{"id":366,"date":"2017-09-06T08:13:37","date_gmt":"2017-09-06T15:13:37","guid":{"rendered":"http:\/\/livingwithhibm.com\/?p=366"},"modified":"2017-11-18T15:06:34","modified_gmt":"2017-11-18T23:06:34","slug":"my-podcast-interview-for-last-cut-conversations-with-samantha-paige","status":"publish","type":"post","link":"https:\/\/livingwithhibm.com\/?p=366","title":{"rendered":"My Podcast interview for &#8220;Last Cut Conversations&#8221; with Samantha Paige"},"content":{"rendered":"<p>Two weeks ago I attended the Neuromuscular Disease Foundation&#8217;s 4th annual patient symposium. Though I thought I&#8217;d be ready to blog about it by now, it turns out my mind is still busy unpacking all of my thoughts and feelings around it. There was the collective grieving of the failed clinical trial, the experience of meeting patients I had only ever corresponded with on Facebook, the painful realization that I am by far no longer the least progressed patient in the room and finally, the sobering news that the most promising treatment-gene therapy-will require a staggering 3.5 million dollars in funding.<\/p>\n<p><!--more--><\/p>\n<p>In the meantime, I want to invite you to listen to an interview I recently did with Samantha Paige for her podcast, &#8220;Last Cut Conversations.&#8221; Last Cut is a multi-media documentary project that Samantha is working on about &#8220;those big life decisions (last cuts) made to bring us closer to living a life that feels like our own.&#8221; You may have seen Sam proudly and boldly baring her mastectomy scars in Equinox&#8217;s &#8220;Commit to Something&#8221; ad campaign or more recently, featured in Allure magazine&#8217;s video series, \u00a0&#8220;Dispelling Beauty Myths.&#8221;\u00a0Sam has made it her mission to live life with honesty and authenticity and she is inspiring others to do the same.<\/p>\n<p>I was honored to spend time with Samantha and her incredibly talented collaborator, photographer Lisa Field.\u00a0 I talked about what it&#8217;s like to live with a debilitating disease, what I believe is crucial to emotional survival (love), how I think we can do better in our conversations around disability and loss, and what true freedom looks and feels like for me. I also touched upon the cultural stigma of disease in my Persian community and offered some suggestions on how to truly show up for someone who is suffering. Oh, and I also somehow managed to share the fact that people called me &#8220;Slash&#8221; from Guns and Roses in 8th grade because of my big hair. (Photo provided upon request.)<\/p>\n<p>Just when I thought I couldn&#8217;t feel any more vulnerable, I learned that speaking spontaneously into a live microphone about deeply personal experiences feels a whole lot more exposed than sitting in the comfort of my own home, editing carefully chosen typed words in a blog post.\u00a0 But particularly since we are living in such difficult times in which we all need more kindness and humanity, I feel it is important to put my voice out there, even when it\u2019s a bit uncomfortable.\u00a0 Thank you for listening.<\/p>\n<p><a href=\"http:\/\/lastcutproject.com\/podcast\/2017\/9\/4\/jennifer-yashari\" data-saferedirecturl=\"https:\/\/www.google.com\/url?hl=en&amp;q=http:\/\/lastcutproject.com\/podcast\/2017\/9\/4\/jennifer-yashari&amp;source=gmail&amp;ust=1506352604965000&amp;usg=AFQjCNGOqhGf7MsJWdd3sGjdJgDe8rmfXw\">http:\/\/lastcutproject.com\/podcast\/2017\/9\/4\/jennifer-yashar<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Two weeks ago I attended the Neuromuscular Disease Foundation&#8217;s 4th annual patient symposium. Though I thought I&#8217;d be ready to blog about it by now, it turns out my mind is still busy unpacking all of my thoughts and feelings around it. There was the collective grieving of the failed clinical trial, the experience of<\/p>\n<div><a class=\"btn-filled btn\" href=\"https:\/\/livingwithhibm.com\/?p=366\" title=\"My Podcast interview for &#8220;Last Cut Conversations&#8221; with Samantha Paige\">Read More<\/a><\/div>\n","protected":false},"author":1,"featured_media":424,"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-366","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\/2017\/09\/lastcut.jpg?fit=730%2C350&ssl=1","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5aYbC-5U","jetpack_likes_enabled":true,"jetpack-related-posts":[{"id":379,"url":"https:\/\/livingwithhibm.com\/?p=379","url_meta":{"origin":366,"position":0},"title":"My voice in the Jewish Journal","author":"admin","date":"October 12, 2017","format":false,"excerpt":"I have always drawn a clear line between my personal life and my professional life. I pride myself on being a \u201cboundaried\u201d therapist. I don\u2019t typically disclose details of my personal life (e.g. whether or not I have kids) and I don\u2019t insert my feelings or opinions into the room.\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\/jewishj2.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\/jewishj2.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/10\/jewishj2.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/10\/jewishj2.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":15,"url":"https:\/\/livingwithhibm.com\/?p=15","url_meta":{"origin":366,"position":1},"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":98,"url":"https:\/\/livingwithhibm.com\/?p=98","url_meta":{"origin":366,"position":2},"title":"Reflections from an airport. (Be forewarned, there are a lot of them)","author":"admin","date":"October 13, 2014","format":false,"excerpt":"Sometimes I like to wait until I've more fully processed my thoughts and feelings about something before writing a blog post. And other times, I blog about something to more fully understand how I feel and where I stand on something. This is one of those times. Yesterday I spent\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\/10\/clouds.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/10\/clouds.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/10\/clouds.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/10\/clouds.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":228,"url":"https:\/\/livingwithhibm.com\/?p=228","url_meta":{"origin":366,"position":3},"title":"Thank you","author":"admin","date":"November 27, 2015","format":false,"excerpt":"I was going to post yesterday, but I chickened out. I was going post about how, for someone who feels in touch with gratitude on a regular basis, \u00a0it was disappointing to not feel\u00a0it to the degree I normally do on Thanksgiving. \u00a0Thanksgiving is like my gratitude Superbowl.\u00a0It's when we\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2015\/11\/thanks.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2015\/11\/thanks.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2015\/11\/thanks.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2015\/11\/thanks.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":18,"url":"https:\/\/livingwithhibm.com\/?p=18","url_meta":{"origin":366,"position":4},"title":"Last night&#8217;s fundraiser&#8230;","author":"admin","date":"June 7, 2013","format":false,"excerpt":"\u00a0 Last night I spoke to about 200 people at a Hadassah fundraising event. All of the money was going directly to fund HIBM research in Israel. \u00a0 Any time I am asked to speak about my experiences living with this disease, I have an immediate mixed reaction. On the\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\/mic2.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\/mic2.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/06\/mic2.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/06\/mic2.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":795,"url":"https:\/\/livingwithhibm.com\/?p=795","url_meta":{"origin":366,"position":5},"title":"Dark Corners","author":"admin","date":"April 25, 2020","format":false,"excerpt":"In moments when I am so overwhelmed by the reality of my disease, I go into extreme coping mode. This involves me zooming out as far as possible- far enough to try to intellectually conceptualize this life as simply another phase of my existence. Just a blip.\u00a0 It\u2019s a clear\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2020\/04\/img_0375-1.jpg?fit=1200%2C1067&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2020\/04\/img_0375-1.jpg?fit=1200%2C1067&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2020\/04\/img_0375-1.jpg?fit=1200%2C1067&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2020\/04\/img_0375-1.jpg?fit=1200%2C1067&ssl=1&resize=700%2C400 2x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2020\/04\/img_0375-1.jpg?fit=1200%2C1067&ssl=1&resize=1050%2C600 3x"},"classes":[]}],"_links":{"self":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/366","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=366"}],"version-history":[{"count":3,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/366\/revisions"}],"predecessor-version":[{"id":430,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/366\/revisions\/430"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/media\/424"}],"wp:attachment":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=366"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=366"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=366"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}