Beat On

It is parent’s weekend at my sisters school.  She is less than five feet tall, and weighs 265 pounds.  My mother sprains her ankle walking around New H@ven, and later on that evening, ankle aching, sitting across from my sister shoving french fries into her face as fast as she can, she begins to cry.

Everyone is trying as hard as they can.  My sister’s staff person is the sort we send flowers to, and then worry we have not done enough.  A complex system of bribes and threats is in place, promises are made, meetings are held and held and held.  DVD’s are taken away and given back like currency.  We fight against an inexorable current of pretentions and sleeping in late and lies, because that’s what you do. We’re in it for the long haul.

Someone mentions a job putting batteries in plastic packs, and we all recoil.  We have always dreamed of much more, all of us.

I open my email Monday morning, a few hours after speaking to my sister and hearing the usual reassurances, although this time they are mixed in with something real, her uproarious laughter at hearing that Eli has taken all the fingerling potatoes and placed them in the cat’s litter pan.  She loves that story, loves any story about her nephew.

There’s an email forwarded from school, letting us know that Annie has eaten more than a week’s worth of “soft” food specially purchased because of her dental work.  20 yogurts, a stack of frozen dinners, gallons of ice cream, all gone in less than two days.

My mother says, over and over, what I have known for some time.  This isn’t working.  That we can’t be angry at Anne, we have asked too much.  We have put in her a situation where she cannot succeed.  And although I have been preaching this news for over a year now, have known this really, for as long as I can remember, I am not angry at my mother for the time she needed to come to this. She is a good mom.

I AM angry at my sister, although I know all the reasons I shouldn’t be. I think of her glib assurances and then think of 2000 calories of yogurt, soft, sliding down her throat in the span of a morning, and I feel murderous rage. I want to yell at someone, but there’s no one to yell at.

This is the cruel tightrope we have walked for years:  Anne is savvy enough to bask in the magical promise of words fed to her by well meaning  bystanders – of “on my own” and “independent” and “do it myself”, but totally incapable of the will power required to gain those things.  She knows she wants them, desperately, but has no idea how to get them.  And it turns out that can’t be taught, at least not this way.

She doesn’t want to weigh 265 pounds, but given unlimited access to food, she can’t stop eating.

Am I an asshole if I actually use the expression “redefine success”? I feel like it, but when we hear word of a place in Vermont, where jobs are outside, meals are supervised, everyone lives together on a big farm, I can see my sister being forced into a kind of happiness that we can all live with.  It makes no sense, forcing happiness, but given free reign, I believe she would sit in an empty apartment, no friends, watching DVD’s and eating, miserable. I really believe she’d be miserable doing exactly what she would choose to do.  Maybe that’s the lie I tell myself. It doesn’t matter though, she can’t be left to live like this.  At 265 pounds, there are no clothes left for her to wear, even in the big girl store. She cannot walk up stairs. She has trouble breathing and sleeping.

This can’t go on.

Emergency family meeting Number Nine Million is tomorrow.


Maybe in the end only the rest of us will feel better, knowing she’s pulling carrots instead of counting batteries.  Redefining success. Unstacking odds.  Not being asked to pull will power from a place she can’t get to.

But I have to believe.

Gatsby believed in the green light, the orgastic future that year by year recedes before us. It eluded us then, but that’s no matter – tomorrow we will run faster, stretch out our arms further… And one fine morning –

So we beat on, boats against the current, borne back ceaselessly into the past.


17 Responses

  1. Let me know if you need anything, even if it’s just an e-mail friend to talk to. Thinking of you.

  2. hugs

  3. I don’t think redefining success (or saying it) makes you an asshole. From what you’ve said here, I think it makes you a realist with your eyes open. It’s harder than believing that things will get better but in this case, it sounds like the right thing to do. Thinking of you and your family.

  4. Elizabeth, your description is so poignant. My heart just aches for you. I am reminded of something I taught my parenthood education class today, that “discipline” (the word) has its roots in the meaning “to teach.” You sister simply needs another environment. An environment that will teach her positive habits by helping eliminate choices she’s not prepared to handle. It’s not punishment to her, it’s love. Obviously she cannot handle well the situation she is in now. If she were starting fires, you wouldn’t hesitate to intervene, and by eating this way, she’s doing a sort of equivalent dangert that will simply take longer than a fire would. Virtual hugs. If there is anything I can do from here, you need only ask.

    Hard paragraph, new page: I love love love it that Eli saw the resemblance in finglering potatotes and kitty do. Hilarious!

  5. I agree with those who said it above. Success ought ALWAYS be redefined…for your sister, for you, your family, me, everyone. I have found myself in “stuck” situations not all that terribly different from your sister’s. Stuck in ruts, with bad habits, surrounded by temptations that were just too hard to take. It’s ALWAYS ALWAYS ALWAYS taken BIG changes, even if those changes were only mental, to change habits.

    Changing an environment might be JUST what she needs. New faces, new places. No one is doing any favors by letting her live the way she is now. And I feel like this situation is so similar to that with my mother. We had to make some major decisions for her that she was not initially happy with. It took her a long time to realize she is better off with the changes, but she is. And she recognizes it (even in her lapsed mental state) and she appreciates it.

    The VT situation sounds so much better, healthier, happier.

    And worse case scenario, you move Annie to VT, and you re-evaluate. In all honesty, it took us 3-4 moves at different times to get my mother what she needed, when she needed it.

    If you want to talk…please call me or email me. Seriously. I would love to help you with this if you need the help. Good luck, Elizabeth, I know you have a good and kind and decent heart and your family will work this out.

    (Sorry for the long comment.)

  6. thinking of you and annie

  7. Your heart is in the right place.I don’t know a lot about your sister but from what I am reading and some personal experience with a family friend, you and your family are faced with a very tough and fragile decision.

    When this family friend was given the same opportunities things got so out of hand that an intervention was not only necessary, it mandatory. Yes, you want so badly for the person you love to be happy and completely independent. You want them to be able to be successful. You want them to be able to succeed with minimal assistance. What blows big donkey balls is when you are forced to step back and see the situation from a completely non-biased position, and you realize that every effort you have made for a “normal” life for your loved one has been in a way, in vain.

    Everyone has their own definition of success. Each person’s definition will change as their life situations change. It can be redefined. Do what you know will be best for her. Her health is the priority. She can and will adjust to a new life if she knows that she can be healthy and happy. I promise that I will keep you, your sister, and your family in my prayers. If you ever need a shoulder, I’d gladly offer mine.


    p.s. You’re not an asshole. I promise.

  8. Making decisions for a sibling with a disability is tough, and not just in the “I want to do the right thing” kind of way. I have a brother with cerebral palsy and my parents recently decided to move him into a facility for adults (he’s 23). Though he is severely handicapped and will never have the opportunity for “independence,” making decisions for someone else that will affect their happiness is hard. I worry about a time when my parents will no longer be around and the responsibility will be mine and maybe my younger sister’s. I’m the oldest.

    Many people don’t always understand that you are their sibling and not their parent. You grew up with them, you love them, but there is also a tinge of resentment (you didn’t ask for this) and a massive amount of guilty feelings revolving around any frustration you feel.

    I guess it must be harder to have a sibling that is so much higher functioning, to have such a grey area surrounding what they understand and are capable of doing. Anyway, forgive me for the long-winded personal tale, I guess it just struck a nerve for me.

    Good luck with the decision!

  9. Oh, Elizabeth. I’m so sorry. I’m trying to formulate coherent thoughts, but I’m sure they’ll come out wrong, so let me just say that I’m thinking of you, and hoping you figure out something.

    And thanks for writing about it.

  10. It’s unfortunately true that in a lot of situations, being left to make your own decisions without the strong influence of others will lead down a very bad path. What we want most is not always what we need or what is good for us. (Hell, look at smokers.)

    Good luck with these decisions. And don’t forget to take some time for yourself to decompress, or you will drive yourself crazy.

  11. I think that redefining success is exactly what you have to do, isn’t it? If the current situation isn’t working; if your sister isn’t happy, and isn’t healthy, because of the choices she’s made, it must be redefined. And if she can’t, or won’t, do it for herself, then she needs her family’s help.

    Picking carrots in Vermont sounds awesome; it really does. I think that all you can do is give it a shot. And like Tricia said, re-evaluate then.

    You and your family have Annie’s best interests at heart. You’ll do what’s right for her, and help her see that you’re not doing it to punish her, but because you love her.

    Strength and clarity and peace to all of you.

  12. I don’t see anything wrong with using the phrase “redefining success.” Things change. People change. Situations work or don’t work.

    Good luck to you and your family.

  13. Thinking of you!

  14. You know how when you read someone’s innermost blog thoughts and what you have to say pales in comparison and you know it doesn’t express exactly what you want to say? That’s me right now.

    I will say that I’m thinking about you guys. hugs.

  15. Thinking of your family. I think “redefining success” is a constant process. What I thought was success in college is nowhere near what I think is success today. We grow and learn and redefine constantly. Your sister has tried this situation and it will not work for her. Now, your family will probably try another situation for her. I hope it works, but if it doesn’t, you’ll try again. She is so fortunate to have such a loving family that has her best interests at heart.

  16. This is so painful. I think EVERYONE redefines success as life goes on. Everyone re-evaluates and thinks, “What is it that I’m missing? What is it I should get rid of?” It’s just so hard when it’s necessary to do that for someone else. But it IS necessary. I like what Shelly said: you’ve tried, and now you’ll try something else, and if it doesn’t work you’ll try again.

  17. I just came across your blog randomly and I read this while nodding my head, almost through the entire thing. You see – for the last thirteen years (wow, that makes me feel old), I have worked with individuals with developmental disabilities. At first, in the capacity of a sheltered workshop and now as a Host Home Provider – we have a guy in his late 40’s living with us. Has your family ever considered that as an option? His parents live about 10 minutes away, and see him once a month typically – when he goes home for the weekend. Other than that, I help him with decision making regarding his food and I monitor the intake. He’s lost over 100 lbs. now. During the day he still goes to the workshop and then comes home and has his other “family” in us. It might be a good solution for your sister. 🙂

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