Wednesday, 15 March 2017

I'm Having A Bad Day

I am having a really tough morning, one of those mornings where the weakness seems so much worse than other days, where the tiredness is Mt. Everest, where the aches and pains are draining me. My arms were too weak to pick my legs today; I needed a lot of help getting dressed. Chewing a grilled cheese sandwich for breakfast seemed like a lot of work for little reward. My water mug, even my coffee cup, felt too heavy to lift.

This is really a sad, shitty way to go. It's even worse to do it alone, without emotional or physical intimacy. The tediousness of a slow, painful descent unto death, the weariness of a soul simply seeking rest, a respite from life; I am so done with with disease, yet I am in no way ready to die. I love life too much, yet I find myself thinking more and more that dying sooner, rather than later, would be a good thing.

I am at an angry place right now, frustrated by all that ALS has destroyed in my life. I'm tired of people telling me to be grateful for what I have instead of complaining about what I've lost, especially people who have lost nothing at all. Those with true life losses understand much better what I am going through. Of course I am angry. It's natural.

These are the last weeks and months of my life. I am starting to think seriously about my exit plan, even an exit date. I am wondering how long my arms will hold out, what I will do after they have failed me completely, how I will live then. I think about what will happen when I am in bed at night, alone, unable to roll over or shift, unable to adjust a pillow or lift a sheet. Already my quilt is getting to be too much to lift, too heavy for me to move.

Today is a bad day, and I will face it solo. There is nobody here to hold me, to show me the affection and intimacy that will swallow up these tears of pain. There is nobody here to help me up or down, one or off my couch, in or out of my wheelchair. I do this all alone. I'll tell you, it takes a shitload of courage and strength to keep going in the face of these insurmountable odds. I don't know why I do it, except I see no other way. I just have to keep going, for a little while. Then I will rest.


  1. I'm sorry your having a suck #%^ day, with no real end in sight. I'm equally sorry you have no
    Person to share this burden with.

  2. Me too, Richard. I am so sorry. I think of you and Sarah daily. Although Sarah has Rob, she has indicated their relationship has changed to the point of caregiver and patient. It is so sad, what this ugly disease does... it kills relationships as it kills the patient. Families dissolve under the stress of ALS. And it wreaks havoc financially to the point that your children cannot afford to come to take care of you. I hate that one day you can plan a vacation a month ahead, and the next you feel so terribly weak and lonely that life feels hardly worth living anymore! I hope you can sleep well tonight and awaken to find your arms feel a little better, instead of a little weaker. It feels like this relentless rain in Oregon is really manifesting tears of sorrow on your behalf Richard. Sending love from

  3. Hi Richard, my mom has als as well. I can't imagine how you're doing this yourself. It truly takes strength and courage. Today is a bad day, I can tell you have loads of both. Holding your hand across the miles and hoping tomorrow is a better day.

  4. I'm sad you don't have katherine in your life...