Love and Support


Every so often, I get emails from people who have loved ones who have just suffered a stroke and were in a state of Locked-In.

I have been Locked-In since January 1995. Still when I hear about these people and their condition, I start to cry. You would think that a woman in my condition would have enough problems of her own to be touched by the pain of others. It is quite the contrary.

I am very sensitive to the pain of others. More than I am to my own. It does not apply just to people but also animals. A while ago, my dog Happy had a little mishap. She tore the kneecap of her back paw. She was walking on three paws and had to be operated. It was a simple operation and the vet promised that after a few weeks she would be hopping around again. Not a big deal, I know it. Still, every time I thought about the fact that she could not be her normal self for a couple of weeks I would get this pain in my heart, and I would weep.

Watching television programs about human or animals stories are like a roller coaster ride for me. Slow then fast, up then down and then, over the head. It is like this because beside the pain of others I am also very susceptible to the joy of others.

One fight that I cannot ever win is the battle against my tears. If something touches my heart, my body reacts and multiplies the emotions by twenty and then they storm out like a Tsunami ripping everything in its way. It affects everyone that is in my vicinity. If it is a howl of pain, it can be overwhelming and can bring tears to the eyes of the ones who hear it. When it is a joyous reaction, my body throws out laughter that would make an opera soprano jealous. The laughter comes out all the way from my lungs and just as my howl can bring out tears my laughter can bring out a smile.

Not to be arrogant but my presence can have an effect on a room. Not because I am so impressive but because of the way my body reacts. I have to think at least twice about going to events that can get too emotional. The line we humans have between joy and pain is a very thin one. It does happen that when something touches me deeply, I lose control over my reaction and the wrong one can come out. A cry can come out in a moment of ultimate joy or laughter can come out at a moment of deep pain.

Since the stroke, I have had very little control over my emotions. Almost no, control what so ever over my reactions. It is always a fifty/fifty chance of what would come out, laughter or cry. It has happened that during the sad piece of a theatrical performance I started to laugh loudly and I just could not hold it back. My assistant had to take me out of the auditorium to the entrance hall for the rest of the play.

My heart breaks a little every time I hear about someone who is destined to spend the rest of his or her lives in a state of complete or almost complete paralysis. I forget that I am trapped inside my body. I guess I know how it feels like and I understand better than anyone else does what he or she is going through.

I do not know what to answer when their loved ones ask me for advice. I can only give them some pointers about what has worked for me.

For me, it was not what my family or friends did for me what made the difference. At the end of the day, they could not do anything for me more than just being there. That made the difference-their presence, their love, and support. The simple fact that they were there.


Comments (3)

  1. Leena Jokiniemi 15.01.2016 08:45

    Muistan elävästi reissumme “aikojen” alussa Linnanmäen Peacock teatteriin, kyseessä oli joku naurupätkä ja et tahtonut pysyä tuolissa kun nauroit niille hauskoille jutuille <3 <3

  2. Steve 15.01.2016 18:36

    Hello, Kati. I think it’s only when you experience the life changing effects of a chronic condition, that you begin to fully realise the power of your own emotion. After my father had his second stroke, I drove the usual 280 miles to go and see him in hospital. He wasn’t expecting to see me but when he did, he just burst into silent tears. Equally no I am severely affected by MS, I get really tearful about children. I was lucky enough to have had a normal childhood. Thanks for the post. Steve.

  3. jim neville 19.01.2016 08:18

    One fight I can not win is the battle against tears. If something touches my heart my body reacts and multiplies the emotions and then they storm out like a Tsunami ripping everything in its way.

    You are good.

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