Marianne Has ALS

You would think that with ALS my greatest fear would be dying, or the slow loss of control over my body. I think about both…pretty frequently, but one (spoiler alert there will be more fear posts!) of my biggest fears is isolation.

Right now I look and function as a slightly slower version of myself. If I didn’t tell you I had ALS you wouldn’t know. I can still walk, talk, eat, give hugs, and breathe. I know that I won’t lose everything all at once, but as my body changes, as my speech becomes slurred, or I begin to drool I fear it will be harder for people to be near me, care about me, and ultimately love me.

My greatest fear is lonliness due to isolation, a lack of love when loving is hard, of dying alone and avoided (not forgotten). Jacob has made it clear that he’s here for every step of this journey – but fear is fear, and this one looms over me each and every day.