As told by my brother Timo:


I’m standing by the bed. Tears are strolling down my cheeks, I can’t help it. I look Marja in the eyes from about 10 inches (20 cm) away. Marja’s eyes are open, but there is no sign of life – her eyes are empty, and there is no reaction.


“Marja, I don’t know if you recognize me, but if you do, and if you can, blink your eyes once.. if you don’t, blink twice… or just blink..” …After a while Marja blinked her eyes once!!!


“Marja, darling, now it’s time to fight – you’re coming back, right? .. can you blink” .. The next blink was full of Marja’s determination. That moment I realized the game is not over, like the doctors had told our parents. They had said it’s very likely she’ll die. I turned to face the doctor at the foot of the bed and my father. “listen, Marja knows what’s going on”, I sputtered. The doctor, don’t remember the name, started talking about rehab. It was close call.. A lot of meaningful things had happened in such a short time. Doctors didn’t even mention death any more.


As I gained consciousness in the ICU, I slowly realized, to my horror, that my whole body was paralyzed, and I couldn’t talk. I was surrounded by a bunch of doctors, who were wondering about my condition. Just my eyelashes were functioning. I was like molded in concrete. I could feel perfectly with my whole body, and I saw and heard everything. My brain was working, desperately, but the doctors didn’t believe it at first.

My loved ones visited me all the time, but I had a pain in my heart. How are my children? Worst of this all was that I couldn’t communicate with my family, until later. I tested my brain and my memory, and so I tried to remember my bank account number and the social security numbers of my children.

The pain was crushing at first, no, it was hell. I had blood in both of my lungs as a result of the failed dissolving of the clot. For the next two weeks it was either way; I could live or die. I was told that 95 percent of cases like mine, they don’t make it. A finally I had a diagnosis: Locked-In Syndrome. In other words, I’m in prison inside my own body.


The worst feeling, maybe, was not to be able to communicate with my loved ones. It bothered me all the time, and especially when it had something to do with my children. I had a million things on my mind I wanted to solve: seriously, how hard is this for my children, what’s going to happen to me. All I knew were the dark predictions given by the doctors… I worried about my loved ones, will I survive financially, will the insurance cover any of this, what kind of medication am I on. Hundreds of questions I never got to ask.


First I communicated with just my eyes. One blink was yes, and two was supposed to be no. I was so frustrated when the nurses and doctors didn’t even bother to look, meaning I wasn’t asked anything. Or if they asked, they got confused with the number of blinks. It had been two weeks, and still the nurses filed in their reports that “the patient maybe blinks the correct answer.” … So, it was just a waste of my limited strength to even try to say anything else. Things got better only when my family got mad at the situation; they wouldn’t accept it any more, the fact that the staff didn’t even try to improve my ability to communicate.


A friend of mine invented a very simple system of vowels and consonants, and suddenly I was able to “say” words, slowly. I remember I had tears in my eyes when I said the first words in a long time: “thank you.” The next step was the piece of cardboard my friend had planned. First I picked the line, with my eyes, that had the letter I wanted to use, and then I blinked when my eyes met the correct letter. My friend wrote down the words, letter by letter.

It worked, but it was so slow I was fuming. But, we got important things done, and I even talked with my children! The fight for my life continued on all fronts as my CRP was sky-high, and for two months my life was hanging on a very thin thread. At this point I was transferred to rehab, and the good old cardboard of letters was hired again. But miscommunication took place during pretty much every discussion.


I was also extremely unlucky. No matter the procedure, it was always followed by some sort of new complication. I paid for so many doctors’ mistakes, with my health. It’s only afterwards I realized I must have a special relationship with my Guardian Angel. I’m more than happy to be here today and able to write to you.

To be continued...

Kuva: Iida Minkkinen