Blog entry by Kathy Cleveland Bull
September 18, 2012
We laid beside each other in bed. And I heard her breathe. In that moment, I had the sharp and aching realization that her breaths were numbered, limited. Each breath trudging in a slow and steady pace to her last.
Earlier that day, Karen found out that she was no longer well enough to work, drive or live alone. Her illness, Fronto Temporal Dementia, thankfully, took away the sting of that news. She wasn’t able to grasp it. But I knew. With the diagnosis of FTD, with no treatments and no cure, she had been given a death sentence. Her days, her breaths, were numbered.
So, as my twin sister lay sleeping soundly beside me, I was tragically aware of her every breath. The shock of the news of her diagnosis earlier that day morphed each breath into a sharp dagger representing the nearness of and finality of mortality. My illusion was shattered by this natural, predictable, raw truth.
I loved the song we heard as kids which was often sung at church during special revival services, “Breathe on me breath of God.” So many of the early hymns and stories and sermons we heard in church placed God “out there”. And yet prophets and poets and spiritual mystics put God “in here”. I’ve always related more to an “in here” God. My personal hymn and my personal relationship is more “God breathes me”.
During Karen’s last few breaths, spaced so far apart, my daughter asked quietly, “Is that it?”, “Is that the last one”? “I don’t know” I said. “Let’s wait and see”.
Our breaths are numbered too, yours and mine. One day – a beautiful, peaceful, divine day – God will breathe me one last breath. I will think, “Is that the last one?” And then I will dissolve into Blessed God Breath.
Such beautifully written description of life’s reality. Life truly is fragile…I pray God’s breath for you as you continue to face life without Karen. We love you!
Kathy, thank you for bringing us to the blessed moments you shared with Karen and your daughter, and for the blessed reminder to “breathe deep” while we live.
Hi Kathy this is Melissa I took care if Karen. I have left my job to care for my sister n law 51 much like Karen had been very successful and now suffers from the same form of FTD. I would really like to become active with the FTD foundation and find out information on how to start a support group in the columbus area. I know you were very active with the FTD do you happen to have any contact numbers for me to start with?