Mariam Nanobashvili, 32 years old, Tbilisi
”About seven years ago, I fell on the handle of a carved door and was injured. I had a large hematoma on my hand, which was soon absorbed. Time to time the post-traumatic pain returned, though it didn’t bother me much, and moreover, as the doctor said, everything was over.
Two and a half years ago, I was training actively, and while training, at some point I noticed in the mirror that I couldn’t stretch my hand fully. Then I started having strong pains, I couldn’t sleep at night and couldn’t make it stop. I would go from room to room from the pain and fall asleep in the morning. I started researching what it was. Thorough research revealed that there was some tenderness and it also obviously manifested itself physically – my hand was swollen in that area. We also received biopsy results from Germany, it was a cystic outgrowth, but nothing to worry about. So, the oncologist refused to do surgery and because this cystic growth was on a blood vessel, the microsurgeons decided to take care of it. During the surgery, when they opened the growth, on the side of the bone there were non-standard cells. The doctors removed what they could, and from there they started talking about the fact that it was a tumor formation and that amputation would probably be necessary because there was still a large mass very close to the bone. In fact, it was grown in with the bone.
I refused amputation from the beginning. At that moment, everything as a whole was unbelievable for me. I got results from the United States, the John Hopkins Clinic, but like results from Georgia, the exact diagnosis was the same – synovial sarcoma, which means a tumor of the joint fluid. Often, this tumor is post-traumatic and mainly affects athletes, however, statistically, this disease affects two in a million people and I was the ‘’lucky one’’. I started chemotherapy and I found myself lucky again, I was in the 18% whose tumor is resistant to chemotherapy and the treatment had no effect whatsoever. When chemotherapy didn’t work, radical surgery became necessary. Kakha Todua, who is a great surgeon, needed 6 hours for my surgery – the bone segment, the leftover tumor from the first surgery, and also the entire elbow joint had to be removed, plus a part of the arm bone. After that, for three months, I had my hand in a fixator, absolutely dysfunctional, I could only train my fingers and wrist. But from the beginning, they said it was better to use a radical approach and it turned out to play out exactly like that – three months later I started having a fever; we checked, and there were two small bumps on a nerve, on the exact same spot. There was a possibility for the outgrowth to return. But I really hoped I’d survive and still had to try. The third surgery was scheduled and the surgeon warned me to be prepared, that they may not be able to save my hand.
After the third surgery, when I woke up, the nurse asked me if I knew how the surgery went. She asked me in such a way that I understood everything and pointed at my hand – they had amputated it. After the first surgery, I already had an assumption that this would happen and when you do that, it seems easier. It’s a bad comparison, but when they have a bedridden relative and they slowly get used to the fact that he will die, it’s less shock. It’s kind of the same in that you get used to the fact that there is a chance, that you’ll go to this point. Before the surgery, I signed a document that said I agreed to save my life over my hand if needed. It turned out to be ridiculous that those three months when I had my hand in the fixator was more difficult than the life without a hand. In addition, it was very painful, I couldn’t take care of myself independently, since I always needed someone to help me to remove the fixator to wash my hands. That life was very difficult for me and limited my independence. You always depend on someone and that’s not right. Others have their own lives. I couldn’t sleep and I was sitting in bed since this hand should have been fixed. Compared to that, now I feel relieved. When I was taken to the chamber and the doctor came to see me, I jokingly told him not to be upset, but I think life without a hand is a little easier.
I had a moment – shit, it still has happened! – there was that feeling too, but I thought that being alive is more important. If I had an amputation for the second surgery, I would probably have had a much harder time, but in those three months, I realized that It’s not that difficult to live without a hand. Instead, I would survive and continue doing what I wanted with my only remaining hand.
What we don’t talk about
I think we need to talk about cancer and in general, about this diagnosis. I have heard the position that having cancer is not ‘’cool’’. It’s not, for example, syphilis, which can happen to you because of your stupid behavior. It’s cancer, that turns out, just happens to you. There was a moment when I was told not to talk about it. There is this stigma. Why shouldn’t I talk?! When I needed resources and I wanted to read something about this in the Georgian language, I couldn’t find anything. So, I decided to start recording videos by myself.
When you hear about this diagnosis, a psychologist doesn’t work with you, the clinics don’t offer help either. At this time, you are very close to death and no one can help you with that. I went through all this with my own strength and with help from my loved ones. I also managed to find additional money for it and started going to a psychologist. During the chemotherapy, I started to lose hair, and even though I was morally ready and knew it was going to happen, it was still killing me emotionally. Many people need to talk about this because they are going through all of this alone. Yes, we all have friends, but often, these friends aren’t doctors or therapists who know and can tell you what to expect. For example, that my hair roots would hurt for two months and I couldn’t put my head on the pillow, no one told me this. Maybe, for a doctor, it’s such an insignificant part, that he thinks about other, more important things and tries to save your life. But if you talk to someone like you and tells you, that if you put your head on the pillow, you will get a headache, you are somehow ready for it. It’s not easy, but you are no longer shocked by it and it’s very important.
Also, not everyone has a person who will listen. I’m sure it’s very difficult when someone tells you such a story, and even more difficult to reach the right way. No one should feel sorry for you, because you don’t need to look yourself that way. It doesn’t help you with anything. I don’t blame anyone, people have trouble understanding how to act around you. At this point, it’s enough for them to listen to you and tell you – everything is fine and they’re there for you if you need anything. During chemotherapy, you are exhausted, you’re jello, you have no energy, no emotions, you want nothing. It’s not that you don’t want to do anything, but your body is just not listening to you and it’s difficult for people around you to understand. Friends try to cheer you up to support you, they offer going out and having fun because this situation is not familiar to them. However, at this moment it’s just better for you if they sit next to you and just be there because that’s the only thing you can handle.
My family members have been very strong during this time, as strong as you can be during this diagnosis, with your daughter, or with your sister. But you realize that everyone is silently panicking – you look at them, they look at you with a smile and at this time they have panic attacks and they have inner battles. You want to tell them that this will pass and everything will be fine, but they think it’s better not to talk about it. But in fact, it’s better if it’s acknowledged and you don’t see this silent panic around you. I understand that it’s very difficult for them to realize, but this emotion is spreading out… I want to tell everyone to talk to people with this diagnosis and to share their emotions with them.
I think that none of the diagnoses is ”uncool” and I want many people to realize this. I don’t know how this topic can be taboo when spreading information at such times is vitally important. This is something that many should talk about, and first of all doctors should talk about it, not in terms but in common language.
Life with one hand
The most difficult aspect of this diagnosis, in my opinion, is the proximity to death.
It’s not just that someone has died or is dying somewhere in their 80s, it’s very close to you and it’s real. At this time, something loses its meaning or vice versa – something becomes very important and difficult. I no longer have cancer, but the fact that death was so close to you, it pushes you to completely different behaviors. For example, it becomes no longer important, that you have to live fast. You are involved in work, hobbies, seeing friends… It all happens very fast and you can’t get pleasure at this speed. You can’t perceive the relationship with a friend, you lose deep ties and you can’t even have real fun with your hobbies. I always regretted the time, I lived on the clock, and did I actually did anything?! If you ask me what I did rushing up my life until my 30s, I did nothing, I didn’t receive a Nobel Prize and I’ve not invented anything either. I don’t judge anyone, but I know that this whirlpool of life will make us pay.
What life is like with one hand – Maybe it will sound very sarcastic, but as they say, you don’t die of it. If it would have been the right hand, it would be much difficult, because I’m right-handed. But living with only one hand is absolutely possible. When I had a fixator on my hand, I wouldn’t give up and would roll sushi by one hand. Admittedly, it was very funny and I was dirty from head to toe, but I had this idea that I had to do.
Probably, at this time a person’s motivation makes sense. Someone may have given up. People are different. But I find it difficult to understand why you should give up when you’re alive. You survived and now continue to live. Yes, it will be difficult and yes, you’ll struggle a lot, but… for example, I can’t peel potatoes because they roll out from my hand and it turns out it’s impossible to manage it with one hand. But okay, I won’t eat potatoes or if I really wanted to, I would ask someone to peel it for me. Also, I can’t open cans. It’s difficult to stretch the spin. If you think about it, you may not be able to do very basic things, but it’s about how you adapt things to yourself. There are some things that are hard to get used to, for example, I had to learn how to tie shoelaces with one hand, and cut my nails on my feet with one hand. There’s always a solution and everything is convenient. It’s more about how you approach it. Some time ago, very delicious scrambled eggs were scattered all over the kitchen, because I didn’t have another hand to take the pan. Things like this happen and yes, sometimes I get very angry about it. But soon this anger goes away because I realize that I got angry and what’s next? I don’t have this hand… there will be no more scrambled eggs but I can still eat something else.
My humor helped me a lot. As soon as I understood that I had cancer, the first thing I joked about was “я роковая женщина.” When I said this at work, my supervisor looked at me and couldn’t decide whether to laugh or not. Then everyone got used the fact that I like dark humor a lot. In general, I think that anything can be made fun of and this helped me a lot. Not only me but also those around me – when you joke, you help everyone breathe free. If you’re joking about something, it no longer feels dangerous. Somehow, this is how the human brain works. However, I understand that it’s not so easy for everyone. I still have that feeling – when I go to the doctor, I’m afraid he will find something again. I had inflammation of the tendon on my little finger and I got scared that it would come back and I’d have to go through it all over again. Deep down in my heart, there is a lot of fear and it will probably be there for some time. I’m going to have prosthetics in the future. Now, when I think about it, I have to get used to it, to have a hand again.
Society’s attitude to this is mostly very strange. For example, once there was a consultant in the store who asked me, was I able to do house chores with only one hand? She was surprised that I could. Also, I got a weird question by a complete stranger – ‘’Has it been a long time since you only have one hand?’’. I don’t how knowing this could possibly help others. I think when we’re taught from childhood that if a person is in a wheelchair, or doesn’t have a hand, we should not stare at them, etc., with this, our parents are doing something very bad to us. The child should be explained that a person may not have a second leg or hand but is an ordinary person and just something happened to him. Then it will no longer be something unknown, uncertain, or special.
I don’t think that the status of a person with a disability is something shameful or is degrading in any way. Unfortunately, people have this perception. I already knew that some things weren’t easy for people with disabilities in this country, but when you face it yourself, you see more details. For example, when I come back from shopping, holding the elevator button should be much easier. Also, it’s very difficult for me to get on the bus, hold something and take a card out of my wallet at the same time. Unfortunately, our country is not adopted to special needs, at all.
Profession and Hobby
I’m a copywriter by profession and also an off-roader, an amateur photographer, a partisan gardener, a vlogger. In fact, I’m addicted to everything that I’m interested in.
At the age of 13, I went hiking with my mother. Then she found an offroading space and we both got ‘’fever’’ for it. We love mud, impassable places, obstacles. When you look and realize that you can’t pass, but you have to because that’s the main point of it. I’ve been an off-road referee for six years now, and I’m the worst referee. Once, my mother who was the only female participant in the competition took a penalty on my section. For me, justice is the first principle and when I gave her a fine, one person from the audience started arguing with me – she’s the only woman and how could you do that, he said. When I told him that she was my mother, that person turned around and left. We’ve been to competitions in Turkey, and we often go on off-road expeditions. We walk in the woods, we protect the environment. For example, a big iron rope should be tied to a tree to help the car out of the mud, and we, to protect the tree, first put protective tape around the tree and only tie the rope after, so that we won’t damage the tree. There is a golden rule in off-road – nature shouldn’t be harmed. It’s a serious adventure – of a team, a car, self-endurance, and humanity.
We’re not preparing for the rally, which is held for the empowerment of women and it’s also a charity event because we’ll bring some stuff to the people in the village that need i. My mother will be driving and I’ll be the one who shows her the way’’.
Author: Nino Gamisonia
Photo: Nino Baidauri
Translation: Mariam Kajrishvili