Related Posts Plugin for WordPress, Blogger...

Grateful. Ungrateful.

Let me explain…
It was brought to my attention the other day by a very dear loving friend that maybe I might be “misunderstood.” She said that I might want to seem a bit more “grateful.” I asked her what she meant by that. She said that not everyone with ALS has caregivers and that I should act more gracious. She said that she knew our circle of friends understood my humor but that maybe strangers don’t.  Maybe I have some explaining to do. After getting over the initial shock of what she said to me, I thought maybe there was a teeny tiny itty bitty chance that she might be right.

Let me start by saying that I wish I didn’t have caregivers. I don’t want them. I wish I could wake up in the morning, place my feet on the ground, stand up and walk to the kitchen and make my own coffee. Something as simple as that would bring me the greatest joy. Trust me, I don’t think it’s great that I have someone wait on me. This is not living in luxury. It is hell on earth. I would love to do everything for myself. I hate “having caregivers.” I hate needing to have caregivers. She also told me that most people with ALS have their family caring for them. I would love that. I would love to have my mother, father and sister help out. I would love to have my sister here making me laugh. I would love to have my mother here making my favorite cucumber sandwich just the way I like it. I would love to have my mother here decorating and rearranging all of my picture frames. I would love to have my father here to enjoy a glass of wine with. I would love to have my brother here, rest his soul, carrying me in his big strong arms. But they are not here. My true family consists of my husband and my 18-year-old daughter. My husband has to work in order to pay for our lives, obviously. My daughter goes to college. It is not feasible that they take care of me. Therefore, I have to have caregivers.
I love and hate my caregivers. Unless you are in a position where you have been completely dependent physically on another person I’m not sure you can understand what I’m talking about. For example, I have spent the last 44 years doing things my way. We all have. You create your own habits, your own patterns, your own way of doing things. I had to give all of that up. Geez, just now by writing that, I just teared up. I guess I’ve never really said it out loud. I had to give everything up. I had to give up all of my control. Someone else brushes my teeth their way. Someone else washes my hair their way. Someone else does my makeup their way. Someone else even wipes me their way. Front to back! Front to back! That is somehow lost in translation. Maybe people do not understand that I cannot do anything for myself anymore. You start to resent the people that help you, however, I understand it’s not their fault.

Also, to clarify things... Yes, I may have four caregivers but they are not all here at once. They are on rotation. It is impossible to 100% take care of someone for more than a day at a time. You lose your mind. It is called caregiver burnout. It’s like a tagteam over here. One caregiver in, one caregiver out. When I hire the caregivers, I have to explain to them that their job is to “be me.” Being me entails a lot. The caregivers have to do everything that I cannot… which is everything. They need to wash my hair so now they are a hairdresser. They have to dress me so now they are a stylist. They have to move my body so now they are a masseuse. They have to cook my food so now they are a chef. They have to do my makeup so now they are a makeup artist. They have to clean my feeding tube so now they are nurse. They have to control my breathing machine so now they are a respiratory therapist. The list goes on and on. Photographer, florist, driver, manicurist, babysitter, nurse, computer technician, television technician, blah blah blah. On paper, it may sound like I am a princess because I have people doing all of these things for me but it’s because I cannot do it for myself. I cannot even lift up my thumb.
So what am I grateful for? I’ll tell you. My version of grateful might be different than yours. I am grateful that I can breathe today. I am grateful that I didn’t die in my sleep. I am grateful that I don’t have bedsores. I am grateful that I didn’t choke on my own spit. I am grateful that I can speak. I am grateful that I can move my head. I am grateful for my friends. I’m grateful that I don’t have a catheter. I am grateful that my feeding tube is not abscessed today. I am grateful that my diaphragm pacer isn’t painful. I’m grateful that I’m not depressed. I am grateful that no one dropped me today. I am grateful that my husband has a wife for another day. I am grateful that my daughter has her mother for another day.

So yes, I am “grateful” that I have a caregiver but it is not by choice. I always laugh when I think about what I would do if I had my health back. Do you know what I would do? The first thing I would do would  be fire all the caregivers, get in a car by myself and drive and drive and drive and listen to the loudest music and sing at the top of my lungs ALONE. I just want to be alone. Imagine if you can never again be alone. I can’t be left alone for even five minutes. My breathing machine could fail, I might choke, my legs might become numb, I might stop breathing, etc. etc. etc. I am scared all day long that this might be my last day. My caregivers are here to prevent that but I feel like a helpless stupid blob and I choose to take it out on them. Just kidding.
Grateful? Yes. Ungrateful? Yes. Yes to both. I hope everyone understands.

"Piglet noticed that even though he had a Very Small Heart, it could hold a rather large amount of Gratitude.”
A.A. Milne, Winnie-the-Pooh


  1. I had a friend with ALS, and know how much effort on so many people's parts it took to care for her. She appreciated their help the same way you do... good and bad, up and down.

    In Baltimore, we know more about ALS than a lot of people might, because of our revered Cal Ripken, Jr. who broke Lou Gehrig's all-time playing record in baseball, and who raised millions for ALS research as he did so. Johns Hopkins Hospital has an excellent center for ALS research and when our friend was struggling with it, we worked hard to raise money for them.

    I love your blog and your writing and your personal insight into this disease.

  2. Wow. I disagree with your friend. It never occurred to me that you should seem "more grateful". I absolutely love that your blog is about things you find beautiful. That you see beauty in this world where things like ALS happen to people is totally amazing and deeply touching to my soul. Finding your blog is one of the best things, really. Your blog and outlook on life is an inspiration to me. Please continue on. :) :) :)

  3. Holy moly! Really? Ungrateful?? I disagree I am new to your blog, I've been reading for a few weeks. I love your humor and haven't found you to be "ungrateful". I have found you to be direct and honest and not a whiner, if you were, I wouldn't continue to subscribe.
    Keep doing what you're doing, for as long as you can!

  4. Hello my beautiful friend Eleanor....I haven't posted a comment yet to your AMAZING blog but your last post has prompted me to do so. I too disagree with your friend. You are my hero and you don't need to explain yourself. I've known you now for 30 years and I don't think we ever cared much when we have been misunderstood. :)

    If someone doesn't get you or is offended....then so sorry....NOT!

    I love you so much. Your humor has always been brilliant and different and I think it is really helping you deal with ALS. Your attitude and perspective on life is inspiring people that are sick AND healthy. Gratitude is also something that you have never lacked and you've spoken of it often in your various blogs.

    Geez...don't stop being you...period.

    What's next? Having to explaining why your hair and eyes are so damn beautiful? Why you have innate charm, class, beauty, intelligence, etc...? Ugh!

    Excuse me......sir.......can you please tell Ellie's friend to go piss off!!!!

    Love you forever.

  5. Hi Ellie, I just found your blog through Heather, and honestly I think you and your point of view are a breath of fresh air! I love your honesty, and it sincerely never occurred to me for a second that you were ungrateful. The fact that you've obviously kept your sense of humor given all of your struggles is hugely impressive. Kudos to you! Sending many well wishes from Seattle...xx

  6. I'm so glad to see that others disagree with your friend. I think she's way off base here, although I'm sure she is dear and lovely, as you've described her. I felt irritated on your behalf when I first read this post, which was forwarded to me by my doctor in San Francisco, but I am placated by the good responses you've received. :) I was diagnosed with ALS two years ago, and I'm making my way through life the same way you are. Of course I'm grateful for the help I have. But would I rather I didn't need it? Um, obviously. Admitting that doesn't make you ungrateful, nor does feeling angry, sad or snarky about your situation. I certainly do understand.

    1. Sarah, I'm so sorry about your ALS diagnosis. Yup, sucks. Would love to talk to you more. Will you email me your email address? XO XO

  7. Hi Ellie, I am still making my way through all of your beautiful, rich, rich blogs. There is not one ounce of you that says "I am ungrateful". You, just by observing life in all its glorious forms, are extending gratitude. Sometimes I think that people project onto others what they themselves feel. Use your abundant Grace (and no I don't think it a coincidence you gave birth to Grace), to be above the hurtful chatter. You personify Grace on all levels and enrich so many lives just by being you. Thank you. Thank you . Thank you. xob

    1. Dear Brenda, thank you for all your kind words. Thank you for taking the time to read all of my blogs. Makes me smile. XO XO

  8. WE GET YOU..........NO need to explain.Which you did BEAUTIFULLY!I sent you an email yesterday..........I hope you received it.XOX

  9. I just 'found' you yesterday, I think you are amazing. I have read and reread some posts. I love the one on parenting. You are so strong. I just returned from my first trip to Paris. I like the stories on the City of Light, but most of all I like the personal posts, I am going to be a better, kinder, more loving person. It is possible to improve at age 71, right? This may be im my hubbie's name, having issues with goggle acct.

  10. Just found you yesterday through Preppy Empty Nester and she is're amazing. Make no excuses for what you write. You owe nobody on this earth an explanation! We get it! Write from your heart and keep doing this amazing journey with the grace and good cheer we all love.

  11. Ellie, I"m new to your blog and reading through backwards. I had to pause and comment here because I think your friend, however well intentioned is way of base. First, you owe no one an explanation for your feelings - whatever they are at any given minute. You are honest and kind and wonderful enough to take us on this journey with you. From reading your blog, I wish we were friends. I think this is a common reaction. And that's not how people react to ungrateful brats. If you were ungrateful, however, you would be perfectly entitled to be so. You don't owe us anything. My daughter was given a serious diagnosis and we went through many years of hell. I grieved and it was a loss of so many things, and a trial by fire of all my relationships. Not many survived, and the ones which did did not do so unscathed. Of course things could have been worse for us. Much, much worse. I was conscious of this but it didn't stop the grief which was very real and very legitimate. I don't think I needed to explain this to anyone but apparently this was not so. In the end I cut my losses. I came out a different person with different priorities. I was judged but in the end no one can understand my or your journey, all they can do is support us. And that means keeping "helpful" advice to themselves sometimes. I wish people would check themselves. But, you are so very gracious towards your friends. They're lucky to have you. Wishing you many many joys and good days.