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.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?