Void if Detached

http://youtu.be/O4XskfT6vNY

I am under hospice care now. My first thought has been “hospice care? At the age of 47? Really? This launch of incredible services which I am only now beginning to understand: A hospital bed has been installed, grab bars, galore.

The furniture has been moved around significantly, thank you friends!)the bathroom, physical and occupational therapy tools as well as welcoming visitors on a careful, stress – free,measured,rotational basis to secure my safety from falling, and to lift spirits.Recently I have been having a recurrent dream that I am standing on the edge of a cliff near the Grand Canyon. Behind me were friends, neighbors,doctors nurses and all of those employed to provide the care necessary to help me perform daily functions like bathing and dressing . There were times that dream becomes very threatening and I feel like all of these wonderful people are simply waiting to throw me over the cliff.,stopwatch in hand.I was initially overwhelmed by what was being offered and didn’t understand it all. This sudden and suspicious invasion of my privacy and the elimination of my time began to become a point of misplaced resentment. But as time
moves on and I begin to understand and harness the generosity and hard work of those involved, I get it. and I am very grateful as well as deeply moved by offers from friends and family to check in on my well-being and on my family as well as my eager stomach!

Many Years ago when my grandmother Ethel was slowly dying from emphysema she, ironically being a nurse years ago who had smoked    9 like so many) in her past , watched her writhe in discomfort trying to pull her thin flowered print nightgown over her weakened body.but most of all, she just wanted to maintain her dignity. Then,Almost until her last breath,which occurred soon after I whispered into her ear grandma, “it’s okay you don’t have to fight anymore,you can let go now.”I had just flown in from Arizona to say my last goodbyes. With the aid standing by I left her apartment and she passed soon thereafter. And another incident this past summer I had a fairly sizable seizure when a friend who had recently cared for her ailing father rushed to the scene and the first thing she did was to help me wash my face with a warm wet washcloth. This act was knowing, loving, and caring and it was the best remedy because it had nothing to do with taking pills in that moment but to restore my dignity and it made a world of difference. ;to try to start up again with a fresh clean face and outlook.all within that one small gesture. Needless to say I have a lot to be grateful for.

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23 Responses to Void if Detached

  1. The kindness, love and support extended to Mark during his torturous, tortuous journey have been and are incredible. Comments such as these (and prior) have provided consolation that is appreciated beyond words. As Mark nears the end of this careening ride, we are more than proud and grateful that he touched the hearts (and funny bones) of so many. If the Reader’s Digest still ran “The Most Unforgettable Character I Ever Met” feature, Mark would certainly be a candidate for inclusion. [Steve and Beverly Green]

  2. Mark,

    So many memories and thoughts are colliding in my head. Thoughts of late nights watching the Greenwood boys in the dorm; of the beer after watching the Greenwood boys in the dorm; of taking the Greenwood boys to Stratton every week (and, yes, I am still skiing in your boots and on your Rossi skis almost two decades later); of skating on the pond and biking on the Greenwood trails. Although distance and time have separated us, you remain a friend. My thoughts are with you. If you are up to it, I may take a trip East.

    John

  3. Terry Sylvester says:

    Hello Mark,from Terry Sylvester in Moldova with the Peace Corps. A story about singing with you was shared,and I felt fortunate to know that smile of yours,and was singing along from here…

  4. epstein jill says:

    Although we have never met I feel very blessed to have read your blog….I have had the same dream of meeting everyone I have ever met on a steep trail on horseback…my favorite dream ever….love to you and focus on the light from your third eye which is very powerful….remember to just breath…

  5. alexandra scarlett says:

    hello mark, old boy, daddy of small girls…..am just now tuning into your blog and wanting to know your story…hangng on your words and images…..knowing you still, even though it has been so long since we all danced so merrily together…..rollicking food and wine and not ever dreaming of how much life could change………….but it has though, hasn’t it??? thinking of you an hannah and elisabis and laura…..those days way back when the children were small………and you today……..praying for your safe journey………..with love from then and now, alexandra

  6. I am so glad that I found your blog! You sincerely and eloquently write what I cannot. I’m 46 and have been fighting grade 3 Ependymomas since July 2011 so I believe we share many similar experiences: I’ve had surgeries, radiations, chemos, and all the grief and confusion that goes with this wild ride. But I am also an eternal optimist, lover of nature and music, and in awe of the unwavering support of family and friends. My left side is also paralyzed and I even have a torn rotator like you. I enjoy and am inspired by your love of nature, music links, poems, Star Wars and Godzilla references. etc. You write the blog that I would if I had your talent. I look forward to more posts. I know you are in Hospice, but if you do choose to continue treatment, I wanted to let you know that I had almost a year of virtually no growth on a chemo called Irinotecan. Good luck and best wishes to you in whatever path you choose. Here is one of the poems that I recite for strength: “All that is gold does not gltter, not all who wander are lost, the old that is strong does not wither, deep roots are not reached by the frost. From the ashes a fire shall be woken, a light from the shadows shall spring, renewed shall be blade that was broken. The crownless again shall be king” J R. R. Tolkien

  7. Dear Mark!
    What an inspiration you are to so many people. We have crossed paths once through Mary Brust and “Jubilee” (HealingWindsVermont and Captain Glen Findholt) and your presence & soulful spirit is rare indeed! As I read and re-read all of the profound thoughts that you so graciously share with us, you are giving each of us a gift Mark. A gift of understanding of what truly is important and a deep appreciation for all that we have no matter where we are in life.

    I had this vision of starting HealingWindsVermont for this very reason. I am hoping that the shear joy of being on the water, being powered by wind and sails in the company of dear friends and loved ones is giving a reprieve from cancer for everyone involved.

    My hope now is that you can close your eyes and feel the Southerly on Lake Champlain and hear the soft waves lap “Jubilee’s” bow as she glides through the water bringing you away from land and to that glorious peaceful feeling of being one with nature.

    Look up. Feel the warmth of the sun and look around in awe of this powerful creation that we live in for this lifetime. There is much to be thankful for, and we at HealingWindsVermont are thankful and honored to have had the opportunity to bring you to that peaceful place. May you return there often as she is always there for you.

    Our thoughts are with you Mark.
    Gratefully, Suzanne & Glen
    HealingWindsVermont.org

  8. Carolyn Olivier says:

    Mark, one doesn’t need to have known you forever to have been the recipient of your generous heart and warmth. Sending love and grateful appreciation that our life’s paths did cross, and that I carry in my own heart the gifts of yours. Best, Carolyn Olivier

  9. Rachel Andrews Damon says:

    Mark – you are exceptional in all ways. I send you love of the most powerful kind. If you are willing or able to consider a visit, please let me know. Love – Rachel

  10. Konstantin von Krusenstiern says:

    Thank you Mark. I am grateful for all you have given so many. Thank you Mark.

  11. Mark, in the relatively short time we spent together this summer sailiing with Mary Brust aboard “Jubilee” I was incredibly impressed with your bravery, commitment and genuine care not so much for your own battle, but for those of others with brain cancer. Of all the people who sailed with us you stand out as most inspiring. Having lost my life partner to GBM in 2013 I have to admit that reading your eloquent essays is sometimes hard for me because it is so close to home. On the other hand, reading your thoughts and observations has become an important element of my own grieving process and I thank you for using your diminishing energy so constructively. The world will long be a better place for your having been in it. Suzanne and I are sending you strength and peace and a hope that we will meet again.

  12. Beth and Ed Nikles and Family says:

    Mark, Ed and I can still see you in our minds’ eyes as a youngster here at the lake. An ever inquisitive, caring, innately funny and fun loving, sharing, mischievous young kid who drew all the others, adults and other kids, all those near you, into your circle, into your light…….for you always shared your true self ever so generously with all those around you. Your parents gave you the gift of wings and soar you have. You have many families….wherever you are or were, you just made another one……beginning with your own birth family, your kids, your extended family, your ever so generously expanding “circle of Friend Families”….and they are everywhere in every rung of the great ladder of your life. You have packed more experiences in your 47 years than anyone else we know and the endless memory making moments you have shared with others…extraordinary! As friends of your parents, we thank you for the remarkable son you are and always have been to you beautiful parents, and for being such a supportive and loving brother to your sister, a path blazing, adventure seeking, life guiding, memory making outstanding father to your daughters…….and a great great friend to so many of your friends throughout the country and beyond.. We have all learned from you, Mark. We continue to learn from you, our dear sweet, brilliant, compassionate, brave, witty, funny, sharing, Twin Lake son, Mark. We love you, big guy! We send our prayers, and good thoughts to you, and just know that we are all holding you in the warmth of the light. We are here for you, your daughters and your parents and your sister!! Love, Beth, Ed, Di, Dave, Ed and Denise. Xoxoxo

  13. Jennifer says:

    As so many other friends have said, thank you for sharing your life and story with us. Your words and insights, your poetic, brave, outlook on life and all the people and connections…it reminds us (me) on a daily basis to embrace every part of the journey… to remember to say thank you for all the little and big things… to remember to tell people you love how big of a gift they are to you… it was so wonderful to know you were at the table near me at March of the Turkeys. The “thank you” string around my wrist was (and is) meant for you… love

  14. Adriana Schmeling Payne says:

    Mark I thank you for the fun and joy and careening rides in that postal jeep — yours is a remarkable spirit. With a heart full of love, Adriana

  15. jodesmm says:

    With the clarity with which you wrote, I see thoughtfulness. With the words you used, I see humor. With the unflappable desire to live, I see bravery. With the appreciation of care, I see love. With the sharing of your deepest fears, I see dignity. Without your posts, I see me, bereft. I will miss your voice.

  16. Annie Guyon says:

    Thank you for this, you are such a gift. xxxooo

    >

  17. jodesmm says:

    With the clarity with which you wrote, I see thoughtfulness. With the words you used, I see humor. With the unflagging desire to live, I see bravery. With the appreciation of care, I see love. With the sharing of your deepest fears, I see dignity. Without your posts, I see me, bereft. I will miss your voice.

  18. Theo Grayson says:

    Embracing this journey with such grace and thoughtful sharing of words and experiences is such a gift to the world. I admire your presence and send love, thoughts and memories of many shared laughs together. With love, Theo and John

  19. Thanks for enriching my life once again with your words and the thoughts, feelings and experiences behind them. With love, Steve

  20. Jean E. Brown says:

    Mark – It’s good to know you‘re in such good hands – I think of you often – love, jean

  21. Nina Ryder says:

    I send you my love Mark. You are the strongest, bravest man I know and full of dignity and grace.

  22. Robin says:

    Mark, I’m happy to hear you are surrounded by good, respectful, loving care providers, and that your heart is open to receive their generosity so well. You are also a gift, to those with you and those of us who know you more or less. My thoughts are with all of you.

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