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Erase MS

News from January 2018

Vulnerability: The undisclosed side effect of Multiple Sclerosis

January 5, 2018

When reflecting on this last year, and what triumphs, growth and failures I had experienced, I came to discover a new truth of mine: Nothing scares me more than vulnerability. Not only when it comes to love, but in every aspect of my life. Having M.S. requires that we have vulnerable moments (whether we agree to them or not) because there is so much that goes on with this illness that is out of our control. We often find ourselves laying in muted colored, half-open hospital gowns, or unable to walk, see, or do many other unforeseen life activities that requires we accept help. We are forced to have open, honest conversations that can often times be not only fragile, but embarrassing as well. Hopefully we can learn to not only accept the vulnerability aspect, but eventually embrace it, and use it to help us grow individually, in our relationships with others, and help us manage symptoms more effectively.

I’ll never forget the first time I felt safe being vulnerable while in the hospital. I had a friend come visit me, and as I laid there looking like the walking dead (at least once you’re a zombie you’re no longer expected to wash your hair or apply lipstick) he placed the palm of his hand tenderly upon my cheek and said, “I wish you’d let me know how you really feel, and understand that you are beautiful and strong, even in the moments you feel weak.” Needless to say, besides being taken back by his comment I felt comfortable to let my guard down and be real about how I was actually feeling. I can imagine hearing “I’m fine” repeatedly would be frustrating for those that love, and want to help us. I understand it’s going to take time to be vulnerable with others, in regards to the ins-and-outs of our disease and symptoms, but can I encourage you to give it a try, if you haven’t already. Once we feel safe to divulge our struggles and fears we can apply methods to help us with those fears. Not to mention, once others are on board with our true trials and thoughts, communicating on a whim if something goes awry is much simpler because they are already in tune with your daily life challenges. I remember (before “retiring” onto disability) a co-worker of mine called me a liar when I told her I could not see our Accounts Payable reports. She had never heard me complain about vision loss in the past, and of course I never mentioned to her my frolicking symptoms, so she was in disbelief. While it was insanely rude of her to make that comment, I can understand how making that leap was tough for her. I showed up to work in my suit and heels (despite the pain and spasms in my feet and legs) and suffered through countless workdays until my truth decided to show up and hold my vision hostage for several months. I truly believe that if I had allowed myself to have an open, honest conversation with her things would have ended differently with us. Unfortunately, my pride won the debate of whether or not to be open with her, and therefor has now been put in check.

I have grown to understand that only through being vulnerable, broken-open, and at times brutally honest, can we expect to have successful relationships with our loved ones, and ourselves. I had someone tell me the other day after I cancelled with them out of fatigue that I “had time for everything else” and I immediately got furious. This person doesn’t know I spend 70% of my life on the couch as living proof of real-life couch potatoes. However, if I had been better at communicating (and they had a bit more respect and understanding) this confrontation could have been avoided. Not to mention, once others are up to speed on our symptoms and challenges, we no longer have to bring them up, and can enjoy visits with a mutual understanding of what is needed for our health and well-being.

I’m going to make an effort to be intentionally open with those closest to me about what I am facing, as well as what I might need. While vulnerability can appear intimidating, and even scary, I must admit that I have found it helped me flex my ‘courageous’ muscle and that has increased my inner-strength. As I count my blessing from 2017, and the blissful holiday season that just passed, I look into 2018 and see a year full of grace and promise waiting to unravel for us all. Even though there will be struggles, may we find beauty and bravery amidst the ache.

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