I often repeat to myself and others a valuable lesson I got from the book – that suffering is not the pain, weakness, or any other Physical/emotional toll of our disease – suffering is the response we have to these experiences. That does not mean our pain does not hurt, that it isn’t real or disabling – simply that we can accept the pain, understand that it is a message surging from our body to our brain warning that something is not right, that it is whether we want it or not, and that we accept it as a condition of any ( or for many of us, every) given moment and we do not waste any more of our precious mental and physical resources fighting it. This lesson has given me so much more freedom: by accepting pain as my normal, it has less control over me. This does not mean that my pain does not limit my activities, cloud my thinking and at times, leave me curled up in my recliner, barely able to move. But it does not consume as much as it used to. In fact, by accepting my pain I think I am able to do more – it just becomes one thing to take into consideration as I choose activities. I do take prescriptive pain medication – not the extreme opioids I was on while trying to work full time with this condition – so I’m not suggesting that we don’t do what we can to reduce our pain and other symptoms. Each person must decide for themselves what is needed to make it possible to live the best they can.

That being said, the truth is that I have been falling back into far less healthy and heLpful behavior since fall. I almost feel like I’m trying to run away from my disease – I know in many ways I’m getting worse and yet I’m doing more and actually feel driven to meet goals ( that I set) and therefore ignoring the needs of my body and mind. Getting up and started in the morning is so hard and involves so much pain, that I don’t want to go to bed again because I’m afraid I won’t have the strength to get up the next time. For some reason, I’ve been consumed by a feeling that there isn’t anytime to waste, that I better do whatever I’m going to or want to do soon before it is too late. So I push through too often, leading to worse symptoms, more severe crashes and a growing anger and frustration at my own limitations and the failure of my partner to be, well, more of a partner. This is all very self-defeating I think and I need to rework my perspective and responses. And that is why I’m so grateful to have stumbled upon this discussion group, however late in the game. It is time for me to reread Toni’s book and look to the wisdom of my fellow travelers through life with chronic illness. I will be reading all of the past discussions and I thank all of you for sharing.

I’m so glad that that part of the book resonated with you. Not too many people mention that passage, but it was a big turning point for me — finding room in my heart for the full range of emotions that arise.

I have a long history of working with young children, and I would often offer empathy when they would get so frustrated. I would say things that showed I was trying to understand, and I’d often say something such as “I know you want that ball. It is hard to wait. I wish it was your turn right now!” In this way, sort of, I open my own heart to my suffering. I soften my heart to hear how I’m feeling, no judging, no trying to escape, and I try not to blame myself (over doing it, not exercising, eating too much chocolate, etc, whatever).

Toni writes: I made room for fear.
Yes, it is like that, exactly. Thank you for writing such an important, comforting, inspiring and edifying book and thank you RA Guy for creating this discussion.

Thank you both for “making room” for our thoughts and feelings here, and for everyone who is contributing.