“You can’t connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future.”

Steve Jobs

 

This quote sounds so inspiring when it comes to career goals and life aspirations. But, from the viewpoint of a stroke survivor, it is a state of mind. My ‘dots’ were not in my own hands at one point in my life; but over the years (almost 16 now) I have made them my allies, simply choosing not to give up on myself. Each of us dealing with a neurological disorder needs to find a magic formula of ‘dos’ and ‘don’ts’- set up rules, stick to them and find a quiet harbour.

Making a list for every day is not possible to do. I tried it many, many times since I acquired my disabilities. My brain is functioning in its own way and we never reached an agreement or best behaviour model! To write these lines I needed couple of evenings, despite my inspiration, because a headache weakened my concentration. But I managed.

In a nutshell: I acquired my disabilities while I was a high school student, more than 15 years ago. That was the hardest period of my life, since my chronic disease repeated and struck with force: I could die easily.
But life gave me another chance. I had to quit school for a year and a half, continuing schooling from different starting ground: seeing double, taking strong medicine and having hemiparesis were just part of my problem. My neurological frame was ruined and it will never be fixed again. Chronic pain became my constant friend, my inevitable devil. I had to accept the fact that I will never walk properly again, use my right hand the same way or see normally. Those are facts, I cannot deny them anymore. I have managed to accept myself in new light with great help of my dear psychologist and other professionals and members of my family and friends.

Writing these lines may be not so hard for me now, but coming to this point was indeed challenging. As I read somewhere: “To understand another person, you must swim in the same waters that drowned them.” So I will try to lead you back in that time when my life started shaking from the ground.

“Because it is not the same life, nor am I the same person.”

This photo is of my old diary, which I started to write less than a year before my first stroke. From this I’ll share some parts of typical teenager life, ordinary ones; after that I will give you an insight in parts of my life after my first and second stroke. Because it is not the same life, nor am I the same person. Here you will see a difference between #LifeGoals and #BrainLifeGoals. It is really challenging to open this notebook after so many years, believe me.

 

Fragments from my diary

Monday, 2nd of September 2002

Dear diary,

Today is the first day of new school year and everything else becomes unimportant. What is important is school. I hesitated a little to write you because my brother is such a sniffer. First time I had to cut out few pages, out of fear, but now I will not do it. So, Diana fell in love with Alexander, and, by her story, Mia too. He is cute a bit. I have to tell you that Martin is so cute this yearJ. So I have to know is he still in love with me. Angel has got some awful haircut, and there are rumors that my mentor will go to military service. What will I do without him!!!

Love you! Your Maki

 

Sunday, 1st of December 2002

Dear diary,

First of December! A month to go and New Year. But, I cannot wait! But, during this month I will have a billion written assignments and control tests. On Wednesday I will do a written assignment from physics. I am scared a bit, because this will be one of the real tests before competition. At this moment here are one granny from the neighborhood and mum.  I sometimes wonder why I never write about my family and cousins. Guess because I don’t want to or I don’t have a reason to do it. I write about friends and those who I don’t like. But it doesn’t matter.

Love,

Deine M

Monday, 13th of January 2003

Dear,

This evening we went to the concert organized for Orthodox New Year’s Eve. One band and two singers. And very handsome guitarist! Too cute! One guy was standing above me, and pushing me, and then I met Gile. That crazy guy asked me for a drink, and I said I was waiting for someone, but I am not sure whom. 😀

Marijeta

 

Friday, 11th of April 2003

Dear diary,

First-sorry for not writing to you. Second- I am so dead. Tomorrow is competition from physics, and I feel such a stage fright. I did a lot of computational tasks and I feel that I know it (well, that is something) but this stage fright will bury me. I think that I won’t sleep tonight!

 

Saturday, 12th of July 2003

I will tell you why I did not write to you. To start with, in the competition I took 17th place and after it went to the excursion. At the excursion I got sick. A blood vessel in my brain exploded and I had very strong stroke. From hospital in Bar I was transported to Podgorica, and from Podgorica to Belgrade. I was recovering there for a month. After I came back home they approved further treatment called embolization in Switzerland. Now I am recovering at home but my right arm and leg are desperate. But, OK.

 

Monday, 28th of July 2003

Dear diary,

Last night I had a small crying attack. Something exploded in me and I don’t know… I was really bad. I am so depressed. Everything is so different, I am different. And everybody around me. All that is very upsetting.  And school.. I am very scared, but I hope that everything will be fine. There, I am telling you, everything is so… different.

 

Thursday, 18th of September 2003

Dear diary,

Today is my birthday. I don’t celebrate because it is not the time for it. It is not the time for anything. That’s how it is. I feel so bad. I am trying to be the same as before, but it just doesn’t go like that. School is terrible. Everything is different and stupid. Classmates, professors, everything. I feel stupid and lonely. I cannot describe you what annoys me, but the list is long. This is not me anymore. It’s someone else. And I miss the old me. Here, I cry. Pathetic and funny, isn’t it? I think God should take me. I am not for this.

 

Sunday, 15th of February 2004.

Dear diary,

I did not have the chance to write you before. At this moment I cannot write at all, so my brother is doing it on my behalf (me, me, me).three months ago I had another stroke, I was in a clinic in Podgorica more than a month and after it I came home. After a month I went to Switzerland and had another operation. Everything turned ok for me and at the moment I have a physical rehabilitation in our hospital. What to say, I feel like a cool girl. I have troubles with right side of my body, leg and arm, but it will pass/go away, 100% I am sure about it!  Rt7. I also see double, it’s called diplopia… Next month I will go to the spa to continue my physical treatment. Hope for the best.

Love from me

 

Epilogue

When you take someone’s old diary and read some lines, if you really know the person, you can see the difference. But my transformation, due to two strokes and further changes as its result, was very fast and inevitable. Yet, almost invisible. I was dying from the inside and was not aware of it. I wanted to die and simplicity of it was terrifying.

One period of my life I could not use my right arm at all. So my family was writing on my behalf, helping me to put clothes on, eat, taking me to physical rehabilitation. Spa treatment helped me a lot. Psychological treatment too. But most of the job that came after the storm I had to do on my own. It was heartbreaking, challenging, and hard at many moments. It was most important job in my life, still is, a to-do list. Had to do all from scratch. Hated it, but did it. Learned to eat with my right arm again. Learned to write with my right arm again, but had to quit it because I was too slow when I came back to regular school. Became naturalized left handed person. Nothing is perfect, but it is as it is. I made it from the ashes. I’m proud of it.

As a youth worker I am trying to explain to the youngsters why they should not be afraid of differences

I lost most of my friends due to disability stigma and prejudices. Gained new ones, treasure of my life. As a youth worker I am trying to explain to the youngsters why they should not be afraid of differences, and disability is one. Love it. Feel accomplished.

Double vision is my companion for more than 15 years. I hate it. Slow reader, studying sometimes was hell. But I was a “B” in the end. And my job is all about reading. I don’t regret it, I love it and am always giving my best to be even better. I could not do my Masters yet, but hope someday soon. I love the idea. I can’t drive any vehicle and love to walk. The power of walking, which I did not have at one point in my life, is one of the best feelings ever. I cannot forget it.

Constant headache is such a small thing after all these years. Chronic pain is just a fact, which in my everyday life does not make a big difference. But it is here and I am well aware of it. Sometimes I need a day off or just couple of hours to rest. That’s why I need a friendly work environment, where you have the feeling of understanding by superiors. I quit one job because I didn’t have it. I don’t regret it. Moved on, happy as a child.

And I came to that point of life where my health situation is stable. Probability that I will die from stroke is small. Thinking how great it will be to have my own kid, named Sunshine, with a man I love. I can’t wait, but I’m patient too.

This painting is wonderful and it reminds me of my life path. There is no space for turning back, just look ahead and you will notice a beautiful field for exploring and bales of hay for resting. Keep it simple!

Marijeta is Youth Advisor at Youth office of Municipality of Berane Montenegro and a Member of ENIL Youth Network Board

You can read Marijeta’s complete blog here

Find out more about the #BrainLifeGoals campaign here