I expect so much more. I am perplexed at being barred from so much of the life I used to lead. I am unable to comprehend why people think I am ‘lucky’ to live a life of the quality that I consider normal!
Hence, the dissonance – I am sensitive, prickly, uncomfortable and extremely fed up at losing so much of my life to illness and disability; others think I am lucky to have all I have and amazed at my life…given my ‘difficulties’. Something of a mismatch in almost every communication situation!
In addition to all of this, is the ‘aloneness’ of it all – not isolation, not loneliness - just being alone in your world; set apart from contemporaries in this one crucial respect. Chronic illness presses down upon us in a unique way - the absolute constraints, ugly realities, permanent responsibilities. It is grinding and never ending.
Oddly, as time passes, psychologically, it becomes even harder. As others think that we ‘get used’ to it, we chafe more and more against our constraints, EaZyD more than me. We crave ease and spontaneity and free access to life. How do we accept the limits entailed by my illness without complaint?
Not easily. We keep looking and trying to make it better. We demand the same from others. Sometimes, we succeed.
|
