Monday, February 25, 2013

How Facebook has helped my life.

I've been staring at this page for a while, writing, then erasing.  Writing again, erasing more.  How do I find the positive about chronic pain and some pretty serious depression?  Do I write about it at all?


Well what the hell, why not.  After all, there's a delete button if you don't like the topic, right?  Ah, the beauty of the internet.


I recently read an article by a Lupus sufferer that describes her support network as "friends in the box" -- the box, of course, being the computer.  Stephanie Kennedy says this at the end of her article:



My friends live in a box.  
You can call it a computer.  
I call it a lifeline.



This is so, so so true for me.


I have very few friends who live nearby.  I can't be counted on to make it to get-togethers -- in fact, I missed a much-anticipated book club meeting on Saturday because I flat out could not get out of the bed.  I often have to text a parent or teacher at Zack's school because I need to take pain medicine that keeps me from being able to drive the five minutes to pick him up.  It's humbling and humiliating.  I feel like a burden to my family and to these friends.  I often wonder what good do I do for them?  

This is what "everything hurts" looks like.  Sad, but otherwise I look normal, right?


Online, though, there aren't play dates or shopping trips I have to cancel because I hurt too much to move or I have yet another doctor's appointment.  People are on Facebook, though, all hours of the day and night, all over the world.  I have a network of friends who have their own illnesses and problems, and thankfully we're able to share with each other openly and help each other limp along.


Facebook is where I've connected with people and learned about alternative treatments, doctors, and clinics.  But connecting online isn't just about finding a shoulder to cry on.  I can also, in two seconds, post a funny photo or status, while in real life I'm not able to answer the phone.  It makes me feel more human to have this outlet, to post random things, click "Like" to a friend's status, or just read what everyone is up to.  




Facebook has let me feel a little more "in the world", 
even though I'm lying in bed.


Facebook has also helped me maintain a sense of self that can easily be lost when you're in chronic pain or dealing with depression.  Through chat or messages, I'm able to help someone by lending a virtual ear.  Feeling useful and needed is all that's ever mattered to me, really, and just because I feel like I've been hit by a truck doesn't mean I can't be empathetic and spend time typing out a message while I lie in bed waiting for pain meds to kick in.




Of course, this doesn't mean that I don't want or don't need friends I can visit and see.  I actually desperately DO.  I just feel that because pain occupies my life, I'm more of a pain in the tush to everyone around me.  I feel so very lucky to be in the age of Facebook, because without this outlet, this way to connect with people, I'd be in pretty bad shape -- no two ways about it.  Believe me, when I'm able to get up and about, I do.  I haven't let Facebook turn me into a hermit, and I don't think I have a distorted view of friendship because of it.  Not at all.


Facebook may not be for everyone, but for me, it's been saving my sanity.


Thank you to all my "pain pals".  Here's to living life, even if it's just online (for now)!




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Lori Anderson creates jewelry and bead kits as well as collaborative mixed media art with her son, Zack.  Visit her shops by clicking here.  She is also the creator of the Bead Soup Blog Party®   and author of the book Bead Soup.

57 comments:

  1. Great post Lori! I can totally relate, I have not been a good friend to my local peeps for several years due to all the appts for my daughter. I rely heavily on the online community, for many of the same reasons you do.

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  2. You always seem to find a way to express things in such a way that I feel like you've read my mind, Lori. Every single thing you've said, I feel. ((((((Lori))))))) You do so much good, you have no idea.

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  3. I think BFF's can be FBF's... can't they? Glad you're finding solace with your friends in the box! Be well ~~T

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  4. I hope we meet one day, Lori. Because you are such an amazing person, so brave, so strong, even when you don't feel like you are. Thank you for being you, and sharing so much of yourself. For being brace enough to tell the world, "know what? Nobody's perfect and sometimes it sucks, but that's ok." Thank you for saying it's ok to admit when something hurts, even when the signs aren't obvious and we hide it well. Even when it's not always a physical pain.
    Love to you and your family.

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  5. I'm sure that no one sees you as a burden. That's just misplaced guilt speaking. You hold yourself to very high and exacting standards so, it's understandable that you view yourself as not doing all that you'd like for family and friends. But you must remember that unless you've heard those words come from their lips--doubt that's going to happen--it's just your own fears talking.

    Your posts about your family make it very clear that you're a good mom and wife. I don't think you need to worry. Keep taking care of yourself so that you're there on- & offline for those who love you!

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    1. Thank you. You're right....I put those thoughts in my head although I would never feel that way about someone else. It's very easy to talk down to myself. Growing up, any ailments were generally poo-poo'd as a "suck it up"situation....until it was too late and I was hospitalized several times for things that, had they bothered to care for me, could have been avoided. Luckily, friends are more patient than my parents, and my husband is a saint.

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  6. Oh Lori, totally "like"! And I think we are all blessed to live in the online-century!

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  7. So glad you do keep posting. We are here for you as you have been there for many of us. Take care - hugs.

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  8. Just getting to know you online I know that you'd never be a burden. If you think about it - would you think someone else was a burden if they were in pain and couldn't always meet face to face?

    It's nice to read how FB has been such a positive outlet for you, as I think in the last year it seemed like a lot of negative out there. If we remember that being friends on FB isn't all that different than face to face we'd probably be enjoying all the relationships more.

    Long winded comment to say that your post touched a spot on me today that reached beyond the obvious. : )

    I am sorry you have to turn to FB, because you are not able to get around like you used to, but I am also glad to have gotten to know you since otherwise we never would've met!

    Hugs.

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  9. Hey there, I have to admit I don't visit Facebook as much as I would like, but I do like visiting blogs for a longer conversation. My online friends talk to me more than my friends that live within 2 miles of me.

    I can't imagine a life of pain, but I'm sure your family does not hold it against you. They love you and probably hurt right along with you. Go easy on yourself and remember all the times you've done something for your family even though you were in pain. Now that's love!

    Take care my friend.

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  10. I had another thought... maybe the "box" of friends is a Tool Box! ~~T

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  11. No matter whether we are face to face or in a box friends, you could not ask for a more understanding and there for you friend.

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  12. you help so many people with your openess! and your kind spirit speaks volumes! love you Lori!!!!!

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  13. wow. I can't believe how well you put this into words... You are a gifted writer. Thank you for sharing your heart with us. I totally get it!
    Pain is such a hard thing to live with constantly every day... I don't know how to express it.
    Bless you, my friend. You touched me today.

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  14. Lori, I'm so glad you have the internet as an outlet! I've been where you are many times, depressed and in pain, and online friendships can be such a live saver.

    I love that even though you're dealing with some nasty health-related stuff, you still find time to support other people. It really helped me to chat with you about my mother this past December. You're a wonderful, compassionate person. <3

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  15. Hi Lori how true how true. My husband and I were just talking about all the wonderful people I know via cyber space. I don't "do" FB but my blogging circle and life long, world wide "box" friends are more than I could have ever asked for. You know I share my body with lupus and the last few years it has been trying to take me down. With out the love and caring of all the people I come across via the "box" it would be so much more difficult to fight the day to day battles.
    I have a candle of healing energy going for you.
    And hey..... we are all in the same box right????
    Hugs
    Nicole/Beadwright

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  16. Totally agree, while I don't struggle with pain, we moved 6 years ago to an area that has a tendency to be clique-ish and not that open to outsiders. Its why I started my blog, to keep in touch with the people we no longer lived near. I never realized how many friends I would make "in the box." Couldn't make it without them!

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  17. Amen, Sister! Thanks for being all that you are to me, and being there anytime, always. After all, without the World Wide Weird, we would have probably never connected! Love you!

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  18. Lori, you do so much for everyone with your blog and bead soup activities. I don't know how you manage to do it all. I am sorry that you have medical issues and I pray that soon you will find comfort. Always remember - we are here for you so ask and you shall receive. Hugs, Sally

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  19. I can relate to all you say and although I am able to control my pain with medication (mostly), I can understand not being able to get out of bed. I live a isolated life and without the internet, I don't know where I would have been. I love my "friends in a box" too. :) Also please don't stop posting these kinds of posts. You have touched my heart on so many occassions. Sometimes it is just what I needed that day.

    Bead Soup Mix

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  20. Thanks for sharing, Lori, I always enjoy reading your blog.

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  21. Oh, sweet Lori, I can't even begin to tell you how much you've enriched my life. How much you've helped me through the hard times. You are one of the kindest and most generous people I've been lucky enough to know. I know the pain and disability makes you feel like a burden. And I know first hand how that feels. But your beautiful spirit shines through and that is a gift to your family and to all of us out here in the 'box.' Hugs

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  22. Oh my sweet friend! You have been such a blessing to me, you really have no idea. I know I wouldn't have the connections and friendships online that I am blessed with if you had not entered my life.
    I don't know what it means to live with chronic pain, so I can't relate, but I can listen. Always here for you. Much hugs and love!

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  23. ~to write from your heart is the bravest thing one can do...to open up and allow others a glimpse into your life...for us to read a piece of what is really going...you are allowing us to know you just a little more...to have a better understanding on what we can do to help lift your spirits and ease your pain through the gift of friendship and the power of words...

    a few years ago i fell ill and was hospitalized...i too pulled away from my normal day to day and those who surrounded me...i think it is a normal process of emotions to feel as if we are being a burden...for me it was the first time i finally accepted it was ok to ask for help and that people really did want to help...they were not just asking for the sake of trying to be nice...they genuinely wanted to be there to do what they could...and once i got over that it really was comforting to know and feel such...sending much love and healing wishes and blessings this day and all those that come forth.

    though you can not see most of us here...we are real and so to are our words~

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  24. Lori, you're such a love! Thank you for putting my thoughts into words. I, too, struggle with exhaustion and unseen pain. Nobody knows unless they go through it. Blessings to you. Thank God for putting you and the Bead Soup community in my life. You've been a lifesaver. Hugs, diana

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  25. Lori, you're such a love! Thank you for putting my thoughts into words. I, too, struggle with exhaustion and unseen pain. Nobody knows unless they go through it. Blessings to you. Thank God for putting you and the Bead Soup community in my life. You've been a lifesaver. Hugs, diana

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  26. H Lori,

    I have been on that end and I totally understand what you are saying. For almost two years internet kept me away from going totally insane.

    On the other hand, for few months now I have been feeling so much better that even I was able to leave ALL my meds!! That was such an achievement!!
    But there is a downside... nowadays I don't find time to sit in front of the computer or work on my jewellery as my main job and my two girls (2 and 4 years old) and keeping the house in order, cooking and all the rest take all of my time.

    I am trying to get back in track but I can only hope!!

    Don't get me wrong i am loving being able to resume my duties as mother and wife.

    Hang on as I am sure better days will come for you.

    big hugs.

    Noemí (Fuego, metal y color)

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  27. I SOOOO understand!! ~KM

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  28. I understand Lori, I have only 1 sort of local friend, it's hard to meet people when working from home and moving to a community thousands of miles from my home. I'm also a very private person and I don't open up much on FB either. However, I know if I need to, people will be there. I wish I had a magic wand to make all your pain go away (my gallstones too). xo

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  29. Lori,
    I felt like I was reading ME.

    I have Chronic Fatigue but it shows up as dizzy, nausea and cotton in between my ears. I have trouble focusing or walking when it shows up. I almost fainted on bread in the grocery store a few days ago.

    Last week I finally stepped down from helping in my son's class because I had to keep cancelling on the teacher. I was getting to the point where I was having anxiety ALL week about whether or not I would feel well enough to work in his class. I don't know if I'm going to feel dizzy or sick because it hits out of the blue and can stay for minutes, days or hours and can disappear just as fast. I have felt so much guilt about not being able to just show up because I can't control my body.
    All of my friends live in this box. Facebook is an absolute source of nourishment for me as well. One thing I notice I crave from time to time is to be seen. On here I may not be physically seen but I am no longer invisible.

    When I can't leave the house because I feel like crap I can post a bit online. I find I can do jewelry when I feel sick but I am not grounded enough to be able to handle conversations in person. This box of wires is a lifeline for sure.

    I was feeling really lonesome a few weeks ago and I decided to scout out how to meet other people that do beads. Your Bead Soup was the key that opened a whole new world to me. I had no idea all of these women were on here blogging and sharing about BEADS! I joined bead soup as my first venture and you introduced me to my bead buddy Staci Louise. I have had such rich conversations with her through this box.

    I thank you humbly and offer you a great big hug. XXX (<That's a hug, not an adult video innuendo.)

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  30. Thank you for writing this. So many people don't understand. It is too hard to explain sometimes so a lot of us just don't say anything. I try to explain to my family, but they don't even understand, I feel like they don't get that it is constant pain even if I am functioning 'normally'. Thank you for all your work, it means so much to us all. Keep your chin up and know there are a lot of us out here that look up to you.

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  31. Mornin' Lori!!! First off I agree with who ever said you could never be a burden!!! And then there is all the help you give everybody, including me!!! You are one of the most caring and wonderful people I have every been Blessed to not meet...LOL You are funny and sweet and brave and just plain wonderful!! I have changed a lot and for the better since having been blessed with meeting you!!

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  32. Hi Lori, I very glad to hear the your facebook friends help you deal with the pain. I wish I was there to physically help by that's not possible. I know how easy it is to feel like a burden but when you said "I often wonder what good do I do for them? " you need to look at it through fresh eyes. Think of all the days creating with Zack and the smiles you show us on his face tell the story of what you have given him. Just because you are hurting now doesn't make Rick love you less. You have enriched his live too and shared his burdens too. You have helped and encouraged so many of us followers without even knowing how much you mean to us. I started my blog so I could participate in your BSBP. Because I did that a jewelry supply company asked me to join their design team for the Tucson bead show. None of this would have happened with out you. You write openly and honestly about your life and that is so refreshing and why we all look up to you. I'm sending a hug and hoping your pain passes very soon.

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  33. It's great to find the positive side of every thing!

    Just wanted to say thanks God that you're able to connect to the net,and meet people on FB or other sites...that you -and I- are able to see,type,understand,read,feel and breath.......others can't! and it really hurts to think about them!

    I like your post,though I was never a fan of technology!

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  34. Lori, i so appreciate your honesty! And tho my pain is not quite as devastating as yours, i can usually make it out of bed, even tho i dont do much if i do, fb has become very much the same for me .
    Thank you for sharing!

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  35. Lori, i so appreciate your honesty! And tho my pain is not quite as devastating as yours, i can usually make it out of bed, even tho i dont do much if i do, fb has become very much the same for me .
    Thank you for sharing!

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  36. Every time you write a post like this it makes me realize just how MUCH we have in common and how MUCH we think alike.

    There's no way I can portray how much I understand and agree with this post.

    We semi-sorta joke around the house that if my computer went down, that would be the end of my world because it kind of really WOULD be!

    I probably have more 'box' friends than real life friends actually.

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  37. I don't make a big deal about my fibro because I was able to work out an accommodation with my employer so that I can work from home. I have found and going out on a day that is cold and wet causes me to be in a lot of pain and pretty much crippled up for a couple days. Because of this I rarely leave my home except for things that I have to do such as grocery shopping (my hubby used to do it but his fibro has gotten to where he can't walk). I do have my support network locally but I don't get to see them as much as I would like due to everyone's health.

    What keeps me sane are the friends that I have met through blogging and through facebook. If I have an issue I can bring it to them for a fresh outlook and I can always count on a smile. I have made some good friends through both FB and your blog hops.

    And never think of yourself as a burden. You are a wonderful kind and giving woman. Would you turn away a friend that has the same issues that you do? I really rather doubt it. So give your friends a chance. After all, if they are your friends then they treasure you for you. And part of the package of you is some health issues which we all gladly accept.

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  38. Anonymous3:13 PM

    My grown-up daughter has had ME/CFS since she was 13, so I've been alongside someone with a similar condition. Personally had cancer hanging over me since brain tumour found in 1975; chronic pain-killers included I'm on 40+ tablets a day. But hey - we're here and it's so good to know that someone who only knows you through Facebook cares enough to comment on your Posts. Keep smiling Lori - even when the smile's only in your heart and not on the outside.

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  39. When I started my first Etsy shop, I was blown away by the online art community I somehow found. It became a lifeline to me when I was dealing with depression, and in a city I didn't want to be in. I was desperate for the connection with fellow artists that I had in college that I couldn't find where I was living.

    So, even though it's slightly different from what you're talking about, it's exactly the same. I absolutely get where you're coming from, Miss Lori, and I'm grateful to have met you!

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  40. The eyes truly are the window to the soul and your eyes tell quite the story! I've only had minimal interaction with you via the bead soup group on FB but I think you are an amazing person. Your accomplishments are inspiring, your dedication of activity and interaction with your following and fans is awesome! The things you are capable of doing whilst all the time feeling the things you feel is motivational!! I think there is a LARGE amount of us who suffer with SOME sort of daily ailment anywhere from moderate to severe, but you Lori are like the ring leader! You set an example of how these things don't have to define what you do, they are just a part of who you are, and it is all okay! Your willingness to expose your vulnerability lets us all know its ALRIGHT to break down, and not be at our best, when need be! I watch the way you handle things on the BSBP group and you my dear are definitely one of a kind with a heart of gold; its no WONDER you have the support group you do! :-)

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  41. Thank you for putting into words my exact feelings. I too suffer from chronic pain and depression, and look " normal" for all practical purposes. Facebook has been my lifeline for a few years now and I don't know what I would do if I couldn't reach out or be reached by this amazing program. Just about the time I'm sure no one understands someone like you posts something so profound it is astonishing. Thank you does not seem like enough but....thank you! Beccy

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  42. So beautifully written and affirming!

    I completely admire your honesty. I am so terrified to say, "I leave my home for the doctor, and work from my bed where I hang out with a wonderful little dog who keeps me company." We are just so expected to be "high functioning" in order to be successful women, or good moms, caring grandmoms. You make me feel brave & proud of who I am.
    Facebook is a gift --"pain pals" -- that's genius, Lori!

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  43. You are not a burden to your family or your friends. You are a gift. Why? Because your honesty gives us all strength. Why? Because your beauty gives us all beauty. Why? Because your amazing ability to reach out gathers us in, and then we are all surrounded with love, due to YOU. We all thank you for this, especially me, jean xox

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  44. Lori you are a wonderful woman and I am so sorry about the pain you live with. Like everyone else is say, you couldnt be a burden. You also touched me with your writing, being limited by pain is the worst, you want to do things that your body just wont alow you. Keep up the positive out looks and reaching out to people. I can tell from all these peoples post and the blog party you host that you are a very special person, and a very real person I might add. Keep being real, your awesome!

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  45. I feel your pain and I love facebook too.

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  46. I so feel you, I have chronic back pain and it's so hard at times, you just feel useless and agitated and the smallest things. Your writing is beautiful and I really love reading your posts!

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  47. Great post about a subject I am also very well versed in...
    much love and pain free days to you Lori and thanks for always keeping me connected to the bead world...

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  48. I love this post so much.

    Without Facebook, I think I would be a recluse. With my schedule, single parenting, sad days...sometimes, well most times I can't get out.

    I have (or I hope) I am a great online friend.

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  49. Very well expressed Lori. With such a busy life these days, online friends are the ones you connect with more. Even those friends who live close by talk to us through email and FB more than meeting in person or calling. For me, through you and your bead soup parties, I have discovered another world of friends whom I wouldn't have ever met if there was no blogging/FB/Internet. I wish you lots of love, happiness and a good health. Take care!

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  50. Wow you are an amazing woman ... and so beautiful. You do matter to me and many other bloggers out here on the www. Thank you for being you.

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  51. You have such an amazing way of expressing yourself with words...I'm sorry your going through all this crap...as u know I share a life of sever chronic pain too...and honestly idk what I would do without my "box" of friends....thanks as always for sharing your truth...hugs Miss Lori...xox miss you...

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  52. Sending love and empathy. From one artist in pain to another. Keep smiling, keep looking forward.

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