It’s not all bad 🖤
I know that the world can be a not so safe space for us, and how difficult it can be to suffer in silence. When I was diagnosed, the shame and guilt and fear and unkown crippled me for months. Navigating the emotions and experiences was a challenge like I have never experienced before. Combine that with the pandemic, world events and a really long job search, I was the lowest I have ever been.
MS changed my life. I don’t think there is an area of me that isn’t forced to coexist and share space with multiple sclerosis.
What I have discovered is my survival is dependent on how I view that I have two options: I can fight the disease, and ignore her in my mind. This usually results in paying a price: my mental or physical health are greatly and adversly effected when I deny my illness. The other option is to work with her. I acknowledge her. We aren’t friends, but we are on this journey together.
When MS calls, I answer. She is second only to my wife and children. If it’s anything or anyone else, she wins. Canceled plans, dirty dishes, half folded loads of laundry.
I’ve missed birthday parties and concerts, work happy hours and a lot of phone calls.
At my last neurology appointment, I became really emotional at an attending with very bad bedside manner. I knew my doctor had heard about my ‘emotional instability’ from the attending when he entered the room, and I immediately tried to defend myself.
“I wait 6, sometimes 8 months to see you, and I have questions,” I asserted. “Is this how my life is going to be?”
“Well,” he made very direct eye contact, “You do have MS.”
After that visit, I decided I would learn to love the one I’m with.
She is really needy, and I tell her no when my children are vying for my attention. Otherwise, we lie down a lot. We find joy in freedom from the things that consume my thoughts; we don’t have space for those things. MS had really caused me to slow down, live in the moment, and be gentle with myself.
I am no longer ashamed of my illness. We are warriors, we are winners. Just because other people will never know what our experience is like doesn’t make it any less valid.
Every day with MS is different. The challenges are great. Finding joy, finding acceptance, having realistic expectations are some of my many daily struggles.
My relat with my wife is the best it has ever been. MS has forced me to be the most authentic version of myself. My interactions are more quality over quantity, and I give myself grace for the first time in my life. My time is precious; so is my sleep.
In my experience, my perspective is everything. I think it makes some people uncomfortable, but I figure if I have to live with it I am going to talk about it. Life isn’t always fair, or equitable, and I am doing a damn good job.