Yesterday we endured a three hour round trip to the Emory Clinic in order for them to tell me what I already know: I am beginning to circle the drain.
My respiratory function - 50% on October 5th has now dropped to a mere 23%. This is, to use the words of Captain Obvious, "Not Good." This illness has raged through me like a forest fire. It is burning me out. I have two choices at this point: to have them put a hole in my trachea and ventilate me until I am completely locked in, or the power goes out - whichever comes first; or to just place me in the comforting hands of hospice and the first option is not only of no interest to me but is probably something I'm too late for.
So the bottom line is that, as of yesterday afternoon I am now under hospice care. Some people see that word and are terrified of it. And, in a certain way it does mean I am getting close to the cliff that we all eventually must march towards. But I see hospice as a way to soothe what remains of my journey. I only wish that our mother had been able to avail herself of its services.
My world has become circumscribed. My appetite is diminished. I take comfort in bedtime and mostly I take comfort in the tender ministrations of my beloved family and the company of my friends.
I'm not in a hurry, mind you but I am a realist and I am preparing myself for the inevitable coda of my life's sweet symphony.
“Depend upon it, Sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.” - Dr. Samuel Johnson
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NAMING CONVENTIONS
When I decided to start this blog - my third! - I had to select an appropriate name for it. I decided on the one you see above, but several...
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Yesterday we endured a three hour round trip to the Emory Clinic in order for them to tell me what I already know: I am beginning to circle ...
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You and your family continue yo dominate my prayers. I am not a gifted word smith but from my heart i say you are loved. And i really hate that you have to go thru this......
ReplyDeleteHugs, hugs and more hugs Steve. And to follow your bold lead, talking right at the elephants in the room - I'm so glad I had the opportunity to spend some lovely final visits with you and the cats and Netflix. I can honestly say I will always remember the Netflix - wink wink. Travel well my friend...
ReplyDeleteI feel so blessed that you took time to see me in July. My heart aches to know of the speed with which this disease is progressing, and for your family and close friends. Your bravery and frankness are just amazing. Thank you for sharing and showing us to know you even better. Thanks for the memories. Love.
ReplyDeleteOh, Steve...you are kind, gentle, and generousof heart. Our lives have been enriched by yours. You will be remembered.
ReplyDeleteSteve, I cannot compose this without getting weepy. You've made this such an adventure for us all, so brave and heartfelt. I am so fortunate to know you and your family. Confession time: I have gone back through as many old Blog d'Elisson posts and saved a few that were especially perfect (they all were, but...) I can't imagine a day will come, when I can't go get me some Krodman wisdom.
ReplyDeleteQuestion - are you going to close any of your blogs? Will Donna keep them going? Selfish question, I know. Just makes me smile to go back a few years and read stuff.
While I can't sit and regale you with my Texas Tales in person, know that Cowtown Pattie will be holding you close.
Per my earlier comment, I just reread this story:
ReplyDeletehttp://likethedew.com/2013/02/09/a-kaddish-for-miss-p/#.W-RxVJNKhPY
Elisson - I’ve rarely commented, but I’ve followed your musings since I came over on a link from Acidman, in what seems like a previous era. I bought your book of 100-word stories and have enjoyed repeated readings of them while - appropriately - on the crapper. Hope that brought you a smile.
ReplyDeleteYour writing has been both funny and touching, depending on your topic. And with this third blog, also inspirational. I hope when I face the inevitable that I can do so with half your dignity and wit.
So enjoy this time as much as you can, and know that I consider you a friend, even though we’ve never met. What an odd world this internet thing has created.
You, my friend, are a personal hero of mine. You and your family have been in my prayers daily. Sending love your way...
ReplyDeleteIt's been a life well lived, wouldn't you say? "Done too soon," as Neil Diamond sang. I'm sorry I can't be there to offer a final hug; all I have to give are these insufficient words. Please know that knowing you has been a privilege. You've lit up the world during your journey upon it; you've touched many lives, including mine. I'm so sorry that this has happened to you, but I know you'll be brave and serene when the time comes to step through the Great Door. The journey never ends, my friend. And the stars beckon.
ReplyDelete.... I have read this a hundred times and I keep slipping between crushing sadness and raging fury..... you have so much more grace than I, sir..... thank you for being my friend....
ReplyDeleteThank you for the joy, entertainment, and humor you have shared with me through the Internet. My prayers are with you and your family
ReplyDeleteJoe (hoosierboy)
This old blogger pal looks forward to when that fabulous Grandbaby is nestled next to your big heart.
ReplyDeleteIn the meantime, I am honored and fortunate to have known your wit, wisdom, and culinary expertise through these many years. I am a proud member of your Colander Regiment, Santa Cruz California Auxillary.
With love and aloha, Grace Davis
Steve, may this time in hospice bring you peace of mind and soul as your body lets all of us down. You've always been a man of faith. This just another part of living and a time of transition. May your strength and resolution bring peace to those you leave behind who will follow you in due time. We will always love you and will support your family in there tears and struggle. Your friend, Panama Jack/Video Jack
ReplyDeleteKnowing you has made me better. And I feel that I do know you. Internet friends can be better than RL friends. You have made me better.
ReplyDeleteWe’ve never met, and I only know you through Donna. I am in awe of your strength and bravery at embracing this inevitable & difficult part of life. You and Donna are in my thoughts and have been for a few weeks now. Praying for continued strength and comfort for you and your family.
ReplyDeleteLove is with you always. I know you know this. I’m pulling some more in ��
ReplyDeleteWishing and praying for miracles for you and your family. Continued strength and comfort to you and lots of love!!
ReplyDeleteSteve King's grandmother used to say "you have to dance the way the music plays." Your symphony, still unfinished, has been beautiful and touching. It has been playful yet passionate, emotional and inspirational. Your dance has been steady, not stepping on too many toes! You have touched many lives and will never be forgotten. Keep dancing. The music should only get sweeter in Gan Eden.
ReplyDeleteSteve, our hearts are breaking for you, Donna and the girls. You continue to be a light to us all, in spite of these horrible circumstances. Your spirit inspires us to do better, care more and love deeper. We are fighting alongside you.
ReplyDeleteI am one of your huge, mostly silent audience.
ReplyDeleteMay you feel the love and admiration of all of us.
I LOVE YOU, CUZ! I miss you and am generating cyber-hugs of immeasurable magnitude. And STILL want to know what the Cherokee Cryptics name stems from. You have been a hero to me since a was a pudgy little brat, both inspired and inspiring, and always a source of laughter from the belly. Not to mention an appreciator of Chicago's very own Jeppson's Malort. LOVE YOU LOVE YOU LOVE YOU XOXOXO
ReplyDeleteI was going to say "what terrible news"--and it is--but if you're looking at this in a positive way, I will too. Know that you're in my thoughts, now and throughout your hospice. Wishing you all the strength and peace. xoxo
ReplyDeleteI've never commented here, but have been a reader for ten or so years...back in the days of the BdE. I have enjoyed every word as you have shared your family, friends, culture, and memories. Your grace and humor in relating your ALS journey has been touching and helpful as I related to my father, who has suffered a stroke. Not the same, but similar in ways. Thanks for your words. You, Dee, and the girls are in my prayers.
ReplyDeleteJust heard about this from other sources. Hope that you are at least in no pain. I will try to figure out how to contact you otherwise.
ReplyDelete