I don’t like being vulnerable. Who does. But vulnerability counts. In many ways. Across many avenues of life.
Take blogging. It’s about giving yourself to others. An act of generosity as Jean-Luc Boissonneault writes. Because trust happens “when you’re generous.” (Nicely said, Jean-Luc.)
Well, that kind of generosity can be hard. Giving myself to others (in that way) is not something I’ve been willing to do. For many reasons.
Here’s one: it means people see me. They may be sympathetic. Judging. Disinterested. I don’t know. They may even commiserate or empathize.
It’s a risk though.
Letting people see me, letting others in, is hard. I don’t like it.
I haven’t confessed much here
I named this blog Confessions of a social media junkie and yet, when I look back on what I’ve written…I haven’t confessed much. Not truly. (Except for this one time…)
The reason I haven’t truly shared here is because I’m a big chicken.
I don’t want you to see that I don’t have it together all the time. I struggle. With parenthood, couple-hood, adulthood. All the ‘hoods, really.
My life is good and blessed in so many ways. And these burdens, their weight is no heavier than yours. They’re merely different.
I have so much to be grateful for. So much so, that sharing what isn’t working and what is a struggle feels like an ungrateful act.
I also haven’t confessed much here because my life story is intertwined with the lives of others – and their stories are not mine to share.
So do I tell the half story? The split truths that aren’t lies but are more like stories with missing chapters?
I’ve come to realize the answer is yes. Because I need to. My brain is so full of words and thoughts I
want need to dump them out even if they don’t make sense to anyone else but me.
So here’s a confession
My husband has multiple sclerosis (MS). It sucks.
That’s not the confession part though.
What is difficult to admit is how hard it is to watch my husband battle this disease. How exhausted he is from the simplest of tasks. Walking a few short steps is like running a marathon.
You might think I’m exaggerating. But I’m not.
That fatigue is the hardest for people to understand. Me included.
My husband is a guy who had natural athletic ability. He basically took to any sport he played.
I’ve always found it equally impressive as it was annoying because I’m uncoordinated and have to work hard at developing athletic skill at the most basic of levels.
It is incredibly difficult to watch my husband lose not just his ability to play any sport he wants, but to lose the ability to stand more than five minutes. To have difficulty writing a sentence. To no longer physically participate in the maintenance of our home.
While many people know MS exists, they don’t know a lot about it.
How this disease attacks each person differently. How the pace of that attack can come in spits and spurts or in a slow, steady creep of decline.
My husband is on that slow, steady creep of decline.
Kind, well-intentioned people in our lives will ask – well, what if he just exercised more? Ate the right kinds of foods? Tried that vitamin or this medication?
It is an unfortunate truth that he is doing all that he can and this disease is still coming out on top.
And so we adjust. We modify our lives and our schedules to accommodate and enable my husband as much as possible.
It means I need to lead the running of our house and family. From errands to school pick up. From house maintenance to sports commitments and playdate fun.
I’m tired. But I’m also grateful.
Because as much as this disease is stripping a lot away from our family, our family is still here. My husband still contributes in many ways. MS has not ripped away his humour or intellect, his love or patience.
We are still a family. Intact. We’ve merely adjusted to a new way of being.
And being open about this journey is something I’ve learned is incredibly important.
So today, my confession is that life is not easy with this disease. But we’ve learned a lot from it. Acceptance. The power of humour. Perseverance. And patience.
There. I’ve shared a piece of me and my life here on this blog. I hope you see it as an act of generosity like Jean-Luc suggested. And that from it, you take away some feeling of goodness in your heart.
18 Responses to “So here’s a confession”
Beautifully said. Thank you for being so vulnerable it so much courage. If more people would put their armor down and show their vulnerability, what a better world it would be.
You are so right, Van. It’s hard to do though!
Your vulnerability is as beautiful as the strength you show every day. Thank you for being so generous with your story.
Thanks, Mar. It’s not easy! I’m still uncomfortable with sharing but this disease is such a huge part of our lives. I can’t keep it in anymore.
I’m so glad you shared. We know what it’s like to live with a neurological disease and the things it steals. But we also knows how it binds us together in New and unexpected ways. May you find strength, peace, humour and love on this journey of grief and acceptance.
Thank you, Mary. It’s been a journey for our family but the support we’ve received is wonderful. We are grateful.
It was so wonderful to see you today ‘for reals’!
In addition to exercising and eating better, I pledge to you that I will personally hunt down and throat punch anyone that says ‘Have you tried essential oils?”
LOL, Nancy. I’ll hold you to that promise. 😉
Brett just passed this along… thanks for sharing Mel. I haven’t seen Jon for years but please tell him Steve and Mish are rootin’ for him.
Hi Steve – thanks. I’ll definitely pass your message on to Jon!
Thank you very much for sharing. I know a lot about living with MS. My mom was diagnosed with it six years before I was born. That life and family experience very much shaped who I am.
By her example, my mother taught me to celebrate everything. There always seemed to be balloons over the kitchen table.
She also taught me this: If you can’t dance with your legs, dance with your arms.
Thanks for sharing your own family experience with MS, Pam. It’s so true – celebrating everything is critical. This mindset has given us such gratitude, especially on the not-so-great days.
Thank you for sharing and allowing yourself to be open and vulnerable. Hugs.
ayala recently posted..Aiden Karl Ethan
Thank you, Ayala. I appreciate your support.
Such a lovely post, Mel – you can tell that both you and your husband are doing all you can to celebrate your life and family, and keep things positive for your daughter. I’m so happy you shared.
Lynn recently posted..Spirits
Thanks, Lynn! Yes – doing all we can. 🙂
This must have been a tough post to write, and I really admire you and your family for having the courage to share it. I don’t know a lot about MS, but the simple joy I see you sharing regularly online make me think that you all will make the best of it, together.
Thanks, Dani. Your kinds words and support mean a lot. 🙂