The 3rd part of the story of how I became unable to see and hear is finally here. Here are the 1st and 2nd parts of the story, in case you missed the previous posts, so you can have a better understanding of what happened.
It is becoming harder and harder to talk about this events and it is breaking my heart into more thousands of pieces just by thinking of them. But I started it, so I have to finish it.
In my previous post I said that I was yet again moved to another hospital: The National Institute of Cerebral Vascular Diseases. For the love of God, I didn’t understand why I had to be moved again! I thought that the treatment was going well and I finally started feeling a little safer and comfortable. While there, I remember saying:”But I can see myself in the mirror!”. I was faintly able to recognize myself in the mirror, I could see my mother’s blurred face. Right now, I would give anything to have even a quarter of what I could see back then. But my brain doesn’t want to give even 1% back. It is unbelievable and incredibly painful to lose so much in such a short time.
I believe this last transfer to another hospital was crucial in my losing my sight and ability to hear. I simply got fed up with everything and all I wanted was to go home. Every last shade of hope that I had disappeared and it was replaced with terror and disgust. The first thing they did when I arrived was to undergo an Angiography. I still have no idea what they did to me exactly, but all I remember from that medical procedure was that it felt awful. I was throwing up the whole time and I was so scared because nobody told me what they were doing to me. Everything happened so fast. On my right side the doctors were cutting something in my upper right thigh and pushing something through that cut. On my left side, a nurse was trying to calm me, she was doing her best to be nice but I didn’t care. I thought I was in surgery. I don’t remember anything else about this part. My mother said that after that I also had a CT scan and a short MRI taken to see if there were any brain tumors or if the “water in the brain” that the ophthalmologists previously discovered was higher than normal. They discovered nothing of the sort. Instead, they said that five of my dural venous sinuses on the right side of my brain were filled with blood clots.
I was immediately put in intensive care, under strict observation and heparin treatment. The doctors were very alarmed because my left arm and leg were reacting abnormally again, like in epileptic patients. But I didn’t know that. I didn’t get to talk much with my parents that day. It was the first time that I was alone since becoming hospitalized. That night, on December the 5th, I lost my eyesight completely and my hearing was severely impaired. I was able to hear a little bit with my left ear, but only if people talked near my ear.
Even though I was in intensive care and, supposedly, it should be quiet. That wasn’t the case there. I was with other three patients and it was so unbelievably LOUD. All I could hear were people’s voices, the noise made by plastic bags,and many other noises. You are probably wondering how I was able to hear. In that situation, that would have been a blessing. Unfortunately, I lost the ability to understand and recognize sound. Being neurologically deaf means that all the noise that is perceived by the external ear can no longer be recognized by the brain and turned into sounds that have a meaning. They just simply remain noise. (I can’t stop crying, as I remember this painful experience).
I was hospitalized for five days in this hospital and the whole time I felt like I was in a nightmare. I was fortunate because they let my mother stay with me all the time, though she would have to step out of the room whenever a new patient was brought in. My mother stayed with me day and night, sometimes my father would take her place so she could get some sleep. I still don’t understand how she was able to withstand all that, not having a proper sleep for such a long time, feeling stressed and scared. But, I guess, a mother’s love is infinite. She can bear anything as long as it is for the sake of her child.
As usual, they took blood samples every six hours, to monitor the thickness of the blood and to discover the cause. The doctors were stunned because they had never seen anything like what was happening to me before. Although I was given heparin, which is the strongest blood thinner, it didn’t seem to work for me very well. While heparin was being pumped through my vein in my left arm, the nurses were trying to take blood samples from my right arm, but the blood would clot in a matter of seconds.
On the 6th of December my sister came to visit. She didn’t come with us from the beginning because it was inconvenient. I was really happy, I was just thinking that it would be a nice St Noel surprise. She wasn’t allowed to stay very long, but I was able to talk to her a little. She told me about our little Yorkie, my two Guinea Pigs, and all sorts of other trivia, which was a nice change of pace. I felt so incredibly happy to have another loved one next to me! In that moment I felt that I wanted to go back home. And I asked my parents to go back home. I had to wait for another three days because, firstly, it was the weekend, and patients aren’t released from the hospital during this time; and secondly, we had to wait for an available ambulance to take me to the hospital in my home town.
This is what I remember, but my parents told me much, much later that things were more complicated. The first day I was checked in and the doctors discovered all those clots they told my father that my life was in danger and that if the treatment were going to work, in 48 hours I would be safe. The doctors weren’t very optimistic about my chances. That night there were at least 10 doctors present studying my case. They explained to my father how blood clots filled some of the dural venous sinuses and , as a result, blood and oxygen stopped flowing through the smaller veins which led to an ischemic stroke: neurons started dying. They came up with different opinions about the probable cause: most of them said that the birth control pills determined the coagulation disorder, some believed that I might have some protein deficiency, others thought that I might have a rare blood disease. Unfortunately, they weren’t able to arrive to a definite conclusion. My father was shocked, his heart was starting acting up again (he has heart problems), and that is why he called for my sister to come visit me. He thought it might be the last time that I would get to hear her; and it was also for his own emotional support.
The first critical night went by smoothly, with no significant incidents. The second day went by the same way,and then the third, fourth and the fifth day. I had beaten the odds, and I survived.Everything was within acceptable values, except for the blood: it didn’t get ticker, but it didn’t become thinner either. The doctors were at a loss: they couldn’t perform surgery because the vessels were to small and the treatment was working too slowly. They told my parents that there was nothing else they could do. The treatment I was under was standard procedure for this kind of situation and was available in all hospitals. My parents had also reached the limits of their strength and budget, and asked that I be discharged.
On the 10th of December I left Bucharest and went to the hospital in my home town.I remember that the drive back home in the ambulance was very bumpy, and stressful.
I was going to make this the last part, but there was so much to say. Out of all my hospitalizations, this was by far the most terrifying. So, I ask you to bear with me until the end.