Total Loss of Independence

I can’t really read this screen to type properly.   I had to zoom in as far as possible and close one eye because my eyesight is horrible with both. Thus the need for my blog posts to be heavily edited by “Eli the Pirate” and all members of my family. So, what you are reading is a team effort. Go Team Eli!! When I get up from the table I am watched and held up until my chariot (wheel chair) appears behind me and I safely fall aboard. I get annoyed by this constant supervision, but I guess I need it. I should also feel lucky to have family members who care so much about me. Last week I had a walker, which I liked better than the chariot because it gave me a lot more independence. I was able to get out of the chariot and feed the swans and flamingos at the park.   However I broke my “toy” during one of my midnight trips to the bathroom or to get my morning pills. So, no walker on our family trip down south to Pucon. BOOOOOO!

What does it feel like to be thirty-five and lose all of your independence? Think of my post about hospital jail and times it by three. Most of the time I feel like a caged fox and I whine and make funny noises to show I am displeased. My family shushes me, but mainly because I am very loud and they don’t want to draw attention to us. Well, they don’t have to worry because the simple fact that I’m in a wheelchair draws attention from everyone. Occasionally there has been laughter; I know that people are laughing at me or the sight of a seven-foot tall man hunched over, pushing me along wearing my cow hat.


My family is doing their best to take care of me, but many of my usual mental activities are difficult to deal with. So is my defiant behavior, as I have definitely earned the title of #nastywoman with my words. I guess I must have gotten a lot worse because every time I move, someone steps out of the shadows to lend a hand to help me go anywhere. Except for sleeping, I am not allowed to be by myself. I am having a lot of trouble typing this blog; I struggle to find the right words on my crossword puzzles and I have a really hard time holding my head up to do the jigsaw puzzles, but I do these things anyway because I used to enjoy them and I hope to enjoy them again. Right now I just watch my fingers shake and drop all the puzzle pieces on the ground. The views of Volcán Villarica from the large windowpanes in the living room were almost grand enough to hold my gaze, but sadly they did not. Jon and I had driven down to the Lake District a few years ago before, but the rest of the family had not. So my wonderful husband and mom braved the winter wind and drove us home with leaves and sticks, and mom experienced her first thermal hot springs as if it were our own series of bathtubs. We ate some good kuchen ( A German coffee cake/cheesecake with fruit or nuts or crumble) and warmed ourselves in front of the wood-burning fire.

  1. The cancer is taking hold rapidly, but I am not so gone yet that I can’t hear. I can hear my loved ones talking about me, and I don’t like it. My speech has deteriorated

(even though everyone says its gotten better. My new voice has totally changed. I can’t sing a word and I sound like Minnie Mouse in slow motion. I need to have someone take me to and from the bathroom, to and from the kitchen for a drink of water in the middle of the night, and to and from the closet in the morning to pick out cotton underwear, a bra, bra cup due to my mastectomy, compression socks to ease the pain of the swelling in my legs, and a scarf and hat so I look relatively normal in public.

  1. If you’ve ever lost the ability to do these things yourself, it is really tough.   No matter how nice the view, it is demeaning to have your husband run a bath for you, wash your hair, and dress you.  It is humiliating to have your mom and younger sister cart you to a meal in your “chariot”. I know what my “chariot” is, and the euphemism is no longer fun. It just makes me feel worse. I look in the mirror on and I have no idea who that person is. But then I look behind me, squinting because of all the light. I think about the people who love me, no matter how handicapped I have become.

Thank you to everyone for all your sacrifices and especially to my family for coming down to South America and having one last trip with me. I’ll never forget it. Thank you to Jon and Meaghan for throwing my first surprise birthday party. Thank you to my Chilean friends for celebrating my birthday a month and a half early. We got to see each other before you went off on your own winter/summer trips. (I still can’t get used to July falling in the middle of winter…) I’m not saying goodbye here, but if we didn’t have a special moment to say goodbye, I will remember our precious memories forever.


Add Yours
  1. Carolina

    You write beautiful! I can know what you are go ing through, i went to that with my son. And am aire your Mom sister and Jon are happy yo enjoy every Minute no mater how you look, that doesnt matter they love you anyway.
    Am so happy to hear you went yo the south. Great place yo be.
    Take care, your are in my thoughts and prayers you are a beautiful and strong girtl!!
    Send you all my love and energy!


  2. Mary

    Dear Eli,
    You don’t know me but I feel like I know you. I met Jon at Quincy University. He actually slept on my couch once, (half of his body slept on the couch and the other half, meaning his legs were dangling off the couch). My daughter was friends with Jon, her name is Vicki Johnson Kelly. Anyways, she’s the one who mentioned your blog to me and I’ve been creeping/following you ever since. You have such a great way with words and because of this great blessing, I’ve experienced so much with you. You have experienced and done so much in your life. You have traveled to places I only dream about but I feel like I traveled with you. Thank you. I wish I can give you something in return. I just want you to know that you have touched me and so many others. I will always have you and your family in my prayers. This is one of those times when I can honestly say life is not fair. Fight as long and as hard as you can.
    Mary Johnson


  3. Citlalli Rico

    Dear Eli, I read every post you write, I’ve always admired the way you express your thoughts and feelings and appreciate your efforts to keep us posted.
    Following your travels from Mexico sending much love and light to you, Jon and your family.


  4. Lindsay Symmes

    Your blogs are an inspiration. I know your family love to feel they are able to help even though it is tough to accept that you need it.
    Sending love to you all, Lindsay


  5. Agnes Franklin

    Dear Eli and ghost writers, What a wonderful family you have! Thank you for your bravery. These posts are a precious reminder of how 35 years are nothing, compared with the wisdom you have acquired. I am so sorry for your suffering. Each day I walk in the field with rice paddies and bamboo grove on either side, I send you all light.


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