{"id":11,"date":"2014-03-21T02:32:00","date_gmt":"2014-03-21T02:32:00","guid":{"rendered":"http:\/\/gator3119.hostgator.com\/~holdenjl\/?p=11"},"modified":"2017-11-19T12:01:53","modified_gmt":"2017-11-19T20:01:53","slug":"to-my-fellow-hibmers-who-know-these-feelings-all-too-well","status":"publish","type":"post","link":"https:\/\/livingwithhibm.com\/?p=11","title":{"rendered":"To my fellow HIBMers who know these feelings all too well&#8230;"},"content":{"rendered":"<p>That feeling you get when&#8230;<\/p>\n<p>&#8230;you physically can&#8217;t move out of the way (as in, just side step) when someone&#8217;s trying to get by and he or she thinks you&#8217;re just being rude.<br \/>\n&#8230;there&#8217;s an earthquake and you realize you are completely helpless to escape in that moment (let alone to be able to run to your kids when they may need you most).<br \/>\n&#8230;someone who&#8217;s ahead of you (and maybe in a rush) is being kind by holding the door open for you and you feel terrible because they don&#8217;t realize how long they will have to wait until you hobble your way over to them.<\/p>\n<p><!--more--><br \/>\n&#8230;you meet someone for the first time, e.g. in your new book club and you don&#8217;t know how, when or even if you should or need to reveal this &#8220;secret&#8221; or plain simple fact about yourself and your disability.<br \/>\n&#8230;you meet someone new, whether it&#8217;s sitting in a parents&#8217; meeting at school or swimming in the pool at the gym and eventually you know you&#8217;ll have to get up and out and display your disabled body and awkward gait for everyone to see and you are once again reminded that you will never have the luxury of just being you rather than you with the disability.<br \/>\n&#8230; you&#8217;re at the supermarket check-out \u00a0and you realize you forgot to get something, but the line behind you is so long that you just accept defeat and plan to get it the next time.<\/p>\n<p>Then there&#8217;s the feeling you get when&#8230;<\/p>\n<p>&#8230;you hire a ski instructor (who&#8217;s not part of the adaptive ski program because they happen to be shut down for the few days that you&#8217;re there) and you tell him you feel bad that he has to constantly take his skis and gloves on and off and then bend down to attach and detach the special hardware on your skis every time you get on and off the lift and his response is, &#8220;Are you kidding me? This is nothing compared to what you have to deal with on a daily basis.&#8221;<br \/>\n&#8230;you&#8217;ve spent the last 7 years dreading the day when one of your sons would eventually have to help you physically in some way and it turns out it&#8217;s actually not a burden for him but rather something he does naturally and with such pride.<br \/>\n&#8230;your receive weekly deliveries of fresh pomegranates seeds from your father and step-mother which they&#8217;ve spent hours processing for you because they want to ensure you&#8217;re eating enough antioxidants.<br \/>\n&#8230;your mother and mother-in-law drop everything when you say your husband&#8217;s on an urgent care shift and you need help with the kids.<br \/>\n&#8230;your husband surprises you and takes it upon himself to have railings installed on the sides of the two steps in front of your house that have been giving you trouble for a while, because you couldn&#8217;t bring yourself to deal with it in any productive way.<br \/>\n&#8230;you discover a cute new pair of retro sneakers to add to your collection of lace-up shoes only and you get a boost.<br \/>\n&#8230;your preschool mom friends regularly check in with you at an indoor gym birthday party to see if they can help you out in any way.<br \/>\n&#8230;you travel through your life and realize that your highs are incredibly, unimaginably high and the lows are tragically, painfully low, and you conclude that you&#8217;d rather struggle to hold onto and \u00a0experience \u00a0all of it than settle for the alternative.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>That feeling you get when&#8230; &#8230;you physically can&#8217;t move out of the way (as in, just side step) when someone&#8217;s trying to get by and he or she thinks you&#8217;re just being rude. &#8230;there&#8217;s an earthquake and you realize you are completely helpless to escape in that moment (let alone to be able to run<\/p>\n<div><a class=\"btn-filled btn\" href=\"https:\/\/livingwithhibm.com\/?p=11\" title=\"To my fellow HIBMers who know these feelings all too well&#8230;\">Read More<\/a><\/div>\n","protected":false},"author":1,"featured_media":543,"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-11","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\/2014\/03\/wall.jpg?fit=730%2C350&ssl=1","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5aYbC-b","jetpack_likes_enabled":true,"jetpack-related-posts":[{"id":15,"url":"https:\/\/livingwithhibm.com\/?p=15","url_meta":{"origin":11,"position":0},"title":"The Jennifer Room","author":"admin","date":"September 29, 2013","format":false,"excerpt":"About a month ago, I received an invitation to attend a \"Patient Day\" reception hosted by Dr. Emil Kakkis, CEO of Ultragenyx. Ultragenyx is the biotech company that is currently in phase II of a clinical trial for a potential treatment to slow the progression of HIBM. \u00a0Dr. Kakkis was\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/09\/IMG_0450.jpg?fit=1024%2C768&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/09\/IMG_0450.jpg?fit=1024%2C768&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/09\/IMG_0450.jpg?fit=1024%2C768&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/09\/IMG_0450.jpg?fit=1024%2C768&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":16,"url":"https:\/\/livingwithhibm.com\/?p=16","url_meta":{"origin":11,"position":1},"title":"Tired","author":"admin","date":"August 27, 2013","format":false,"excerpt":"I'm tired. I'm over it. I feel like it's enough already. I've risen to the challenge, I've tapped into my inner emotional resilience, I've gained invaluable coping tools and I've been given the gift of learning to truly appreciate what I have. But now I'm \u00a0ready to be done. Ready\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/08\/rain2.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/08\/rain2.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/08\/rain2.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/08\/rain2.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":879,"url":"https:\/\/livingwithhibm.com\/?p=879","url_meta":{"origin":11,"position":2},"title":"As we slowly exit the pandemic&#8230;","author":"admin","date":"May 26, 2021","format":false,"excerpt":"A couple of months into the pandemic in May 2020, I was invited to participate in a one on one backyard chat hosted by Cantor Tiffani Coyot of Temple Isaiah. In addition to being a cantor with a stunningly gorgeous voice, Tifani is also a self described \u201cwellness enthusiast.\u201c Tifani\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2021\/05\/08C627D4-4B15-4A1F-ADF9-0F457AAEDC37_1_201_a.jpeg?fit=750%2C208&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2021\/05\/08C627D4-4B15-4A1F-ADF9-0F457AAEDC37_1_201_a.jpeg?fit=750%2C208&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2021\/05\/08C627D4-4B15-4A1F-ADF9-0F457AAEDC37_1_201_a.jpeg?fit=750%2C208&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2021\/05\/08C627D4-4B15-4A1F-ADF9-0F457AAEDC37_1_201_a.jpeg?fit=750%2C208&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":31,"url":"https:\/\/livingwithhibm.com\/?p=31","url_meta":{"origin":11,"position":3},"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":80,"url":"https:\/\/livingwithhibm.com\/?p=80","url_meta":{"origin":11,"position":4},"title":"Hank and Me","author":"admin","date":"October 8, 2014","format":false,"excerpt":"Never in my life did I think I'd find myself hanging out with Hank. He was simply not my type. I saw no reason to ever have to get close to someone like him. We just didn't have a connection. A couple of years ago, it seemed that everywhere I\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":17,"url":"https:\/\/livingwithhibm.com\/?p=17","url_meta":{"origin":11,"position":5},"title":"Dedicated to the one I love&#8230;","author":"admin","date":"June 16, 2013","format":false,"excerpt":"Recently my sister told me that someone who saw me speak at the last fundraiser thought I was \"amazing.\" She then told me that this person said my husband was even more amazing. I wondered how he knew that without even knowing or talking to my husband, because of course,\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/06\/flowers.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/06\/flowers.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/06\/flowers.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/06\/flowers.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]}],"_links":{"self":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/11","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=11"}],"version-history":[{"count":3,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/11\/revisions"}],"predecessor-version":[{"id":545,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/11\/revisions\/545"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/media\/543"}],"wp:attachment":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=11"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=11"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=11"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}