‘How Are You?’ Can Be a Weighty Question
When someone asks how I am in passing, I know the script: “I’m fine. How are you?”
Sure, the question and response are meant to be pleasantries in our polite society, but since my husband has ALS, some days the question feels weighty. It stirs smoldering emotions, reigniting the embers of sadness, anger, and disappointment.
I might reply to people I know that “I keep on keeping on.” It feels a little more real. An honest-enough answer without ruining someone’s day.
I don’t say that “I’m really sad, and I think it’s going to be that way for a long time.”
When friends ask how Todd is doing, I usually give a factual status report, such as: “He’s had a cold for the last week, and I can’t leave him alone, because his lungs fill up and he needs assistance coughing. I only got out today because my mom is with him.”
Sometimes people are taken aback. “I’m sorry for putting you on the spot,” someone responded when I reported that Todd’s lung function had declined and he would need to get a feeding tube while he could still survive the surgery.
I didn’t feel on the spot.
The reality of what we deal with never leaves my mind. If I’m not in the mood to talk about it, I won’t. If I suspect the person will offer cures or platitudes, I won’t engage. But most of the time, I don’t mind giving the update. I’m glad when people care enough to ask.
Sometimes there is an assumption built into the question.
Someone I hadn’t seen in a while asked me whether Todd’s health had stabilized.
“No, it keeps on getting worse,” I said.
“That must be really hard,” she said.
“It is. Thanks,” I said.
I appreciate when people acknowledge the difficulty of what we deal with. Some people will ask with a compassionate look on their face and maybe even sit down next to me, expectantly, inviting me to process how I’m doing. I appreciate those who want to share the burden.
After a decade of dealing with the disease, others have quit asking. Perhaps they’ve heard the same answers from me and don’t expect anything different.
There are many times when even I don’t think about how I’m doing, like when I’m delighted to run into an old friend, and I ask about her before she’s had a chance to ask me.
“How are you?” I ask reflexively. What I really mean is, “I’m glad to see you.”
In that moment, I don’t consider that it may be a weighty for question for her, too.
***
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Comments
Linda Gundersen
hi kristin, thank you for expressing my thoughts and feeling. ever feel like screaming at the person: L feel like shit...how do you 'effing expect me to be doing when the love of my life is fading away before me.
Love your essays they help.
Thanks
Linda
Kristin Neva
So true. I had a line like that in my original draft but my husband edited it out.
Dave Reckonin
You're a believer Kristin; can you explain to me God's purpose in creating and implementing ALS upon his 'children ?
Genuine question, as I continue to seek a coherent answer to the conundrum, and no-one has been able to explain it without using their Bible-based gibberish glib meaningless phrases.
I'd rather like there to be a Celestial Big Brother looking out for us whilst we attempt to live decent, honest lives, but the evidence,
ie the real world we live in, points the opposite way.
Kristin Neva
Dave, I explore this theme in my third novel as my main character and I try to find peace with those questions that have no satisfactory answers. My book has been criticized by some because it doesn't tie things up with a neat bow--but basically, love keeps me hanging on to a different version of faith than I had a decade ago.
Dave Reckonin
Kristin , 'questions that have no satisfactory answers.'
All the answers are very clear and easily explainable if you or I accept that the Natural Sciences rule everything in our lives.
If we seek answers from a faith-based perspective then you are absolutely correct in saying there are 'no satisfactory answers.'
Rather than living my life in constant mesmerised bafflement about the 'God' thing, I choose to accept the clear explanations, the logic, reason and the rationality that science and knowledge abundantly provide. When I accept that clarity I accept my range of possible fates in an uncertain world, and because I accept it I am unafraid.
Kristin Neva
I understand why people end up where you are. I guess I continue to wrestle with faith from within the faith camp because I see other unanswerable questions on the outside.
Erin Howe
Hello, I'd like to make a comment about the question about God implementing ALS on his children. I don't believe he puts diseases on his children. Just because a person is a Christians doesn't mean they will have a perfect life. We all will have difficult times or maybe even suffering. Some more than others. Some things we will never understand, only God know why. What you can count on is God walking through these "valleys" with his children.
I just take it one day at a time and I try to just enjoy each day my husband and I have together. My husband was diagnosed with Bulbar ALS in May of 2019. He hasn't spoken since the fall of 2019 and has been on a feeding tube since October of 2019, not being able to eat or drink anything. Sometimes it is hard to keep a positive attitude and also find words of encouragement for him to keep him going forward. At the start of each day, I just ask God to get us through
the day and help us do the things he would have us do. I couldn't imagine going through this without my faith in God. Nobody is guaranteed tomorrow, so we just need to try and find little things to enjoy and be thankful for each day.
Sally Webster
I have inherited ALS & live alone with no help. Both my feet are paralysed & my hands have recently become involved.
Would appreciate some support.
Ronald Janca
“I am Blessed.”
Many find that answer odd. And I can understand why especially since I am living with C9orf72.
Starting in 2017, I felt like that I worked through a process of dealing with every emotion known to mankind. God certainly did not consult me in the process, nor did He have to. But He so graciously gave me opportunities to make choices on how I could respond to this tragedy. I quickly learned that I just needed to have faith in God and accept His work in me.
Lately, my life has been about helping the family tree discover and understand the seriousness of this disease. It’s also been about being placed in position to start an interventional trial that is now in “open label”.
On this day, my health is harshly being challenged and I struggle. Yet I am still here to love and cherish my time with my wife and grown children. And I live to love and to serve as my health permits.
I am indeed blessed.
www.RonsStory.com
Alex
Kristin, your words are insightful and helpful. Thank you for sharing your validating words.