Wednesday, 4 December 2013

Standing Alone

I am in a difficult emotional place these days. Of course, with ALS I am almost always in a difficult emotional place. Where I am right now is different. I don't know if it is brought on by the challenges of the winter storm the other day, by the time of year, or by the fact that I am now about a year past my diagnosis; one down, two to go. No matter. Where I am emotionally these days is just another part of ALS.

I feel very alone these days. This is not loneliness; I know very well what that looks like. In fact I am surrounded by people these days. There are friends who check in on me, friends coming over, friends when I go out at night, business contacts, social contacts, lots of people around me. I am not alone in the physical sense, yet I feel very alone, very solitary in the midst of this human crowd. In addition to feeling my physical isolation growing, I can feel my emotional isolation growing.

Part of this is most certainly that I am home alone. This apartment is very quiet with only me, just tip-tapping away on the softly dampened keys of my laptop, listening to the clock on the wall behind me, nothing but the glow of the deep southern sun shrouded by morning weakness, edging just a bit of yellow tinge onto the walls of my living room. The noise below is muted by the snow, the silence is all I have.

Those of us with ALS know this sense of feeling alone all too well. There are so few of us, only a handful for every 100,000 "normal" people. Here in Calgary you could barely fill a city bus with us, assuming you could get us out of our wheelchairs and safely on board. The online community is vibrant and active, but I am the kind of person who lives for human contact, shared conversation, the interactions of life. Still, I talk and text with other PALS and they too have this sense of solo, this feeling of being the only one in the room.

Caregivers for ALS must feel this too. I do not yet have a caregiver; I still take care of myself. Perhaps this is a part of that aloneness I feel, I don't really know. All I know for sure is that these days I feel more and more like I am standing by myself, singing alone in a forest, or perhaps whistling alone in the dark. I just feel like I am the only one here. Even if you were standing beside me, I would still feel this way.


  1. I wish We could come and be there for you but it would not help as you say. You would still be alone. It is sad honey.

  2. Sorry you feel this way. Since I moved into a care facility I kind of feel the reverse, too many people ! I have a good team around me to help me. And my neighbours here although not PALs are in a similar boat, just with different critical or terminal illnesses. So I don't feel alone. Hope you find good support, being alone in this isn't good.

    1. Hi Carol.

      More than anything it is the sense of emotional aloneness, not loneliness. I am glad you have found a place where you feel cared for. I'll be okay; I've spent most of my life looking after others as well as myself.