Sunday, 25 May 2014

Writing Is All I Have

I am beginning to filter what I write, to be cautious about what I say here in these entries. I've started to keep some of the darker thoughts, the more challenging realities, out of my content. I am worried about this.

The why behind this troubling development is simple. People near me, physically and emotionally, are reading my blog. When I write something difficult, if I tell of something challenging, they assume it means they should be doing something to help me, checking up on me, finding out if I am okay. Lately I have begun to worry about what I say, what response it might trigger, how it might cause them to worry, to think I am crying out for help or need some sort of response or action on their part.

The problem is that their desire to care for me is taking away my ability to be honest, to be frank about how I feel and what this journey entails. I write because it is therapy, because it helps me. If I have to curtail what I write, to limit my thoughts and words because I am concerned about the response of others, then I can no longer write. In the perversity of this disease process, to try to help me, to respond to what I write as if it is a clarion call, is probably the worst thing to do.

Some of my friends and family living both near and far seem to know this already. They read, I know they read. They comment to me in our social meetings about what I have written. They ask how I am doing. They confirm that I am still alive and well, that the dark spots are just that, spots. Then we get to go on with our lives as normally as possible. I truly appreciate these people; these are the same ones I call when I need help with something. They are there when I need them. They know that helping me does not always mean helping me, that sometimes the best help for me is to be able to vomit out my feelings in text, to let them fall away from me like poison, healing me in the process.

I understand how difficult this disease is for people who love and care about me. It is the most difficult thing to imagine, the pain that they are going through. As one of my friends once said, "This is our disease too." The best therapy for me is to write, to tell my story, day to day, in my own words. This is my cure, my defeat of illness. If I have to self-censor, the cure weakens. Writing is all I have; don't take it away from me.


  1. As your mother I know how you feel about having the opportunity to do things for yourself as long as you can. You are entitled to your independence. At least you don''t have me hanging over your shoulder asking is you nee help I think if you need help you will let me know. If I can help I will but I am not very able to do anything but bring your coffee.

  2. Your honesty in your sharing is what keeps me reading. I know I cant fix it or change it,not even make it better.Just know that your feelings are being heard,and occasionally prayed for.

  3. At least they read your blog. Nobody, I mean not one person I know reads my blog about fibromyalgia. And you are lucky to have people who care about you because others have nobody.

    1. Lotus, I am so sorry to hear this from you. It must be so difficult for you, to feel alone like this. You are right, I am fortunate. I have family, friends and people both near and far who care, who read, who comment. Thank you, and I wish you well as you struggle with your illness.

    2. Thanks. By the way, I read your blog regularly and I think it's excellent and sober yet touching. I hope things do not discourage from writing. I do root for you and find you very brave. All the best, Lotus.