Ever since I realised you existed I often wanted to write to you. Really often!! I would grab a pen and a piece of paper, start the opening with “Hi” and stop. “Hi” is not a word with which I should address you,”Hi” is for friends and you are not my friend. I sould not address you with “Hi” since you are the one who entered my body and soul without my permission. How did you find me at all? Were you looking for me? Why me?
Kad si mi u početku dolazila, nisam ni znala da si ti to tu. Držim u naručju moju devojčicu, staru svega četrnaest meseci. Moj odjednom “gumeni” vrat ne drži moju glavu, nego ona kao teška lopta na tanušnom štapu pada na ramena. Ponavljala si to sedam – osam dana, i otišla kao da nisi ni dolazila.
In the beginning I did not know you were approaching. I was holding my foutheen-months-old daugheter in my hands and suddnely my „rubbery“ neck could no longer hold my head which fell on my shoulders like a heavy ball stuck on a tiny stick.
Days, months and years were passing by and my „rubbery neck“ was fogotten completely. After 2011. you decided to visit me again in 2014. Fine! You never asked for a permission to enter my life. Seaside, sand, my children, my husband, a holiday. I bend my head to sip some coffee when a kind of electricity went through my body. You would not let me have my coffee!!! This must be due to a draft, for sure – we Serbs always blame draft for everything. But it went on for days and I told myself that it would pass if I stop bending my head. What a beautiful September in Greece! October arrived also nice, only if it wasn´t for this strange numbness in my face, mouth…uh…it must be a tooth. My dentist said – no tooth problem. Uh. In November, there was so much fog around the city, and in my home, like a mirage. And all double images, as if the things had their faded reflections everywhere, like a mirage. Oh, it was nothing, I was sure!! It must have been an infection of my eyes. Get some eye drops and chloramphenicol…that should help. The whole world had doubled and got into the fog
It was December and alarm clock ringing, a time to take my children to the kindergarten. I got out of a bed and it was like I was stepping onto miniature needless pricking my feet. I looked better, no needles were there. Oh my God what was happening? No, I would get my children to the kindergarten. A little pricking would not kill me. The morning after, I got up and I had a sense of my feet as up as my knees…or not even that. Dear me!! What was happening!! Yes, you can laugh now, an illegal tenant! I got a referral to a vascular surgeon, physiatrist, neurologist etc. A physiatrist, our good neighbour, said that I was not his patient and that it was something serious. Fine, I would go to a neurologist on Monday. An anxiety was overwhelming, was I going to a right specialist? Until Monday, I could sense your progression as high up as to my neck. My skin lost any sense of a touch. It was as if I was rubbing another person´s body after a bath. Everything was in such deep confusion!
Monday finally came, there I was. “Have a seat Danijela, please: You need to do an MRI at Sveti Sava hospital. We see each other after that”
To schedule an MRI. Hillarious! Three-months-long waiting list in the hospital. No thank you! If I was having a tumor it would have become a size of a ball for such a period of time. It was one of those moments when solution could be found in private practice provided one could afford it. Three months! No way! If I was to wait that long I could end up being dead, with my family giving a memorial services o me with flowers growing on my grave. No way!
I was hearing MRI bustling. Did not mind it, was thinking. You followed me as a shadow and I did not know your name, not yet.
- Dear Danijela, I do not know how to tell you…
o Please tell me so I can understand it, with ordinary language. As a girl, during the war in Bosnia, I used to run for the shelter. At that time my brother got leukaemia at the age of eighteen. Subsequently, I gave birth prematurely to a dead girl. Few years later my mother died at the age of forty-four. Do you still consider me too weak to hear what you must tell me?
Danijela, YOU HAVE MULTIPLE SCLEROSIS! I am sorry for what you have lived through! And for bringing up such news to you
A grim on my face.
So, I don´t have a tumour at a size of a ball. What a relief! And sclerosis, you were saying, are those people confined to a wheelchair? – I get a comforting smile and she says the following
Yes, but not all of them. You may not need a wheelchair ever.
We stayed talking with my doctor for a long time and left her with a cheerful goodbye.
Hey waiter, two snaps please – me and my husband drank the snaps bottoms-up in a tavern with red-and-white plaid tablecloth.
A tear rolled down my cheek. My children! What would be with them? My son was waiting for me to take him for a check-up to start Elementary school. “I swear I will go with you to school and to the first-grade ceremony and no illness would stop me” And my little girl, my Dunja. She needs me more every day. Dunja was five, asking me “Mom, are you going to die like your mother did?” I was heart-broken but I replied to her calmly “No, I am not going to die, sweaty. Trust your mother. Nobody is dying from this illness.
My mother died but I wished I could put my head into her lap and cry out my torments because of you, my illegal tenant. I would sit alone during the night trying to figure out how you had arrived. I would think how Nikola and I got our two beautiful children, built our house and had a happy life. And suddenly all dashed away. MS knocked on my door. (Did not knock, broke inside).
MS is said to be an incurable disease but there are medications that can control it preventing further deterioration of brain and body. I will get these medications one day, I want to believe, since neither my children or I deserve to be defined by this illness. And my father, poor man, spent half of his life in tears and now to cry out his old age because of my illness. It is not fair!!!
I try to be cheerful, not depressed making everyone happy each day. I am well, confined, not much disturbed by MS. For now! “I do not care about you, you do not exist for me, go away, from me, from us since my heart is stronger than any of your attacks! I want to live and kiss my children, my husband Nikola, everybody around me. And I am telling you that as of now you are just a dust that I clean. I want to hang up with my friends, smiling into your face showing that you do not exist for me!!!”
My friend, the reader, you should be aware of one fact. Medication exists, for all of us affected by the disease, sorrow and pain.
We should only wait for IT to be imported! JUST that!!
We should only wait for National Health Insurance Fund to approve it! JUST that!!
We should only wait for the President to feel sorry for us! JUST that!!
We should only wait for them to pay for it from our money! JUST that!!
And you, dear friend, whilst you read my story being told with a pain in my heart: plese help, support, understand! I call you my friend because I opened my heart and soul to you! Please bring forward a story about people confined to their homes, abundoned, trying to find their way wishing for just one thing – medication. JUST that!
I wish to carry on, my path lays ahead. I cannot go back. I push forward for the sake of Boki, Milica, Mira, Zema, Vesna, Vladana, Srđan, Tanja, Sanja, Ivana, Tijana, Borka and all mothers, sisters, daughters, sons, brothers, fathers whose names I do not know. I push forward for the right on medications and dignity in life.
DO NOT KILL OUR HOPES!!
PROVIDE MEDICATIONS FOR US NATIONAL HEALTH INSURANCE FUND!!
DO NOT WRECK OUR FAMILIES!!
THIS COUNTRY NEEDS TO WAKE UP, THOUSANDS ARE AFFECTED WITH THIS ILLNESS!!
MEDICATIONS FOR EVERYBODY!!
NOT A LITTLE HERE, NOT A LITTLE THERE. NOT SKIPPING THOSE THAT KEEP QUIET AND HAVE NO FRIENDS OF INFLUENCE TO HELP THEM GET THEIR MEDICATIONS.
While waiting for the medicatins, our only justice, I will tell you a joke on my account an the account of a tenant situated in my head.
A Bosnian woman dies and at the autopsy the pathologist opens her head. He sees just one wire and at the state of shock asks his colleagues to come for consultancy. After deep contemplations they decide to cut the wire to see what will happen. When they cut the wire, the ears fell off the head of a Bosnian woman. And that was it: Nothing else happened. The autopsy report claimed: having delicate situation with the brain of the deceased and after thorough consultancies with best experts we conclude that the brain of a Bosnian woman, although very particular, had corroded. If it had not been for this corrosion, the woman would have been living a very long life. The only prevention for such patients and available therapy is WD40, anti-corrosion spray.
Five years have passed since I received my diagnosis and there is a lot more that I can to add to this story. Imagine what a person diagnosed twenty years ago would write.
Behind every person there is a story. Or is our life with Multiple Sclerosis more like a novel or true serial?
I, Danijela send love to all of you. I am the one facing Multiple Sclerosis bravely and defiantly. My advice for you is to do the same. Look around and you will see that IT cannot surpass what you have. And that is LOVE!