What happens when you are quadriplegicyou give a voice command but Siri is sleeping right? What happens when you’re a quadriplegic and the bank clerk leans over the document for you to sign? What happens when you’re a quadriplegic and you’re home alone, you and a mosquito? What happens when you’re quadriplegic and have a deadly sense of humor?
The 33-year-old Maria Hatziioannouor otherwise Maria Rollsuploads the last interval to social media video about her life, about the everyday life of a person with quadriplegia, with black – blacker you die – humor. It is not easily digestible material. You laugh because you can’t do otherwise, but you are immediately bitten, it is possible to make fun of her multiple sclerosis; On the other hand, Maria wants us to laugh. The problem is pathological: “I suffer from stiffness and sarcasm”, as he writes in his bio. “Someone wrote to me that I make fun of people with disabilities. He couldn’t believe that a disabled person could make a joke.” However, most of the messages are positive. Many come from her fellow patients. “Someone told me “I laughed today and I really needed it” or another “I suffer from severe depression and it’s been a long time since I laughed”. This makes me very happy.”
I found her at her house – where else. It rarely comes out, the last time was two weeks ago. Her mother and caregiver does not have the strength to lift her out of bed and sit her down wheelchair. Certainly not to maneuver the wheelchair on the rough sidewalks of Neapolis Exarcheion where they live. Maria spends entire days at home, specifically in her bedroom that does not see the sky, with the only company she uses is her cell phone voice commands. As if that wasn’t enough, I’m also the one asking her to remember the moment when the disease first knocked on her door.
The diagnosis
“It was ’11. One day I woke up and couldn’t see out of my left eye. I was on vacation in Samos. At the local hospital I was told that I must be transferred urgently to Athens. In “Births” they gave me intravenous cortisone and my vision returned. There they told me that there is a chance that it could also be a sign of multiple sclerosis.” Some years passed without any other symptoms until in ’14 the numbness in the legs started. “These became more and more intense, reaching up to my torso. When I started medicationthe numbness subsided. I stopped paying attention because I was fine, until 5 years ago I started having very severe instability. Things then developed very quickly.” Exacerbations of multiple sclerosis can in some cases cause quadriplegia. This is one such case. For about five years, Maria has only been in control of her head.
“When I lost my legs I got a “pi” tricycle, I rode it around the house and said it’s okay, as long as I can take care of myself, don’t talk at all. When I lost one of my hands, I said again, okay, luckily I have the other one. When I lost the other one, a lightning bolt went off. If I had them I could do so many things. To serve myself, to bathe alone, to swim, everything. That hurts me the most, that I don’t have my hands. If I had my hands I would shoot cannons from Lycabettus for joy. But it is what it is.”
She obviously needs someone around her 24/7. “For everything, from the smallest to the largest. Am I itching there? Someone has to help me. Someone has to change my side at night when I sleep. Luckily I can ask for it. Some people have also lost their speech and it is even more difficult. Fortunately, I can communicate and ask for what I want. I’m afraid I won’t lose my voice, it’s all I have left.” OR Siri it is the only means that gives her independence. “Okay, he doesn’t always obey me, he eats some freaks. Then some candles fall, but I think that if my disability had arisen at any other time, this possibility wouldn’t even have existed, so in a way I’m lucky.”
What makes me feel good and have a good time is humor. And before the disease I found solace in that. With the videos my purpose was to laugh. It plays a big role to have a good psychology.
The hard days
On the other hand, the social media they can become excruciating. “When I see my peers who travel, work, and I see them on a screen, I struggle. I feel like I’m not living my life, I’m watching it.” The days do not pass very pleasantly, mainly waiting for someone to come for company. “I forget about my friends, but unfortunately I don’t see them as often as I would like. They have families, jobs, others live permanently abroad…”.
She too once had an open horizon and a life full of music. While studying History and Philosophy of Science at EKPA, he sang in bands. “I was in a band that played hard rock and metal covers and later in an acoustic formation that played pop rock. I was having a great time, it filled me up so much. It’s a knife, I can’t sing anymore. It’s not the vocal cords that’s the problem, I can’t breathlessly support it.” He doesn’t listen to music today. “When I listened to music, I always sang along. I couldn’t listen to a track and be sulky. So listening to music breaks me up.”
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The idea for the video it came out this year, at the beginning of the year. “Since I obviously have a lot of free time, I wanted to use it somehow. I had been told from time to time to do things, write a blog, etc., but it wasn’t something that expressed me. What makes me feel good and have a good time is humor. And before the disease I found solace in that. So I pitched this idea to my friends and Dimitris (s.s. Dimitris Panopoulosher physical therapist and now very good friend). Since we do various pranks when we’re together, why not shoot them on video, upload them to social media and whatever?”
Eventually the videos had a big impact. The main thing is that she is having a good time too. “We laugh a lot on set, that covers me. I meant to laugh. It plays a big role to have a good psychology.”
Many have written to her that they admire her strength. “It’s not like that, I have many dark days. When you have too much free time, you inevitably think about a lot of things and among them you think dark thoughts. I feel insecure and afraid of the future. The possibility, for example, of being in an institution I am very afraid of. It would reassure me a lot if at some point I exceed my limits and endurance and I could have the choice to decide on my life.”
The taboo subjects
That she found something to fill her in such a difficult situation is a small miracle. As we said of course, her humor is not accepted by everyone. “Guess I’m not as sharp as I’d like to be. I collect it. I filter it. I’m trying hard, trust me. I leave out taboo subjects, which are not easy for someone to touch. Let’s talk about sex. People think that disabled people don’t have sex. They think the only thing on our minds 24 hours a day is our disability. That we stopped being human. No, I have exactly the same needs as before I got sick, I just satisfy them in a different way.”
Maria Rolls, but Maria rocks yet.
2024-09-25 18:11:00