originally published Jun 4, 2013
This is not about education or NOLA so if that’s what you’re looking for, stop here and go read the Lens or Education Talk New Orleans, etc.
One night, in February 2007, I was introduced to a handsome, brooding, aloof, chain-smoking French guitarist called Gautier at a gig in London. Sparks flew. He visited me in Brighton two weeks later, proffering a typically Gallic shrug when I told him about my illness. I had been told that the effects of this drug on a growing foetus were unknown, so I mustn’t get pregnant; add all the post-surgery scar tissue and the fact that I could barely look after myself and having a child was not an option. Gautier was unfazed, while I was becoming used to having decisions made for me.
I flew to Gautier’s home town in France for his 30th birthday in March. He proposed that weekend. We married on an extraordinarily sunny day in September at Brighton’s Royal Pavilion. A cocktail of prescription painkillers enabled me to stand in my four-inch heels during the ceremony. He already thought me beautiful; it was my determination, I think, that he was beginning to admire.
I’ve gotten direct and second-hand commiseration, concern, sympathy, empathy, virtual pats on the arm or back, and it has been a pleasant surprise and soul-warming. I’ve also gotten and heard, What can I do? Tell me what I can do. Really, let me know, anything. That’s been…heartening. But also a dilemma.
Part, in many cases all, of the motivation behind these questions and semi-requests is sympathy, empathy, humanity, lovingkindness. It’s something you hear, fortunately, but never often enough, when you are seriously, acutely ill or chronically ill; people want to do something to not feel useless or powerless and to show that they really, deeply care and would’ve said all these things earlier if only they had known. Those who are closest know that there are many things that you can no longer do or find difficult or can’t manage for all kinds of reasons, or only because of the sometimes-overwhelming nature of your illness/condition, and that you need help of some kind, of many kinds, and the nuclear family can make help hard to get and desperately needed—there’s a lot more to do when only a small number are there to do. And my spouse is working hard to pick up my slack and be supportive and no day has enough hours.
Here are some things folks with chronic/invisible illnesses could use some help with but are too proud/embarrassed/self-conscious/thoughtful and loving to actually verbalize to ANYone:
- Offer to pick up some groceries rather than do the cooking. Many times people with illnesses have restrictive diets, so they may rather have some fresh fruits and vegetables than that casserole. Or ask what kind of meals she is eating and then freeze some of these for her to have on hand.
You might also offer to come over and help cook up something to freeze.
- Take the children out for a while so your friend can get some rest. Plan something special for the children and before you drop them off at the house, pick up a small “something” that will make their parent smile like some fresh flowers or balloons.
- Look around her home and see what needs to be done and then make an offer to do it. Do the tree branches need trimmed? The toilets cleaned? The carpet shampooed?
- …Rent her a fun movie and then drop by later to return it to the video store.
- Ask the person’s spouse how you can help the family. The spouse may be more willing to give you specifics about the family’s needs….[How to Help a Loved One with Chronic Illness—Lisa Copen]
- Offer specific forms of help – “I’m going to the grocery store, do you need anything?” or “Can I do some laundry for you?” Any number of household things, your friend might need help with. Offer to take care of it
- ….Volunteer to watch his or her children. Take the kids out for ice cream or to a movie to give your friend some peace.
- Offer to watch his kids during doctor appointments. It’s often hard to find so many babysitters, and taking kids to an important appointment isn’t always an option.
And it’s good enough to hear/see twice—
- …Ask the person’s partner how to best help the family. If there are a number of things to be done, organize a number of friends to help complete these chores….[How to Help a Friend with Chronic Illness]
And “How are you?” and “How are you feeling?” are often loaded questions a person with chronic illness may just not want to get into.
Don’t ever ask “How are you?” or “How are you feeling?” because the answer never changes and your friend doesn’t want to talk about it. Instead ask, “How is your day going?” or “Is there anything you need help with today?” [How to Help…]
The hardest thing to accept is that you may not be able to help, at that moment, for that thing, for more than a small moment of time or other than to be a caring witness.
The chronic nature is hard on the sufferer/patient and just as hard, but in different ways, for the witnesses.