Post 12: Awful, How are You?

Moments of doing fantastic

Awful, How are You?

How are you? This usually innocuous strand of words appears, the phone’s glow hitting like the bare bulb dangling in an interrogation room.

(Shields eyes) Ah! I swear I don’t know how I am doing!!!

I appreciate the intent…but it’s just so hard to answer. Usually I stare at the words then don’t answer for hours or days. When you’re going through some shit and everyone knows it “how are you” ceases to be a common pleasantry because the person asking is looking for a real answer. You have lost the privilege of a “good” in response. When asked in person, the inquisition is often accompanied by sad eyes that further beg for an honest response. There is a polite, perfunctory response or an in-depth honest response and not much in between. There’s also the mythical response I’ve read about: “I’m dying a slow and painful death, how the fuck do you think I am?!” I admire those who can give that response but even though it crosses my mind I’m just not there yet. I reserve the right to turn into this person in the future.

I know this paralysis by sentence is not unique to ALS patients - whether it’s serious illness, a crumbling relationship, the loss of a loved one or some other dire situation, those 3 little words can feel so heavy and impossible to answer adequately. To clarify, I do NOT want to dissuade people from asking me or other members of the Shitty Situation Club how we are. It shows you care. Just know it’s a complicated question and you may get an abbreviated answer, because really everyone wants to be able to give a courtesy reply should they choose.

But, for those curious, generally the answer for me is the following:

I am happy to be alive

I am grieving the loss of my abilities

I miss my old life and imagined future life

I miss you. If that gives even the tiniest twang in your heart, it is meant for you

I am foolishly optimistic bordering on delusional

I am angry and frustrated that I can’t walk or talk well

I love life and people so much that I don’t want to leave - I desperately want more of life

I am beyond grateful for support from family and friends

I am envious of able bodied people and the elderly

I am scared of the physical future for me

I am scared of the mental and emotional future for my kids

I laugh a lot every day and it’s the best remedy I’ve found for terminal illness

I hate that my husband has to deal with this

I give myself pep talks for the simplest of tasks, a “you can do it” to my legs to push up from a chair

I am surrounded by loved ones and in awe of their generosity

I am tired from day to day existing and waking up 6+ times a night out of discomfort

I am in pain from involuntarily tight muscles despite being on a maximum dose of muscle relaxers

I feel lucky to be able to do many things independently, such as eat, drink, and type on my phone

I am self conscious of how I look and sound

I grow more in love with my kids and husband every day

I am still in disbelief that this is happening to me, to us

I find joy in people, writing, reading, retail therapy, the outdoors, and Jeni’s ice cream

I’m sad, sad, sad that I can’t be the mom and wife my family deserves

I find comfort in talking to others living with ALS

I am adapting to slowly losing abilities because I have no other choice

I’m surprised at what one can adapt to

I escape reality in sleep, memories, and rom-coms

I feel lost at how to make my remaining time most meaningful

i am more content with less than ever before

I feel like I’m in a ballet set to sad music, so the beauty of the dancers and costumes make the music not entirely sad, and the sadness of the music makes the beauty of the rest more complicated and dark. But nevertheless it is a fine work of art.

I knew a woman who, every day without fail when I asked her how she was, responded “doin ok.” In a world where some shade of “good” is the only socially acceptable answer, this struck me as refreshingly honest. Ironically, the only time some version of awful is comfortable or acceptable is when you are going through something temporary and not actually awful, to such a tune as “oh I’m horrible, this cold is the worst.” That is a safe horrible we can all relate to and indulge in. But when you’re truly low and there is no amount of rest and fluids that will fix it, people don’t know what to do with that. I suggest allowing it and sitting with it. But back to the in between - ok is not great but it’s not terrible either. Ok is dealing with hardship but relying on coping strategies and being grateful and hopeful at the same time. Ok is more than enough. Most days, I really am doing ok.

With friends like these, it’s hard to not be ok