I am going to post something a little different tonight.<\/p>\n
I have always said that one\u00a0reason\u00a0I\u00a0am\u00a0able to cope with HIBM in the way that I\u00a0do,\u00a0is\u00a0because I am lucky to be surrounded by such a strong support network- family and friends who are there for me in any way I need them to be.<\/p>\n
\nLast week, I met with the rabbis at my preschool\/temple to talk with them about how we can raise awareness and broaden people’s understanding of what it’s like to be disabled, from the preschool level on up. Just before that meeting, I was talking on the phone with one of my dearest, closest\u00a0friends, Gabrielle, about what I\/we would want to communicate to\u00a0people about\u00a0what it\u2019s like for me and others in our community who are disabled.\u00a0Ten\u00a0minutes after we hung up, I received the following email from her, sharing with me what\u00a0she imagined she would say to\u00a0people\u00a0if given the chance to talk about my disease. I\u00a0can\u2019t\u00a0help but share it with a larger audience and after you read it, I think you’ll understand why…<\/p>\n
\u201cI remember one early conversation Jen and I had about her disease.\u00a0 I told her, \u201cI will never be one of those people who tells you \u2018I can\u2019t imagine.\u2019\u201d<\/em><\/p>\n I don\u2019t believe in that expression.\u00a0 We teach our kids that they can imagine anything.\u00a0 Imagining isn\u2019t just for conjuring castles or superheroes.\u00a0 We can imagine suffering too.\u00a0 I think we do it all the time.\u00a0 But somehow, \u201cI can\u2019t imagine\u201d has become this thing people say when they hear about something hard and think, \u201cI don\u2019t know what to say.\u00a0 I don\u2019t want this person to think I\u2019m so arrogant as to say I can imagine what it\u2019s like to stand in her shoes.\u201d\u00a0 Although well-intentioned, I think \u201cI can\u2019t imagine\u201d only adds to the loneliness of something painful.\u00a0 In our unwillingness to risk imagining for fear of getting it wrong, that expression says, whoa, I can\u2019t go there with you, I can\u2019t even talk about it with you.<\/em><\/p>\n So I tell Jen, I will try my best to imagine.\u00a0 I want to understand this disease. I want to read as much as I can about it. I am grateful for the opportunity to read what other HIBM patients write or draw about their experiences.\u00a0 I want to listen to Jen tell me as much as she wants to share about what it is like to live and parent with this disease, what it is like for her body and her mind, what the small moments feel like each day, what she panics about in the middle of the night.\u00a0 I don\u2019t need to preface my understanding with a cap on its possibility \u2013 I don\u2019t need to tell her I can\u2019t imagine because I\u2019m able-bodied.\u00a0 Or I can\u2019t imagine for any other reason.\u00a0 Because I love her.\u00a0 So, yes, I\u00a0can\u00a0imagine how hard it is for Jen to struggle to pick up her baby or to walk up her two front steps.\u00a0 I\u00a0can\u00a0imagine how scary it is for her to slowly lose her mobility.<\/em><\/p>\n I wish we all spent more time imagining each other. Then maybe we would keep each other better company.\u00a0 Maybe we would help each other a little more and a little quicker and with a little less effort or awkwardness.\u00a0 Understanding takes effort and risk.\u00a0 Sometimes Jen and I talk about how people are afraid to ask her about her disability and disease, but unafraid to stare at her or look away.\u00a0 Of course, most of them are no doubt kind, caring people, who just worry, \u201cwhat if I don\u2019t say the right thing? What if I say something that makes it worse for her? What if by acknowledging her disability, I make her think about it?\u201d I don\u2019t worry about those questions.\u00a0 I know that everything I say to Jen comes from a place of openhearted, pure intention.\u00a0 I know that nothing I say has the power to make this disease any worse than it is.\u00a0 I know that if I ask her a question, she will answer it honestly.\u00a0 I know that if I say something that doesn\u2019t match what she\u2019s feeling, she will tell me and then I will take that learning into our next conversation.\u00a0 I also know that magic words don\u2019t exist, even though there are times I wish for them more than anything, because let me tell you, I would give them to Jen.<\/em><\/p>\n Jen knows that I follow her into her dark moments to keep her company, not to make them disappear.\u00a0 Same way she follows me into my dark moments, trying to imagine with me about my life, with no cap on her ability to understand me.\u201d<\/em><\/p>\n","protected":false},"excerpt":{"rendered":" I am going to post something a little different tonight. I have always said that one\u00a0reason\u00a0I\u00a0am\u00a0able to cope with HIBM in the way that I\u00a0do,\u00a0is\u00a0because I am lucky to be surrounded by such a strong support network- family and friends who are there for me in any way I need them to be.<\/p>\n","protected":false},"author":1,"featured_media":558,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[],"class_list":["post-26","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"aioseo_notices":[],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/05\/imagine2.jpg?fit=730%2C350&ssl=1","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/s5aYbC-imagine","jetpack_likes_enabled":true,"jetpack-related-posts":[{"id":11,"url":"https:\/\/livingwithhibm.com\/?p=11","url_meta":{"origin":26,"position":0},"title":"To my fellow HIBMers who know these feelings all too well…","author":"admin","date":"March 21, 2014","format":false,"excerpt":"That feeling you get when... ...you physically can't move out of the way (as in, just side step) when someone's trying to get by and he or she thinks you're just being rude. ...there's an earthquake and you realize you are completely helpless to escape in that moment (let alone\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/03\/wall.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/03\/wall.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/03\/wall.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/03\/wall.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":10,"url":"https:\/\/livingwithhibm.com\/?p=10","url_meta":{"origin":26,"position":1},"title":"An Open Letter to Equinox","author":"admin","date":"April 4, 2014","format":false,"excerpt":"Dear Equinox Westwood: I knew I was fooling myself when I first took a tour of your gym 1.5 years ago and thought that it would be a good idea for me to join- you know, given the 2 flights of stairs just to get to the front desk and\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/04\/more_steps.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/04\/more_steps.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/04\/more_steps.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/04\/more_steps.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":31,"url":"https:\/\/livingwithhibm.com\/?p=31","url_meta":{"origin":26,"position":2},"title":"When the disease is only half the battle.","author":"admin","date":"February 11, 2012","format":false,"excerpt":"This week was one of those weeks when I was made acutely aware of the fact that most people in the world-or at least, in my world in West Los Angeles- are not disabled. And as such, most people just don't get what it's like to not have their body\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/09\/parking.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/09\/parking.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/09\/parking.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/09\/parking.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":370,"url":"https:\/\/livingwithhibm.com\/?p=370","url_meta":{"origin":26,"position":3},"title":"The In-Between","author":"admin","date":"October 4, 2017","format":false,"excerpt":"Let everything happen to you Beauty and terror Just keep going No feeling is final \u2013Rainer Maria Rilke I've had some hard moments in these last few weeks.\u00a0I've had to navigate some unexpectedly tricky terrain on middle school tours while trying to keep up with the rest of the pack.\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/10\/stairs.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/10\/stairs.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/10\/stairs.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/10\/stairs.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":24,"url":"https:\/\/livingwithhibm.com\/?p=24","url_meta":{"origin":26,"position":4},"title":"Four blocks","author":"admin","date":"August 16, 2012","format":false,"excerpt":"Today was my son's first official full day of kindergarten. 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If you've had the experience of launching a child into the post-preschool world, then you are familiar with the anxiety of a parent who is hoping\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/08\/street.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/08\/street.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/08\/street.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/08\/street.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":691,"url":"https:\/\/livingwithhibm.com\/?p=691","url_meta":{"origin":26,"position":5},"title":"Desperation, Hope and a Plea","author":"admin","date":"October 9, 2018","format":false,"excerpt":"I\u2019m going to keep this post short and to the point because I need your attention now more than ever. 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