Ghid de supraviețuire

DSC05312Acest articol este ”altceva” față de cele cu care v-am obișnuit. Dar dacă aveți curiozitatea și răbdarea să-l citiți până la capăt, atunci veți înțelege cât de mult înseamnă pentru mine azi, faptul că urc pe munte. Și veți înțelege – poate – și de ce râd cu gura până la urechi făcându-mi poze în vârf de munte, în pantofi cu toc.

În 1999, pe vremea când am scris acest articol, eram doar piele și os. Boala mă cam pusese la pământ. Abia mutam o cană plină cu ceai de ici colo. S-o ridic la gură să beau din ea? Puteam, cum să nu! Dacă goleam trei sferturi din ceai. Să urc un etaj în casă? Era cât Moldoveanu! Nu spun mai multe despre astea aici că nu este cazul.
Articolul l-am scris direct în limba engleză și niciodată nu l-am tradus în limba română. Nici acum nu sunt înstare să o fac. Chiar și după atâția ani, încă, îmi e greu să o fac…

Povestea e că în 1998 – pe vremea când am fost diagnosticată, eram în Qatar. Căutam pe net cu frenezie informații despre bolile astea ciudate dar la acea oră, netul era la început. Tot ce găseam era în limba engleză și pentru că voiam cu încăpățânare să pricep ce se întâmplă cu mine și refuzam să accept ideea că bolile mele nu au vindecare, mi-am cumpărat dicționare medicale și tratate de imunologie și dă-i cu tradusul.

Apoi am luat legătura cu Selley Ensz din Minnesota care avea un site de câteva pagini, doar în limba engelză. O vreme am corespondat iar apoi m-am hotărât că dacă tot am citit și am tradus atâtea, aș putea să traduc site-ul în limba română – mă gândeam că poate la fel ca mine mai sunt și alți bolnavi disperați care caută asemenea informații în limba română. Apoi l-am rugat pe Áron – pe care îl cunoscusem pe ”mirc” să traducă site-ul în maghiară, iar pe Tudor să îl traducă în germană. Încet încet, au apărut traduceri și în alte limbi.

Așa s-a născut ”SCLERO.ORGthe world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses”. Au pus și românii umărul, ca să fie urnit.

Dar hai să n-o mai lungesc, oricum e lung articolul și vă mulțumesc dacă aveți răbdare să-l citiți până la capăt.

Krista’s Caregiver Story

kristaI have said in my English patient story, we all know how hard it is to cope with the emotional side of an incurable disease. After months of surfing the Internet, stubborn to find a break in the disease, I didn’t give up when I realized that there was nothing to do to cure myself. After many nights of tears, I decided to start the translation of the web pages. I’ve realized that this way I can help myself and I can also help others, both patients and caregivers. The only help that we can give is emotional help. That is all. I was a caregiver and now I am a patient.

Today, I will write my caregiver story for you, because that was what made me start the Romanian translation of this website.

Unfortunately, my father was sick for seven years. He had different problems (work-related illness) with his lungs, his heart, and diabetes. All those years beside him, seeing him suffering, being frustrated about the fact that I could not do anything to help him, I went through all the emotions that come with that: the grief, the sorrow, and all the nights witnessing his tears and prayers to take his life away, because he was suffering so much. It was not a life for him anymore. There was only the oxygen installation to help him.

If scleroderma needs a trigger, then the trigger for me was the night when my father died. I am sure about that. Emotionally, it was too much for me. I loved him more than anything in the world. We were very close, and we had so much in common. He was my first dance and music teacher; my best friend; the one who taught me to love the mountains, the animals, the forest, cooking; laughing; and having a lot of fun. I can say, without making any mistakes, that I am a copy of my father, especially when it comes to talking about a sense of humor (and being stubborn.) He was a very strong person. He taught me to go through life fighting and not to give up! He never did.

IMG_3931With love, and deep respect for my father, I will not give up, no matter how my life is: bad or good. Yes, I must say, he gave me the fighting spirit and he taught me that with a good laugh you can go on, even if that laughter comes along with tears.

On that night when he died, I was there with my mom. It was a very cold February night. It was my mom who called to tell me, “Your father wants to see you and his grandson Alex.” I didn’t wait. I took my son and I went to my parents’ place, our old and beloved house. When I saw the look in his eyes, I knew that he would die that night. Something inside me told me that on that night, I would witness life and death. I had so many tears inside me, but I could not cry in front of him. I knew he would not like that, and my tears would hurt him so much. He was so strong, and I felt that if I cried that night, I would be letting him down! So I let my tears cry inside of me.
Late in the night, sitting beside him, he started having moments when he didn’t realize where he was. At those moments, he started calling with a voice that I always will hear in my mind: “Krista, my dear, please take me home!” He was breaking my heart. I wanted to scream against life, against death, against all the gods in the sky, no matter what their names were. But I could not. I had to be strong. I held his hand and wiped his face with a wet towel. That was all I could do. Behind those tears, I put the screams.

I kept everything inside me. The only thought on my mind in those moments, holding his hand, was my prayer, “God, please release him! If you want someone to suffer, and if someone must suffer for an unknown reason (something that only you know, God), please give me the suffering, but release him! Give me all his pain, but let him go. Take him home, and take care of him. He has had enough!” I never prayed harder and with all my soul than in those moments, for nothing. That was my strongest prayer that I ever said, and it was my scream against something that I feel was very unfair. Everything was inside me.
It was a lot of pressure, but I could not let it out. In those moments when he was coherent, he was telling me jokes. That was my father, the one who used to make jokes about the terrible moments in his life. Sitting on that line, between life and death, I saw him passing away, with his forehead up, with his fighting spirit up. I learned my last lesson from him. My first teacher in my life, who taught me to walk, was now teaching me how to die. Between those two lessons, he taught me how to live, how to go on, how to fight, and never to give up!

geamEarly in the morning, he said that he would go home in the daylight. He only wanted to go home, and get some rest, because he was feeling very tired. At 8:15, outside, the snow was shining, touched by the first sunlight shine, when he quietly passed away. It was like I was frozen inside. Time had stopped, somehow, in me. I had no other reaction. In my mind was: “He is fine now. He finally found his peace, and he is resting now. I must be strong. I must stay beside him, until he is grieved. I have a lot of time to cry, later on. Not now.”

So I didn’t cry, and I didn’t scream. But I felt all the pressure inside of me, localized in one point on my back. It was becoming a physical pain for me. From that moment, that pain never stopped. It is always there, and my condition is getting worse, every day. I have moments when I have many questions: “Did that happen? Did God listen to my prayers, and did He do what I was asking Him to? Did I help my father with that? Am I the one who inherits his suffering?” After all, I had asked for it.
My answer for this is: “Whatever happened, I know I did the right thing.” If someone will tell me one day, “Yes, you are suffering because you agreed to take over all his pains, and you were praying for that!” I would still not feel sorry for what I’ve done. I would do it again today, if I could turn back the hands of time.

For many years, I was feeling the grief that I could not help him. Many times I wanted to give years of my life to help him, if that was the price. My love for him will never die. I know that he is always beside me, with his spirit, and thinking of him, I find my strength to go on. I know that I am doing the right thing. If I’ve taken over his pain, I’ve also taken over his strength. I will do it the way he did it. I will fight, and I will smile.

DSC05199I’m not saying that life is always fair with me, or that I don’t have moments when I feel completely lost or scared. I’m not saying that I don’t have moments when I’m losing the sense of life. All that I am saying is that the only way to go on is to keep on fighting in the first place, with your own self.

Now perhaps you can better understand why I started to translate this website. Why did I start such a difficult job, when it was so hard for me? When you deal with pain, it is hard to do anything else. I am a very logical person, and I was thinking this way: It was not my choice to live a life like this. I did not want to be this way. I felt a lot of pain living beside my father those years. I’m going through a lot of pain now because of my new condition. I must live on with my past and my present.

I do not look that much for the future. I’ve learned to live for today. I do not consider myself lucky that I’ve had the caregiver experience, but I can put both of my experiences together and I can help people see both sides of this kind of story. Or, at least I can try to do that. I am not giving advice; I just want you to know the way I feel. And I’ve learned that when you find a person who feels the same as you, they will help you understand yourself better.

Whether you are a patient or a caregiver, your life has been changed; it is no longer normal. You become more concerned about everyone around you. Emotionally, you become too sensitive. Your way of thinking about life has changed, and nobody can feel things the same as you.

studio2Another lesson that I’ve learned from my father is: “Whatever you do, think about the people around you. Try not to bother them, and go on with what you want to do. Make sure that you don’t hurt anyone, and believe in what you are doing. Believe in yourself.”

Since I’ve had the certitude that I have three or more incurable diseases, my life has changed. I am more concerned about the other people that are suffering. I’m going to do the best that I can to help in every way I can.
My Romanian translation has many pages because I added a lot of articles that I hope will help others dealing emotionally with the situation. We can’t say a lot about medical things, but we can help emotionally. What if I am thinking now that life is unfair with me? Unfair is when someone is suffering like this. But, what is fair? It is not fair for the sun to be covered with clouds! It is not fair that children are living in this world in terrible conditions. It is not fair that there is war around the world. There are so many things that are unfair.

Today, writing this for you (this is my first time writing in English), I realized that when I was a caregiver, I missed the best thing to do for myself, to help myself to understand my father better: I should have read about the emotional changes in a person who is living every day of their life in pain.
My thought for caregivers now is: If you learn about a disease, you can better understand what it is happening with us. On the other hand, we don’t talk every day about the pain. If I start complaining about every pain in my body, who will stay beside me? And probably I would not have time for any other conversation.

Why? Because, it hurts! For five minutes the pain is in my leg, the next five minutes it hurts in my shoulder, and after another five minutes, the pain is somewhere in my kidneys! Try to imagine a person who is complaining all day long, about so many kinds of pain; skin burning or muscles tingling. (personally, I don’t think that I could complain like that!) Learning about it, you would eliminate from the beginning the questions: “Do you have pain now? Are you okay?”

185025_4016411767783_1996809573_nIf I am laughing, it does not mean I am without pain. It just means I am laughing.

If I am sitting at the table at dinner and I start crying when, for others, there is nothing to cry over, it means that my throat refuses to let the food go down, or that it is very painful to swallow.

How can I not cry? What is in my mind at that point? “I am thirty-one years old! If I cannot control this, what else do I expect to do?” It is grief!

Why do I cry when I am walking upstairs in the house? Because I am thinking, “I used to climb mountains! Now, to walk up the stairs one level in my house, it takes all the energy out of me!”

And there are so many other things that I am thinking about:

I used to be a great dancer; I can’t do that anymore.

I used to love to walk into the forest; I can’t do that anymore.

I use to play with children a lot of time; I do not have that energy anymore.

Yes, I am thirty-one years old. I have had to give up a lot of things, but I will never give up fighting with my new condition. This summer, when I go home to Romania, I hope to take a walk in the forest, and in the mountains, and to have a lovely night dancing. I will do it, but not like in the old times.

This Story is Featured in Voices of Scleroderma Volume 1

The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It’s a great way to inform family and friends about scleroderma, too!

dragon1Acum v-ați lămurit cum stă treaba cu tocurile în vârf de munte… poate.

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