LIVING WITH HIBM

What it's like to live with a progressive neuromuscular disease

Wednesday, September 17, 2014

Quick follow-up/Love is Everything

I’m not usually one to blog two days in a row, so I will try keep this short and to the point…

The profoundly therapeutic effect of the kind of love and compassion that comes pouring in after a blog post is one that never ceases to amaze me. My reality from last night to today hasn’t changed, yet my emotional state feels so much more calm, regulated and at peace. Less fearful. More hopeful. Less alone.

I have spent a lot of time thinking about this phenomenon. How it happens. What factors contribute to the shift in mood.  Wondering how I can feel so good when a part of my life is so bad. And it always comes back to the same few things: authenticity, honesty, vulnerability and a willingness to love and be loved.

You may be thinking to yourself, “There she goes again with the vulnerability piece.” But I can’t help myself. And I should warn you, I am probably going to be talking about it until the end of my time here, because I truly believe it is the key to a meaningful and successful life. And if I sound preachy, I apologize. But I like to think I have some street cred when it comes to this, which is why I hope you’ll trust me and just sit with it for a moment.

It feels so scary,  to expose yourself.  There are so many unknowns. And there are no take backs once you let people in. But if you choose to surround yourself with people who can hear it and hold it, if you invest in friendships by truly letting another person in on where you’re at and if you allow  them to feel safe enough to do the same, well, then the internal emotional quality of your life no longer becomes dependent on your physical state or your income or  your status or any other aspect of your external reality. Instead, true happiness (at least in my humble opinion) comes from true love. Romantic love, friendship love, family love, community love and of course, the love of oneself.

And speaking of compassion for oneself, for those who wished me luck today, who thought of  me and  rooted for me in anticipation my appointment, I should share that in the end, I did not/ chose not to go. Of course, my first thoughts or rather,  judgements of myself were that I was chickening out, that “I guess I wasn’t as brave as I thought I was.” (Unfortunately, that voice is often the loudest at first.) But then I gently reminded myself that there are no rules or “shoulds” in the game of coping. We all have to go at our own pace. We have to truly understand ourselves and honor where we’re at. Everyone’s process is different. If you force it before you’re ready for it, it almost always backfires. I have learned that lesson enough times to respect the process.

I didn’t reschedule my appointment yet. But I know I will. I know I will get there. For the time being, I am just going to keep staring at the driveway through the window of my living room…

Please visit the NDF website for more information about HIBM and how you can help fund a cure

Neuromuscular Disease Foundation

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