I want to share a letter sent to me by a friend quadriplegic.
Please read it to the end as it reveals some consequences of paralysis that are the reasons why we Cure Girls struggle so much to make Chronic Spinal Cord Injury become curable.
Life goes fast and everyone has the right to live it 100%!
Cure Girl Loredana
A total and permanent disability results in a condition of suffering and discomfort making people change over time; this is an inevitable process, at least for most of those who are involved. Strength, courage, hope are like those friends who remain next to you until things go well, but they get away when fears and worries prevail making you their slave. Spinal cord injury is one of many diseases that, in most cases, brings to a severe and permanent disability; the worst occurs when the damage involves the first cervical vertebrae, causing paralysis in all four limbs.
The dramatic consequence of such a diagnosis is the total dependence on others for all activities of daily living… a drama that affects not only people with disability, but also their family often left alone to face the unexpected situation. So everyone has to play their part, each one has to cope with the pain and anger according to their character and their strength of will. A mother will always try not to look discouraged to her child who needs to be washed, dressed and get up every morning… and a child will see his/her mother strong and relentless so he/she will try to avoid being seen sad or angry. It is not simple, but this is the only way to react, otherwise there is depression with its irreversible consequences. So you choose the most challenging road, living better with your possibilities; and then we should not ever loose hope, maybe time will bring good news, research will progress and will find at least one way to make dependent people able to manage by themselves, allowing them to face the daily problems without that voice echoing obsessively in your head: “what will happen to me if I remain alone”?Meanwhile the days go by, they become months, years… you can achieve some goals: school, graduation, meeting with friends, family celebrations, small trips, but also that trip you would never thought you could make… there are several experiences you can put in the book of beautiful memories. Thanks to this, you can think positive and smile; people will express their respect, affection, some even envy you: “I wish I have just a little bit of your strength…!” they say. And you smile. But then comes the time.
For many years you have been able to manage your paralysis with courage and determination… you left behind all the problems you have had. One day, however, your care (sometimes excessive) in checking up your health, betrayed you… a moment of distraction, and that’s a complication of your disease that made you even more imprisoned. It looked like a small graze (how many you have had before!) but it became an ulcer; you need medication, antibiotic treatments to remove the infections (you risk a sepsis!)… and worst of all, you have to stay in bed nearly all day long. Yes, that’s right, you can not stand in your wheelchair! You were expecting a change in your condition, and after 24 years here it is! Being ironic doesn’t help you feeling less dejected, does it? But even this time you don’t want to give in, you are so stubborn! But why those panic attacks? What makes you scared? There is nothing mysterious about it… it is that until then you had not realized how it was unbearable not being independent. Now that you need more assistance, you realize that you can not rely on your parents forever, and you can not afford a professional care at least; you try every way to avoid foreign caregivers (just pronouncing these words makes you sad). And you had found someone who turned out to be the best solution… until you were told: “I can’t continue”. So that’s back that obsession, now it dwells in your head… “Who can I rely on as a person with a severe disability in order to assert my right of being independent from my parents”? The loss of autonomy is the main problem for a quadriplegic… the anguish to be depend forever from others can be so frustrating as to overshadow the disease itself. But there is something more… Since you became paralyzed, you have seen people live the life you could only imagine. Your paralysis occurred when you were not a teenager yet… you saw your friends falling in love, walking with their boyfriend holding hands, going on vacation with him… they invited you to their wedding, you saw them overjoyed with their baby in their arms. You envied them, and felt guilty about it… envy makes you feel a bad person. But you could not help feeling that way… you just wanted to be happy like them… and unfortunately what would have made you happy is what your friends have had. But how to confess that weakness without feeling ashamed of? The dilemma “whether to talk about it or not” has always tortured you… and while you were torturing you kept on smiling, and while you were smiling you wondered if someone might have noticed the mask you were forced to wear. The goals achieved, the fulfillment of some dreams… these things compensated for a while all the missed experiences along the path of your life. Suddenly you find yourself with no opportunities. After so many years, there you are without a way out that can continue to compensate what you have always missed: the experiences which make you realize that you are growing, you are no longer tied to the umbilical cord, you are independent. Experiences where you are at the center of the world for someone, someone special who looks at you like no one else can do… the experiences of those hugs, kisses, caresses… the walk in the mountains on a cool August morning… the waiting for the sunrise on the beach… walking hand in hand along the shore of a calm sea… Your total paralysis prevented you living these wonderful moments with that special person. You can not count the nights spent crying in silence because of this… but you had to accept the reality to not going crazy. And the grim reality is that a paralyzed body is not attractive, and the inner beauty and unconditional love are just hypocrisy. There was a time when hope was a great open door, through which entered a bright light… but as time was going by you saw the door closing slowly and the light becoming more and more dim, narrow, until it disappeared behind the door. The faint ray that now seeps through the keyhole is the only sign that makes you realize that the light is still out there… but you need someone or something to reopen the door to start to hope again.