{"id":842,"date":"2021-01-02T13:58:51","date_gmt":"2021-01-02T21:58:51","guid":{"rendered":"http:\/\/livingwithhibm.com\/?p=842"},"modified":"2021-01-02T16:53:38","modified_gmt":"2021-01-03T00:53:38","slug":"tunnels","status":"publish","type":"post","link":"https:\/\/livingwithhibm.com\/?p=842","title":{"rendered":"Tunnels"},"content":{"rendered":"\n

We made it to 2021.<\/p>\n\n\n\n

No matter who you are or how you move through life, these are trying times. Even if denial is your go-to coping strategy, it\u2019s become increasingly difficult to avoid the discomfort. Loss is everywhere.  When we hear that someone we know who has it or was hospitalized or has died from COVID-19, we are reminded. When we notice we have a dry cough, feel nauseated or feverish. We feel it.  That pang of panic. The one that immediately transmits from the gut to the brain the dreaded, acutely unanswerable question: Oh no. Is it happening? Do I have it? <\/em><\/p>\n\n\n\n

For most people, this is a new, very Covid-specific phenomenon.  But it\u2019s the emotional landscape I\u2019ve been navigating ever since my HIBM\/ GNE myopathy diagnosis. Fear and helplessness. Overwhelming mental fatigue. Ongoing attempts at reassuring myself it\u2019s going to be okay, despite the consistent threat and actuality of living in a body whose muscles are increasingly less okay; never knowing when, how quickly or how severe the damage will be or worse, the toll it will take on my psyche. Never being able to feel truly and wholly carefree.<\/p>\n\n\n\n

This pandemic is currently in a brutally dark phase. We don\u2019t know the extent of the devastation ahead nor when it will come to an end. But as the vaccine rolls out, the light is ever so slowly becoming brighter. Glimpses of what life might look like when it\u2019s all over are slowly coming into view.<\/p>\n\n\n\n

For those of us living with chronic, progressively debilitating diseases with no treatments or cures, our tunnels remain long and dark. The losses will continue as they always have. The same anticipatory anxiety and feelings of vulnerability will linger long after this pandemic is over. Possibly for the rest of our lives.<\/p>\n\n\n\n

When I was first diagnosed, I was told the end was in sight. That was 15 years ago.<\/p>\n\n\n\n

Luckily, I don\u2019t live in anguish all the time.  I\u2019ve worked hard to learn how to create my own light.  But the first few months of quarantine really tested my resilience. I learned the excruciating way that abruptly discontinuing physical therapy, massage and exercise was not an option for my body, pandemic or not. I couldn\u2019t move without pain, I couldn\u2019t stand up straight and I relied on a wheeled office chair and a walker to get around. <\/p>\n\n\n\n

Then, a couple months later, I emerged pain-free and into one of the most magical nights of my life, celebrating my son\u2019s \u201ccar mitzvah.\u201d (see post here<\/a>). The residual feelings of pure joy and gratitude from that experience sustained me for a long while. After that, between remote school starting, work being busy and consuming the news non-stop in my down time, my mind was sufficiently distracted. I rarely had time alone. And without realizing it, because I wasn\u2019t heading into the (often inaccessible) world on a daily basis, I wasn\u2019t experiencing the usual angst and frustration that accompanies such simple acts as stepping up onto a curb, pulling my car door closed or walking my kid across a soccer field. I was doing well.<\/p>\n\n\n\n

That changed over Thanksgiving. After taking all the possible precautions, my boys went to spend some time at their grandparents\u2019. More than ever, I was looking forward to the down time with my husband and the freedom and relaxation of being temporarily kid-free. Instead, within hours of being home alone, I was greeted by an unexpected and unwelcome quiet in my mind. I felt unsettled. Slowly, I started to hear the noise that had been drowned out for so long by the more immediate stressors of living, working and raising kids during a global pandemic.<\/p>\n\n\n\n

All of the intimate, quiet losses I\u2019d suffered during the last 6 months of the pandemic started yelling at me, demanding to be felt and grieved. Like the time I was pouring a large bottle of cold brew coffee into my cup and it spilled everywhere because my wrist gave out. Or when I went to grasp onto and drink from my full 1 L Nalgene bottle and I didn\u2019t have the strength to lift it all the way to my mouth without assistance from my other hand. Or when the TV remote dropped on the floor while I was lying on the couch and after leaning down to pick it up, I could barely lift my head back up onto the cushion. Or when I went to put on a button down shirt for the first time in 9 months and I literally could not button it. Not a single button. No matter how I contorted my weakened fingers. No matter how many minutes I spent trying.<\/p>\n\n\n\n

Foolishly, I thought I had deftly filed those losses away as they occurred. But I know better. Those moments are so terrifying that even when I try to slip right past them and keep them to myself, they leave a mark on my amygdala. <\/p>\n\n\n\n

So I sat in my quiet house and I felt angry and sad. All I could do was cry. <\/p>\n\n\n\n

I cried a lot that week.The timing was suboptimal, but this disease doesn\u2019t let up. I can\u2019t afford to be irresponsible when it comes to my mental health. I would be such a sad person if I didn\u2019t cry. Staying in denial for too long would only increase my risk for injury and potentially more disability. I must be alert when loss comes. I must stop, stare at it, hold it, grieve it and ultimately find the strength to let it go. I must be mentally prepared for the reality that I may be saying good-bye forever. In these moments, I must not try to talk myself out of the fact that what is happening is real. I can only talk myself into<\/em> accepting what is true, if I am to continue to emotionally survive life with this disease.<\/p>\n\n\n\n

A few weeks ago I had two medical appointments I had to cancel because of the surge. One was to finally start dealing with the worsening arthritic- like pain and swelling in the joints of my much weaker left hand. The other was to get fitted for a walker. Not because I need a walker full-time just yet, but because this is my process. If I get it before I need it, I can ease in, reminding myself it\u2019s still a choice, not a need. Then, once I inevitably must rely on it, I will hopefully have become somewhat desensitized to the emotional discomfort it brings. Not the discomfort of the walker itself as much as its unwelcome reminder that no matter how much I exercise, how healthy I eat, how hard I work to find joy, I remain at the mercy of this disease. <\/p>\n\n\n\n

It didn\u2019t feel good to make those appointments. Doing the hard work of showing up and confronting uncomfortable truths in real time rarely does. But avoiding the discomfort inevitably feels even worse and almost always comes at a higher price. <\/p>\n\n\n\n

This pandemic is uncomfortable in every and all ways. You can choose to try to bypass, distract from and hold off on feeling all the feelings from now until it\u2019s over. But I don\u2019t have that luxury living with this disease. I can\u2019t just choose to temporarily emotionally survive until it\u2019s over. I must continue to find ways to live in it, fully and wholeheartedly. I must continue to trust that growth will follow discomfort and that adaptation will follow loss. For me, it\u2019s the only way through. \ufeff<\/p>\n","protected":false},"excerpt":{"rendered":"

We made it to 2021. No matter who you are or how you move through life, these are trying times. Even if denial is your go-to coping strategy, it\u2019s become increasingly difficult to avoid the discomfort. Loss is everywhere.  When we hear that someone we know who has it or was hospitalized or has died<\/p>\n

Read More<\/a><\/div>\n","protected":false},"author":1,"featured_media":844,"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":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[],"class_list":["post-842","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\/2021\/01\/pexels-photo-3043424.jpeg?fit=1880%2C1254&ssl=1","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/s5aYbC-tunnels","jetpack_likes_enabled":true,"jetpack-related-posts":[{"id":348,"url":"https:\/\/livingwithhibm.com\/?p=348","url_meta":{"origin":842,"position":0},"title":"I feel","author":"admin","date":"August 22, 2017","format":false,"excerpt":"I feel sad. I feel deflated. I feel disheartened. I feel angry. I feel betrayed. I feel frustrated. I feel helpless. I feel overwhelmed. I feel rage. I feel tired. I feel drained. I feel exhausted. I feel scared. I feel terrified. I feel desperate. While innocently scrolling through Facebook\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\/08\/chroma.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/08\/chroma.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/08\/chroma.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/08\/chroma.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":35,"url":"https:\/\/livingwithhibm.com\/?p=35","url_meta":{"origin":842,"position":1},"title":"Just ask me.","author":"admin","date":"July 6, 2011","format":false,"excerpt":"A couple of days ago, I asked my four year old son if he wanted to come change his baby brother's diaper with me. As I slowly made my way over to the changing table, he ran (as he often does, because everything seems to be a competition these days)\u2026","rel":"","context":"With 2 comments","block_context":{"text":"With 2 comments","link":"https:\/\/livingwithhibm.com\/?p=35#comments"},"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":236,"url":"https:\/\/livingwithhibm.com\/?p=236","url_meta":{"origin":842,"position":2},"title":"Pain is inevitable. Suffering is a choice.","author":"admin","date":"February 15, 2016","format":false,"excerpt":"I'm coming up on 10 years of knowingly living with this disease. An entire decade. One fourth of my life. Throughout these past 10 years, I have mourned losses, adjusted to new baselines, adapted new ways of coping, advocated on behalf of patients and invested a tremendous amount of emotional\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/02\/sail.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/02\/sail.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/02\/sail.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/02\/sail.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":17,"url":"https:\/\/livingwithhibm.com\/?p=17","url_meta":{"origin":842,"position":3},"title":"Dedicated to the one I love…","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":[]},{"id":169,"url":"https:\/\/livingwithhibm.com\/?p=169","url_meta":{"origin":842,"position":4},"title":"What goes up must come down","author":"admin","date":"June 5, 2015","format":false,"excerpt":"I've had a good few months. Like, really good. If you've hung out with me lately, you've probably had the fleeting thought of, \"Um, is Jen on stimulants?\" As in, I've been talking fast and thinking fast- what I jokingly refer to as feeling \"high on life.\" And though 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\/2015\/06\/balls.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2015\/06\/balls.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2015\/06\/balls.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2015\/06\/balls.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":186,"url":"https:\/\/livingwithhibm.com\/?p=186","url_meta":{"origin":842,"position":5},"title":"Chapter 14: The 9.5 Year Phase","author":"admin","date":"July 31, 2015","format":false,"excerpt":"Wouldn't that be so nice? If there were actually an entire textbook dedicated to HIBM? One with an index where I could look up what to expect a year, two years or 10 years from disease onset? With chapters like, \"How Much Exercise is Okay?\" Or, \"What is the Role\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\/08\/chroma.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/08\/chroma.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/08\/chroma.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/08\/chroma.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]}],"_links":{"self":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/842","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=842"}],"version-history":[{"count":5,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/842\/revisions"}],"predecessor-version":[{"id":849,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/842\/revisions\/849"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/media\/844"}],"wp:attachment":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=842"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=842"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=842"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}