Writings of Constance Ore ( 1937 – 2010 )

What does this ending time feel like? To me, it is feeling sick most of the time, and that is accompanied by the great exhaustion. I weigh 116 pounds and I look very ill. When I saw myself in the morning recently, it made me cry. In visiting with the hospice nurse about how one would deal with getting pills into the system without eating I asked, “Do you mean one goes forward, consuming pills and water and nothing else?” She said “That’s right. . .we are now into ‘quality of life'” and that does mean trying to keep the suffering down”. This morning, feeling particularly morose, I breakfasted on a large quantity of pills and water. Doable, but not delightful. The question that hovers over the experience is “Why?” Those of us who go onward encased in our present bodies ask again and listen carefully. This query must surely be made by humanity all over the world but the answer will not be heard outside of eternity.

Days move forward with the summer’s end approaching. For our eyes, it announces itself through the lovely gatherings of dusty pink sedum and the sagging goldenrods that edge our space on every side. Cardinals and blue jays provide some color and the sound of the jay’s morning scolds is welcome after a summer season so rich with sound.

I determined to write a short poem for each day that I go forward. Sitting and waiting is too grim. Immediately, I find true poetry is not an easy thing, a fact that has been brought to my attention through vigorous paragraphs in books gotten from the library. Since there is no intent to wave the poems about, I will just write.

And yes, the conversation with God has gotten shrill at times; mostly though, the respite of music that bears beautiful text is always there, and comfort is found. and when one wants to shake a fist, the psalms provide many good words for outrage and fist-shakings.

This is hard to do. My stomach is sick most of the time, even without eating, and my energy is such that the oxygen needs to be on all the time. I sleep a lot. There is the night voice that comes and says, “Too bad you’re in hospice; before, you could get some red blood and feel better for a while”. Then I am awake and the rational thought returns; there is no other route selected for me.

Think of all the people one sees going out and about in a wheelchair, oxygen bottle near, the nose piece in place. What other lives lie behind them? Last week, John-paul got the wheel chair, the oxygen, the dog’s leash, the Mama and the dog all put into the car, and we drove over to the walking trail that is near town. Alphie thought he had gone to heaven, and behaved accordingly for the first moments that we were in this new space, but then settled into the walk. I had on a sun hat and sun glasses, so I was pretty certain that I would not be recognized. I do and I don’t wish to be seen – One has to be brave about going anywhere because you are no longer who you were before. We met a young woman whizzing along on her bike, and as she passed, she flung “Hi, Connie” over her shoulder – perhaps the good looking man pushing me and the great chocolate retriever loping along gave hints of identity.

The illustrator is traveling this week, so we must do with words only

Our actual 50th wedding anniversary took place on Saturday, while our celebration took place in April. This was an excellent plan because I would not have enjoyed food, and the gathering would not have happened in the same fashion since I do look pretty sick now, and people would have been at a loss for words. We celebrated, of course, with Heidi the chef of the day and Charles bringing in many flowers.

I think Charles and i thought that 1) Nearly zero immunities because of the disease and 2) Pneumonia, historically the illness that gets one over to the other side, meant that I would die very soon. Sadly, we were wrong. I say “sadly” because the disease takes just a little bit of who and what you are each day. This is hard. Now my balance is challenged so I really do use the walker with the tennis balls on the ends of the pieces that keep you upright as you fling your shiny and clear green oxygen tube over your shoulder and go forth. Unfortunately, due to a general lack of all the skills required, I have rolled over Alphie’s tail – just the very end, but causing great affront as conveyed though his big sad eyes. I also have given over to John-paul the morning walk through Sanctuary because of not enough energy. He takes the camera and brings back lovely photos of sunrises, spider webs, and other delights, but it is not the same.

This Tuesday in August I slept all day. Last night I was sick to my stomach, and when one is also dependent on heavy duty drugs, then the problem becomes what goes, what stays, what went and how can that be sorted out. (I chose to not do the pain pills, to the hospice nurse’s relief.) I now think “well, that wouldn’t be so terrible. . .perhaps it would take me to the quiet and peaceful death that we all hope for.”

So goes life at Sanctuary right now. Charles and John-paul keep everything in order, with mowing, trimming, cooking and care. Alphie has one ear and one eye on John-paul much of the time because the rides, walks, and general good times are begun there. I pray a lot, and I hope to die before I get to experience the complete offerings that the disease has to offer.

Since beginning the Blog, many of you have written in response “I’m (or) Mom (or) Dad (is) in Hospice now”, to tell me about the profound step that this comment encompasses… The thoughts about antibiotics and other meds that might take this away were there right behind the eyes, but the rational self repeated again that there is no way to delay or hurry death. We all die, so everyone you meet today will join you and hopefully whatever has been your own most glorious mental image of heaven will begin to surround you. I don’t know the great mystery.

The disease is most profoundly involved in my left lung. If I take a huge breath, the lung informs me “Don’t do that”. The loud, constant hacking must be annoying, but the caregivers assure me it is “nothing”. I think “hah!” but drop the subject. My life has not changed greatly since last week,that is, in the cadence of how the days move but as I go through it feels like its takes me a long, long time. I am inhaling oxygen and I reel a little when I walk, so you can imagine someone hovering, right? My energy no longer exists and I am getting confused about what day it is.
There. That is the way this feels today. I think I’ll give “The Disease” a big font.

We have found the readings from the Psalms to have the cadence of comfort…Psalm 121, Psalm 112, and on and onward. The best prayers seem to come from childhood. “Now I lay me down to sleep, I pray thee Lord my soul to keep. Asking thee to watch and keep, and to send me quiet sleep.” Perhaps that prayer repeated hundreds of times throughout this life comforts because here is the same God that made me always feel safe. I think we all had a “Pneumonia Moment” when we signed the Hospice papers, and the fact that I am still here is a happy surprise.