Putting Yourself out there in the MS Community/ An MS Halloween

I’ve got butterflies in my stomach, an elated nervousness wells in my chest. These are similar to the feelings I felt while growing up in the Mormon faith. Every month we had a Fast and Testimony meeting. Entering in the chapel of our church was serene, with piano music played upon entrance and friends greeting one another in low voices. On this particular Sunday members would forgo two meals that Sunday to get in the appropriate spirit for the meeting, following Jesus’s example of prayer and fasting. The amount that you saved by not eating those two meals was to be given to the church to be distributed to those for whom hunger may not be a choice, but a fact of life. So you thought of those less fortunate than you, feeling the aching stomach to experience what others do, not by choice, but because they do not have the same access to healthy nutrition.

The second part of Fast and Testimony Sunday, is being invited to share your testimony. This was out of invitation, if a member felt inspired to speak. There was a quickening feeling in my stomach, knots and butterflies as I would begin to compose my testimony in my head. I knew when I had something to share because the feelings would start before the thoughts even formed. Those Sunday’s were kind of agonizing, as the time for sharing testimonies lasted forty minutes and I sat with that nervous energy until I could stand it no longer. It forced me out of my seat and I walked to the front. I was about to share my core beliefs and my inner struggles with an audience of well wishers. I may be overcome by emotion, as I was after my grandfather died when I was fourteen. I might just break down and cry up there. It was okay though, they had a box of tissues on the podium because it was common for others to tear up as they shared. At the end of the meeting my fellow brothers and sisters of the congregation would come up to tell me how they enjoyed my testimony. Sometimes someone would look me fervently in the eye and say “thank you.” They would express that what I had said was exactly what they had been praying about and it gave them comfort. Overcoming my nervousness, had given them something they were lacking, and I had unknowingly had supplied balm for their wound. Testimonies grew out of sharing them with each other.

Well, brothers and sisters of the MS community, I have that same quickening and nervousness today as I write this. Some things you hold on to, through fear: what if it isn’t accepted, what if someone laughs at something that I feel in my core? The alternative is akin to the feeling I would have on those days when my spirit quickened and I did not share my testimony. The parable of the talents Jesus Christ gave, details that the talents we have been given need to be nurtured, and shared. If I let my talent lay dormant in the soil, and a connection that would have been made, never came to be. That sits harder, the feeling of a missed opportunity.

Why am I talking about my religious upbringing and talents, as related to my experience in the MS community? What am I so afraid of when I have already been putting myself out there in many forms, in many networks, since my relapse in October of 2018?

At an MRI last year, I took a balanced CBD/THC edible as usual to keep my legs from spasming while in the machine. I never want to be in there longer than I have to, so I do everything I can to make sure that I will remain as still as possible for the duration of the brain and cervical spine scans. Before I went into the MRI, an off the wall question popped into my head as I was going into the machine. It was kind of a joke, and I was finding it hilarious, but I was still lucid enough to realize the technician may not find it as hilarious as I did at the moment. So with an hour and nothing to do but listen to clanks, thunks, and burrr burr bzzzzzes I kept thinking about that funny, slightly macbre question I had wanted to ask. I started writing a story about it in my head. I kept the story there, and after the MRI I jotted down some notes. It stayed there, on the page, but it continued to grow in my mind.

The story is a little tense, some may find it scary, and I worry that some may even take offense. I’ve been scared to let it out. But I feel that quickening rising in my chest and building through my soul. It’s Halloween, and I need to put it out there. It’s time to release the story that I have kept so close to me, and only shared the basic idea with my closest friends and family. I haven’t read it to anyone. Yesterday, I mentioned this in the MS Healthline‘s app Live Chat with Kathy Regan Young. She regularly hosts Vent Events, where you are invited to get whatever is bugging you off your chest. It’s an invitation to unburden yourself and share. I had so much weighing on me, and wrote it all down. One was about my hesitation and fear over sharing this story I created. A friend replied, “What do you have to loose?”

There is nothing to loose by sharing the feelings that are important to you. I encourage you all to add your voice to the growing movement through the MS Community and the medical community as we come closer together in collaboration. It is really a beautiful and amazing time, and I am so grateful I get to add my perspective and experiences. I also thrive on hearing the experiences of others throughout the community and see the changes that are taking place in treatments before our eyes.

So, I want to put my voice out there and share the scary story with you all. When I was diagnosed with MS at 20, and it kinda put a damper on my ability to participate and have fun at Halloween parties. I had a couple of good times, but as my symptoms became more frightening, I shied away from public events with lots of people.

One Halloween when I was twenty six, I was beginning to have fewer of the scary seizure-like- spasms I used to have. However, I didn’t have a lot of friends in Salt Lake City, and I was a little scared and wary of driving in a city. My eyes would shake whenever I felt overwhelmed, and I feared the unpredictability of driving. I dressed up but had no party to go to in a city and culture that loves to celebrate Halloween. A couple of years later I got married, I had kids, and it has been quite a long time since I’ve been to an adult Halloween party.

I would like to host a virtual party for us on Halloween. Maybe there are those who feel the same way as I do, that MS got in the way of partying on Halloween. Maybe you dressed up for a party, but by the time you were ready you were too exhausted to go. Good news! This party will be virtual with MS friends, and if you’re tired, you can just say I’m tired. We will thank you for coming, and you can log off; or, if you prefer you can stay logged in and lay down. We won’t judge, cause we’ve been there!

I would like to share my scary story with you at this party (it would take about 20 minutes to read), and if you have a scary story you would like to share too, email it to me at msguidedbits@gmail.com.

Do you have a preference on a virtual platform? I’m still trying to figure out which platform to use and suggestions are welcome. Please comment below if you have any suggestions.

Have any suggestions on a signature cocktail for the evening? Any recipes for treats to share? Comment below or send me your recipes and I’ll post them to the blog to share with everyone who is interested in participating!

Costumes are welcome, but optional.

I put this off as long as I could. It’s now or never. I’m so very nervous, but at least this is the first step. Sigh.

If you want to hear my story and have some fun on Halloween let me know. Details on time, and the platform will be forthcoming. I’m considering starting the party at 10 pm EST/ 7 PM PST.

Thank you for reading, and may God be with you till we meet again.

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