Tuesday, 5 January 2016

Why Bother

I'm feeling good today, better than I have in the last few days. I know why. It's because Katherine was with me last night, and this morning. Whenever she is around I feel better. She is a strength in my life, a reason to keep living. She keeps me alive.

The last few days have been tough. More than once I have thought "why bother?" I would say that the single greatest intellectual struggle I have, on a day to day basis, it the struggle with one basic question. Do I want to live like this? Why bother?

There are a great many things which impact my quality of life and my desire to live, not the least of these being the people around me, the people who make my life worth living.Yet, notwithstanding this incredibly positive influence in my life, I struggle on a daily basis, asking myself if what I have is worth living for, if the life I have is worthy of the continuance thereof.

Given the pain, the challenge, the frustration, and ultimately the aloneness of it all, I am compelled to ask myself if it matters if I am here for one week, one month, one year. I wonder if all of this is worth it. Dying is easy; it's what will happen at the end of my life. Living, like this, is hard. It takes so much out of me. So often I want to give up.

Then, Katherine comes along. She sits with me, hugs me, tells me everything will be okay. She nestles against me at night, rises up with me in the morning. She makes coffee and breakfast, brings them into me on a tray, sits beside me and shares this time with me. She gets me going in my day.

It's very easy with a disease like this to fall into a well of self-pity. It takes almost nothing to throw me off keel, to push me over the fine balance line between feeling alive and wishing I was dead. Falling off that balance hits hard, leaving me drowning in my emotions. I need help to get out of that wallow, help to come back to balance.

Katherine does that for me. She is why I bother.


  1. I have been reading your blog for the past few weeks catching up to today's post and my heart goes out to you. I have a friend who is going through the diagnosis process now - and has been for a few months so I wanted to read up on what to expect should her final diagnosis be ALS - which is definitely on the table. I want to understand the best I can what she may go through and your blog has been a huge help in assisting me in this. I wish I could do something to help you as much as you have helped me in gaining a bit of understanding of this cruel disease and how it affects the body. Thank you for raising awareness of ALS with your blog. Katherine sounds like a true angel in helping you and loving you through this monster of a disease. All I can say is I am so sorry for what you are going through and to also say THANK YOU! Your blog is making a difference in educating me and others in what ALS does. Your openness and honesty about your experiences with ALS are deeply touching and greatly appreciated. May you find peace and joy where you can. Please know that you are making a difference. Hugs, Rebecca (Charleston, SC)

  2. Dear Richard, I want to tell you how much your blog - and you - mean to me. Your words come directly from your heart. It does not matter to me if there is news or events; I value the authentic sharing of your heart's journey, and I cannot begin to imagine the courage required to continue every day, to share with the world your truth. Thank you. Sending you so much love and wishes for peace. May you know peace. May you not suffer. May you be free. Jane