Wednesday, 9 April 2014


I treasure my independence. I say I am fiercely independent, others say I am stubbornly independent. It's not that I don't appreciate the others around me, nor do I turn down help when I need it. It's that I believe strongly that I should do for myself for as long as I can, look after myself until truly unable to do so. I want to do what I want, when I want to do it, how I want to do it, where I want to do it. I realize fully there are limitations to this desire for personal reliance, even more now than ever before. Yet I am unwilling to give up this desire, this need to do for myself.

My Dad used to say that a man "carries his own water"; right up until he died he resisted anything that might steal his freedom. My Mom simply demonstrated it in how she lived, and still lives, making sure that she is able to care for herself as far and as long as her limitations will allow it. Each of my siblings shows this independent streak, this unwillingness to allow the world around them to dictate their limits, willing to do what they need to do to live the lives they want.

My friends tell me I need to ease up on this, to let them help me more. They tell me that I should learn to ask for help sooner, learn to accept their generosity without feeling the need for reciprocity, learn to let them do for me what I can no longer do for myself. I am learning to accept this, uneasily, resisting it all the way. I am very grateful for the things they do for me, completely unable to understand why they do it, struggling with the seeming one-way nature of things. It is a result of the transactional nature of my upbringing.

The latest step in my loss of independence will start in the next few days. Home Care will be coming into my home to care for me. They will start with Range Of Motion exercises, and general home cleaning. Basically they will replace Rosa over time. What worries me is that I will now be dependent on their schedule, my life determined by when they can come and go, not when I want to come and go. I will now be forced to be up and out of bed when they come, since they will not accept responsibility for having keys. I will have to accept their rules and requirements to get these services. I am not in charge of this process, I am dependent on it.

This is another loss, another leaving. It is another thing that ALS is taking away from me. I will have to learn to live with it. After all, I can no longer carry my own water.

1 comment:

  1. It is a disease of loss sweetheart, I cry for you. So many times I think of you when I go to bed and tears come. I think of you as a healthy baby and an active toddler and a busy boy and an independent young man. All this means I love you so so much.