? Women with paraplegia will be able to be very active in physically caring for a baby, but a woman with quadriplegia will rely heavily on the father to provide care for both her and the baby-- 24 hours -- every day.  If both of you understand and are ok with that, do your thing! I envy the woman who carries a child. It's something that didn't happen in my life, so I'd love to hear how it all works out.

Good luck!

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Why is penetration still important if I can't feel it during sex ?

Although I am not a sex therapist, I will give my best shot at a few words of advice from a woman’s perspective on this issue. First and foremost, you should not participate in anything that makes you feel shamed, violated or uncomfortable. We are all embarrassed at times by things our partner may want to try, but feeling shy or unsure yet willing to try is much different than allowing yourself to be used in such a way that you feel badly after the experience.

Sex is an incredibly important part of a relationship, and although the actual act of penetration may not seem valid or important to you because of your decreased sensation...it is still a pleasurable and necessary moment for your non-disabled partner. Asking your partner to forgo this part of intimacy can be detrimental to your relationship. It's like asking him not to walk simply because you can't walk beside him...

My suggestion is to find a compromise. Your partner must learn to find out what brings you pleasure by touching you from the waist up, but do not be sidetracked by sensation alone. The visual impact of seeing a lover’s hand touching your leg, kissing your hip, etc. can be very erotic, too. Forget about the moments you can't feel and experience the eroticism of seeing loving or sensual kisses caressing your body.

Teach your partner how and what brings you pleasure. Are you strictly touch or do you like intimate conversation? What if your lover described the incredibly erotic and pleasurable feeling being experienced during penetration? Can you feel less violated and silly if you are experiencing that moment with him? Would hearing him say how it feels while you caress him and he caresses your upper body during penetration help? Loving someone can be translated into intimacy when both partners are willing to give the other person what they need to feel sexually complete -- when they love each other. Sex for the sake of sex is a whole different category!

Relax and let go of your expectations. If you were sexually active before your injury, then you already have an idea what you think you're supposed to feel. Let anything you experienced before paralysis go....start a new chapter. There is no right or wrong here. Don't watch your partner thinking...I should feel this or that. Let yourself FEEL from the inside out for a change.

Open communication is the most important element here. If Your partner is not willing to listen to your needs than he may not be the right person for you. Explain how ultra sensitive the parts you can feel really are and how much you need extended foreplay in those areas before he receives his own pleasure. All in all, both of you need to decide what you mean to each other. What is your relationship built on: love, attraction, friendship, curiosity? Only when you realize the value you bring, or don't bring to each other's lives, will you be able to define what you are and are not willing to do for each other during sex.

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Why won't God answer my prayers?

Are you sure He hasn’t? 

A man in his middle thirties once e-mailed me about his inability to come to terms with his injury after more than four years. He wrote me about how he smiled and said all the right things for the people around him, but that inside he was inconsolable.  He was waiting for the day God would lay hands on him so he could walk again.  Through e-mails, he told me how he was injured and that doctors were amazed he survived the massive internal injuries he sustained in addition to his SCI. I understand the doctors were also amazed by how quickly he recovered physically.

It seems obvious that God had already laid hands upon him twice, but that he was unwilling to see that because the answer God was giving him was not the one he wanted to hear.

 Be sure that you are not ignoring God’s answer to your prayers simply because you do not like the way He answered them. 

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Why can't people understand my pain ?

Do you understand your own pain? 

I believe in grieving for what was lost, but there must be a limit to how long someone is allowed to wallow in that sorrow. My heart tells me that there must be a time limit to how long someone would want to remain in such a low state.  Newly injured individuals are understandably shaken by their new lifestyles, but years of mourning are unproductive and draining for everyone involved.  It gets old.  Living with a spinal cord injury is no one’s idea of a dream come true, but being miserable about it for the rest of one’s life is a preventable living nightmare.

I am not the person to determine how long any one person should be allowed to grieve.  That is the sole responsibility of the individual who is injured. Family and friends can play a role in helping an injured individual decide when the grieving must stop by providing support and compassion, but more importantly by refusing to enable prolonged grieving periods.  Ultimately, it is the injured individual who will decide when they are ready to let go of “what was.”

Perhaps I am making the process of ending the grief over SCI sound easier than it actually is, but belaboring the point is exactly what I do not want to do. I know how hard it is. I have been there. I have seen other people go through it. On some level, many injured individuals may never get over it. There is nothing wrong with that, as long as life is not put on hold because of it. What is most relevant is to reach a point of understanding where SCI does not prevent the injured individual from living a productive existence in their own eyes.

Others may never truly understand your emotional or physical pain. That is something you must come to terms with.  Pain is a powerful inhibitor, so you have to be able to work through it or it will overwhelm you. As long as you understand your pain--what helps and what makes it worse--you can beat it and share it with those who care about you to help ease its burden. 

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Don't I have a right to grieve?

How long do you want to grieve?

Of course you have the right to grieve, but don't blow it out of proportion. You're not dead. You may act dead, but darn it join the living! Crack a smile once or twice and it might get you thinking your situation isn't so bad after all. You need laughter in your life, so don't take yourself so seriously all the time.

Laughter has healing powers, and being able to laugh is the first indicator that things will be all right. Paralysis in itself is not funny, but the things we do to accommodate our paralysis will make you cry if you can’t laugh at the absurdity of them.

When I was about seventeen years-old, my mother and sister put me in a lounge chair in the backyard because I wanted to get a suntan. They lathered me up with coconut-scented tanning oil, which was great for deepening my tan but turned out to be a bad idea when they tried to lift me back into my wheelchair. My mother grabbed me under the knees, and my sister wrapped her forearms around my chest to swing me into the seat. Unfortunately, we were all too slippery from the oil. Every time my sister tried to lift me, her forearms slid across my bare belly and under the bra top of my bikini.  Needless to say, certain parts of my anatomy kept popping out that should never see the light of day, at least not in public! I don’t know what was worse, getting felt-up by my own sister or hanging in mid-air with my tush swinging in the wind and one boob peeking at the horrified next door neighbor from beneath her arm.

What a scene, but it’s one of those precious memories that we laugh about over a cup of coffee today. Even back then, my gut reaction to feel embarrassed was overruled by the side-splitting laughter we shared over the experience.

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Why can't some people get past SCI emotionally?

I believed in the pre-determined stages of anger, denial and so on that bombard the human psyche after SCI for many years; 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.

As adolescence blossomed into womanhood and education began to open my mind to possibilities, I realized that I could think for myself if I wanted to. I did not have to feel or think a certain way just because others thought I would. Don’t get me wrong; most of those emotional stages did occur. What needs to be clarified is that the mind and spirit are unique and cannot—should not— be put into a neat little box with a set of instructions about how they react under duress on the outside. Human behavior can be predicted to a point, and sometimes it can be manipulated by the power of suggestion, but there are no certainties as to how any particular individual will actually respond to the challenges of SCI. 

Each of us has experienced a different life journey that carried us to the day we were injured, with defining moments along the way that shape the way we think and feel.  How and when we react or choose to respond to the injury is often quite different, as well. Personality has been established.  Habits have been formed, both good and bad.  Faith in God, or the very lack of it, is at the core of every thought and action.  After injury, some use their faith to give them strength to meet the challenges ahead. For others, the injury shakes faith and raises questions about God’s existence. Those who have no faith in God at all must rely on their own character, and if I have learned anything in my nearly four decades on this Earth it’s this: people rarely change. A spinal cord injury provides the opportunity for an individual to discover what they are made of. It does not alter what they are made of.

If someone was lazy before injury, chances are rehabilitation will be torture and life won’t be much better. Someone who is driven, ambitious and inspired by life’s challenges will continue to carry that spirit forward from the seated position of a wheelchair. Those who crumble under pressure will find life after SCI unbearable, and those who are at their best when tested by adversity will emerge a stronger person for having had the experience. I’m not saying that people can’t change on some level, just that they rarely change the mechanisms of personality that make them tick. Our character is as much a part of what defines us as our DNA, and it always amazes me that others expect people to miraculously change a fundamental part of self post injury.

Ultimately, the ability to get past SCI with a little emotional baggage vs. a big trunk of emotional junk is dependent upon the character of the person going through it. Maintaining a positive attitude. Making positive choices. Doing the hard work. All three of these factors are important, voluntary things someone who is newly injured must be able to commit to in order to heal emotionally. When they cannot, emotional pain rarely heals.

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What if my family can't cope with my SCI?

My mother and I were at a local drugstore, and I was roaming the aisles in my electric wheelchair browsing the merchandise when a woman walked up to me and told me that she was drawn to my smile.  Her 17-year-old son had recently suffered a spinal cord injury, and he was having difficulty accepting it. She wondered how I was able to smile so brightly and asked what she could do to help her son smile again.

Later that week, the young man and his father came to see me. We sat and talked for a while until the young man asked me if I thought we would ever walk again. I spoke from my heart and told him I did not think so, but that miracles happen every day. I shared my life experiences with him and encouraged him to believe that he could have a meaningful life whether or not he ever walked again. He seemed to listen attentively, but his father became enraged with my advice. He accused me of being bitter and told me that I was poisoning his son’s mind. I was really quite taken aback because no one had ever said such a thing to me before. I was highly respected by friends and thought of as a positive person by most of the people who met me. When the young man’s father started accusing me of filling his son’s head with negative thoughts, I felt my heart constrict. That was not my intention.

After the man left angrily with his son in tow, I sat quietly and thought about our conversation. It had left me shaken and unsure of my right to express my opinion about the importance of moving on vs. preoccupying my time with a cure. Eventually I came to the conclusion that the young man’s father was having more difficulty accepting his son’s paralysis than his son was. I wasn’t being bitter. The young man’s father was simply still in denial over his son’s permanent injury, and that denial was probably a huge factor in his son’s inability to move on. The man aggressively refused to consider the fact that his son might be paralyzed for the rest of his life, and the message that probably sent to his son was that he was not good enough in the condition he was in.  That was 18 years ago, 18 years without a cure being found. I often wonder how that young man and his family are doing, and if his father finally understands the message I was trying to give his family.

When your family can't cope with your injury, the disappointment and hurt will batter your heart and self-esteem until you can forgive them for it. That is no easy task, especially if you are living within the same household. Please understand that their inability to cope is not a reflection of your value as a person. You have a right to make a life for yourself, but in this situation you may need assistance outside the home to find your way. Family should be your greatest source of support. When family members fail to provide that support, life can get very dark.

Don't give up!

Their problems with your injury are something they need to work through. Although it affects you, do not let it destroy you or your confidence in your dreams. Maybe YOU can help THEM learn to cope by showing how much you can accomplish.

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