Only YOU can define who YOU are


For the ones who do not know, there is a chart which defines how disabled you are. Starting off from unable to walk up to cannot do anything by themselves.

Two years after I was paralyzed I attended a conference for the disabled. The first thing that caught my attention was the arrangement of the seating.

The seating chart was fixed like this: front places were for the less disabled so moving up (or down) to the more impaired all the way in the back. Entirely logical. I would have done it the same way myself. The other thing that caught my attention was not so noticeable at first, but as I watched people’s behavior, it became apparent. There is also an unwritten chart for how people behave towards the disabled. The less disabled you are, the more people approach you and interact with you. Which in terms means that the higher the odds are for you to get a chance to prove yourself. Of course, for the ones that are more disabled, it is the opposite.

Well, I suffer from Locked-In Syndrome. That means that I cannot send the signals to my muscles to make them move. Yes, I cannot move my body, I cannot even speak. That means that I am at the back of the room and not many approach me, and when they do for the most time, it is just to say some kind words. So, in other words; the likelihood of getting ahead in the traditional way is for me almost non-existent. That is why I decided a long time ago that I would have to do things my own way.

If you are healthy, handsome or wealthy, you can get ahead easier in life without a doubt. But even if you are blessed that way, to reach your goals you must make a move and go for them. Because if you want to see things getting better, you do not wait for a person to bring you the solutions. You start by yourself.

In 1995 when the doctors give me the verdict that I was forever going to be almost entirely paralyzed, and there was no chance, no hope for a cure, I was destroyed, I wanted to die.

I had to learn to accept and adapt. I was in a dark place, the most profound point of depression. How did I get out of it? Well, I learned to speak with my eyes and to use a computer. I started to communicate and share with my loved ones, and the world. Little by little, I came out of that deep hole.

Imagine; you cannot do anything for yourself not drinking, not eating, and not even wiping yourself. Someone must do that all for you. Embarrassing and denigrating, all you can do is lie there and stare at the ceiling. How can you keep your mental health in such condition? Humor! I found a black kind of humor. I have learned to laugh at myself, and I found humor in my situation. I laugh much more in one day than most healthy people do in one week.

Yes, it is tedious to just sit at a computer all day long, day after day. So, I decided to travel as much as I can. New countries, tasting all different kind of foods, learning about other culture and customs, and yes meeting new people. Even finding love.

People are attracted to happy and confident people with a positive attitude and a zest for life. But for people to see you, you must put yourself out there. You should put yourself out in the sun where your smile can shine. Who knows you may find love too as I did.

Going out to a restaurant on a date one has three options; 1. Taking an assistant with to feed (three is a crowd, not romantic.) 2. He must feed you and give you to drink (sounds like work, not romantic.) 3. Not eating and just watch him eat (annoying and boring, not romantic.) Therefore, that kind of date is for sure a no, no.

But what about a stroll in the park, sunset by the beach, full moon over the lake all beautiful romantic things to do on a date. A date does not have to be conventional and besides the romance is in the sharing of the moment.

If you had to choose between ‘ordinary love’ or ‘extraordinary love’ what would you choose? I have always dreamt about an ‘extraordinary love’ and what has life given me? Yes! You got it, the greatest love of all.

The relationship between a healthy man and a woman who cannot move at all cannot be like a traditional one. Neither is the sex. I cannot make the first move, nor the second, nor … well, you get what I mean. I can make a humoristic flirty suggestion though and hope for the best. Thank God that most of the time my wish gets answered, and I go to sleep completely satisfy.

Life is tricky, to say the least, but we humans are imaginative, creative and resourceful. If we want to make it work, we make it work even better than it did before.

Our recipe consists of Love, Communication, Humor and headstrong Resilience and Perseverance from both sides. My husband and I are both rebels, and we love a good challenge, and that is how we make the most of our life. That is how we make what seems to be impossible work. This is how we define ourselves and our lives.

We try to do our share in helping find their way through writing blogs and giving talks, promoting a positive attitude and lobbying for more communication and unification. We all can make a difference even if we are sitting all the way in the back of the room.

Kati van der Hoeven-Lepistö

Comments (1)

  1. Sophie 28.01.2018 05:47

    This post turned my sad day to a fantastic one. Thank you so much Kati ~ you are an amazing soul!!!

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