Community and friends
A beautiful darkness
I knew exactly how I wanted to spend Earth Hour last night. Shortly before 8, I walked round the house turning off lights and appliances. In the silence, I lit incense and candles. Then I turned off the last electric light and sat down with my notebook and pen to capture my memories of my brother’s death this week.
His life, as a man with Down’s Syndrome who in the last four years sank into the vicious grip of Alzheimer’s disease, ended gently. He would have been 51 in June.
There are snapshots in my mind of the last few days, in focus like the pool of light from my candles, while other parts of the room are in darkness -
Arriving at PJ’s hospital bedside to find him propped against the pillows, arms by his sides, an IV tube back in his hand, an oxygen mask over his nose and mouth. His breathing shallow but not laboured, his face peaceful. One of his carers, M, by his side holding his hand, a position she immediately relinquished to me.
The sensitivity of the doctor who came to see me. She explained PJ had developed another bad chest infection which was very serious, because he was already so frail. She asked me what they should do if resuscitation was needed. I told her there are worse things than death, that I didn’t want PJ’s last experiences to be of violent medical intervention.
The beauty of his eyes in the hours that followed. He gaze moved, as if he was watching something. Those eyes under their heavy lids seemed to be a more intense dark blue/grey than usual, serene and gentle. None of the bewilderment that was common in his expression these last few years.
The moment of sheer black comedy when his breathing seemed to stop. I thought he had died, and leaning over to kiss his forehead was startled by his sudden intake of breath and jumped back. He carried on breathing for another hour after that. Back when he was well he loved to tease!
The final half hour, as his breathing sank to an whisper, all the little sounds of the hospital around us seemed to recede. Just the two of us in that quiet, dark place. And then barely any change at all, but all the change in the world, as his eyes widened then stopped moving and the whisper of breath was over.
I sat with him a little longer then went to fetch the nurse and phone my sister. When I got back, the nurse had removed the oxygen mask from his beloved face. He looked beautiful in death, the heavy eyelids finally shut, cheekbones prominent, lips pale and relaxed. After a little while, I kissed him goodbye and left.
The next day I went to register the death. The Registrar was calm and sympathetic. There’s a series of questions they have to ask, one of which is “What relation are you to the deceased?”. My response to her was “He’s my brother”, then I quickly corrected myself: “He was my brother”. She looked at me and smiled gently. “He still is” she said, “he always will be.”
Yesterday, my sister and I went to his care home to clear out all his things. Among them was this photograph, taken by a family friend seventeen years ago, when my nephew S was a baby and we all lived in the same house. PJ was so proud to have a new nephew, and the bond between them was very strong. I think the photograph captures perfectly all the love that my beautiful brother gave to his family.
Discussion
18 comments for “A beautiful darkness”
Post a comment
Reading about your calm and satisfying last hours with your brother makes me feel peaceful too. I’m glad it went so well. It is a profound thing to be with someone when their spirit passes on. I’ve never seen or felt the passing, but I’ve been very aware of the difference.
Thank you.
Awww, Tess, my heart is throbbing. Beautiful words, thank you so much for sharing. I can feel the candlelight coming through these words. And thanks for posting this beautiful picture of your bro
Tess, this was so heartfelt and beautiful. My own heart feels full and there are tears in my eyes at the beauty of these words. Thank you so much for sharing this with us.
What a wonderful and tender moment you have given your readers. My heart is with you as you journey through your grief.
Your brother truly was blessed to have such a caring, devoted sister.
Thank you for sharing these moments with us. This story is a gift. So beautifully and lovingly told.
Tess, Thank you for sharing your wonderful thoughts about PJ and for realizing that we would want to know of this huge marker in your life story. You and he were both blessed to be able to share those last peaceful moments together. The picture you attached to this post is just beautiful.
xoxoxo
[...] this week, even on dull, cold days. Because of these bloggers who wrote such courageous, beautiful, loving posts last week, I know I’m going to try to be a brighter [...]
Thank you all for your comments here, it seemed important to me to try to articulate those experiences. It’s a strange thing, blogging, isn’t it? So personal and yet in other ways so anonymous.
A beautiful photo, and a beautiful remembrance. Peace, friend.
For some reason I wasn’t able to comment the other day, but just wanted you to know this was beautiful and the photo is stunning. What a gift of a life. There is a little something heading across the Atlantic to you.
Towanda, Christine, thank you. And Christine, I think your phrase is absolutely right. A gift of a life.
A moving tribute—he was fortunate to have had such a loving sister, and you were fortunate to have had him to love.
Tess, I’m sorry to be late in offering my comment. I wanted to thank you for such a beautiful, touching, moving description of your brother’s last hours on this plane of existence. It reminds me of my own brother’s last hours of physical life. He had cancer (prostate cancer that spread to the bones), but despite being heavily sedated he managed to work himself into the “Lion Position” that Buddhist practitioners of the particular Tibetan school to which my brother adhered before he passed away. The impact of being close to one of these special souls as they make the transition to the next life can be extraordinary, even for those who don’t believe that there is anything transcendent.
I hope you won’t mind if I end with a quotation from the writings of Bahá’u'lláh:
‘Know thou that every hearing ear, if kept pure and undefiled, must, at all times and from every direction, hearken to the voice that uttereth these holy words: “Verily, we are God’s, and to Him shall we return.” The mysteries of man’s physical death and of his return have not been divulged, and still remain unread. By the righteousness of God! Were they to be revealed, they would evoke such fear and sorrow that some would perish, while others would be so filled with gladness as to wish for death, and beseech, with unceasing longing, the one true God—exalted be His glory—to hasten their end.
‘Death proffereth unto every confident believer the cup that is life indeed. It bestoweth joy, and is the bearer of gladness. It conferreth the gift of everlasting life.’
I feel privileged to have been allowed to share those quiet, dark moments with your brother and you as his soul passed into God’s embrace. The photo you shared clearly shows his loving nature and your posting reveals yours. God gave you to one another as a blessing that death does not take away. Peace.
Peace Tess
My deepest condolences at this time for you and your family. May God grant you all ‘peace beyond understanding’.
It’s a lovely photograph. Allah bless your brother.
Abdur Rahman
I feel really blessed to read all these comments and know that you are thinking of us all. Barney, your story of your own brother and your quote from Bahá’u’lláh are very moving.
a beautiful darkness, indeed! i have visited this post a couple of times now and words seem insufficient for response…the picture truly speaks volumes!!! peace to you, friend!