I shouldn’t be surprised, but I am. It is happening in real time. To me, to us.
My husband sees it too. I can tell it breaks his heart, but he stays strong for me. Staying honest as he tries to soften the blow when I ask him directly, “Have I gotten worse?” He has known me since I was 14 years old. He is the closest person to me and sees the changes day in and day out.
We celebrate the good days, taking time to acknowledge them. Today you seemed stronger, he says. Did you realize it? I can tell; it was a good day. Yes, I agree, I say, secretly thrilled that he saw it too.
But its fleeting. It never sticks. A tease.
It feels different than I envisioned. The physical decline, that is. Like not even close. Makes me wonder why I spend so much time thinking about how anything is going to turn out. One never really knows.
I envisioned quick and overnight.
When I was young, I used to envision quick and overnight when thinking of a miraculous cure. In my vision, I would rise from my bed, and take a step only to realize I had been healed by some divine power in my slumber.
My vision has changed in some ways. It has remained the same in terms of quickness. But the end outcome has turned into a vision of being stripped of any independence overnight, my body overtaken by a less-than-spiritual power.
The reality is that it is more of a slow and painful burn, sneaky. Not quick and overnight. Not like a rip the Band-Aid off in one quick motion, but more of a slow and painful tug. Giving me just enough time to be cognizant of the pain of loss before digesting another.
I naively thought I would somehow have the power to stop it. If only I worked harder. Some may look at me and falsely judge me that way, but I know better now. I cannot stop it. It was just false hope disguised as reality.
That will not stop me from fighting, though. I doubt I will ever stop fighting. I hope I don’t.
I feel like two people sometimes. The one this is happening to, and the one who is watching it happen.
I find myself hesitating to share my true reality with others. They will not grasp the terror of how this feels. I fear I will feel diminished and alone. Yet, here I am, sharing this with all of you.
Isn’t that why we keep so much pain to ourselves? We are afraid of not being fully understood, so we keep it inside. Hoarding it like some valuable treasure.
I am 51, but most days I feel like I move as if I’m 81. My body feeling so much older than my mind. I feel angry, sad, trapped, and frustrated more than I would like to.
I feel guilty at the order of things. I should be strong for others at this age. I want to live a full and vibrant life. I do not want to strip this time away from my family. They deserve more.
It is sobering to think back on all the years I spent wondering about these days I am currently living in. In some ways, it does not seem as bad as I imagined, and in other ways worse.
I always imagined my physical losses to be big losses all at once, but many are small. Things you would not necessarily think you would miss, but you do when they are gone. Things that others would say, that is no big deal, until it happens to them.
I shouldn’t be surprised, but I am. Surprised at what a powerful reminder this is to me to honor every ability I have. Grateful for the forced reminder to be thankful for the little things.
Each independence we have is worth ruminating on and appreciating.
Until next time …
Amy Shinneman is a former National Ambassador for the Muscular Dystrophy Association, disability blogger, freelance writer, wife, and mom of two boys. You can find her blog at humblycourageous.com and reach her on Instagram @ashinneman.