Definitely off any plateau that I thought myself to be on. “Reality does NOT take breaks!”
This feels more like a glide path: I experience an inexorable loss of capacity, with some small short term dips along the way: these are the pains and odd symptoms that just have to be endured: constant exhaustion and shortness of breath, balance and numbness in extremities, little purple spots in weird places. I can deal with these.
And, there is a larger set of symptoms that we have to talk about, consult with our Hospice care-givers, and make decisions about. Creeping paralysis in my left arm and right leg. Newly cracked rib which makes my right side hurt and reminds me of my very real fragility. Numbness on the left side of my tongue (this one is breaking news: feels like I was at the dentist three hours ago and the novocaine is wearing off. But I didn’t go to the dentist, and it’s likely a new site of muscle paralysis, which I’m at all happy about.) My voice is slurry, so I sound drunk, but I’m not. My lucidity and cognitive function are definitely decreasing, I fall asleep at the drop of a hat, and I feel much more focused on the mundane than on the poetic or philosophical.
The good news is that there are lots of medications that I can take. Most help, some don’t. We are well cared for; Tricia has helped us organize meal deliveries; Hospice continues to be flexible and supportive, we have people stopping by frequently, and (mostly) have the private introverted time we both need to cry, to be with each other, and to be present in this beautiful space that we feel so fortunate to live in. I’m able to do at least a little writing, and am recording some video and audio conversations that I hope will be interesting to others and at least provide nourishment for me.
I want to share with you two videos we recorded a number of weeks ago.
The first video is a conversation that our friend Rod facilitated with Walker and with me; the second is Rod’s interview just with me. These are wide-ranging conversations that come out of this experience with cancer, and cover all kinds of territory from that perspective. Rod came down from Chattanooga, and Lisa really helped pull this session together. Rod’s light editing makes for a nice easy-going conversation. Start with the first; you’ll have a sense of how Walker’s presence brings life to me.
You’ll notice the slowing of my voice and speech. This has continued, and is a real reflection of my own cognitive slowing.
I hope you’ll enjoy the conversations. If you’re present and let yourself slow down in your listening, you might join me in some discovery and learning. You might even feel a bit of the scrambling that I feel every day. If you expect information flow at the usual 2018 light-speed pace, you’ll get bored quickly.
For me, I”m working to stay present in the now, not seeking to make anything go faster than it wants to go.