In Loneliness

It isn’t everyday that I feel alone, but I feel it’s necessary to share what it’s like for those of us who are non-verbal when we don’t have friends. I have many people in my life, and I am grateful for that. I don’t live alone, but I am in a time in my life when I don’t have everyday planned out. If we had chosen that I would stay in a program for adults with lots of needs, I would have my days structured by them. To people who are independent this may seem like a logical decision to be in a program where someone else determines the daily routine. But for me, it was oppressive.

I have a great friend who helps me during the day, so I am not entirely alone, but what I and others who are dependent on a caregiver experience, is that most people in our lives are employed to be with us. There is always fear that they will no longer wish to be with us, that their needs are different and that they no longer can be with us. When that takes place, it is scary because it takes so long for someone new to learn how to meet our needs, and even longer for them to really know us. 

There are always people who think they know us, but the information about who we are comes from tests and observations that in no way demonstrate our potential and our hearts. I have met other non-verbal adults who don’t have the support and beliefs of their families. They are known only by their tests, and they live in an isolated existence. If it weren’t for the belief of my family and caregivers, my life would be limited.

I am happier today because I feel hopeful that we will find other adults who are given opportunities to express themselves-who they really are-and that we can share our love of writing, painting and the arts, like music. I want to find that today, but I know it may take some timeI am finding patience today.

Love, Karly 

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4 Responses so far »

  1. 1

    Pam said,

    *hugs* I am thinking of you and praying for you today!

  2. 2

    Sandy said,

    Karly,
    Just by reading your blog and other people’s comments I can see that your patience is already paying off and I wholeheartedly believe it will continue to do so. You ability to express yourself so honestly and with so much wisdom will give others the chance to rethink how they see people who are silent. Keep spreading the word!! Give Beau a kiss for me!
    Sandy

  3. 3

    Bethany Crossley said,

    Karly, I know that you will be able to reach out to a lot of people, to help others know their experience..and I am glad that you do have good people in your life who love and support you. Real friends make all the difference.

  4. 4

    Jenni Taylor said,

    Karly,

    My name is Jenni. Six years ago , when I was 16, I was in a car accident. I broke my neck and injured my spinal cord. I am now paralyzed from the neck down and on a ventilator to breathe for me.

    When I read your blog, I feel as though you have taken my thoughts and put them into writing as your posts. We have very similar feelings.

    I hope that one day we could meet. I would love to become friends. I heard of your site through ktis radio station. I am now a frequent visitor.
    Please contact me if you get a chance. E-Mail: jtic20@yahoo.com I also have a blog: http://www.thesitethatbreathes.blogspot.com/


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