In the days and weeks following my husband’s spinal cord injury, life felt like it was spinning out of control. Like I was at the helm of a space ship that was hurtling through the darkness, and no matter how much I pulled at the controls, I couldn’t make heads or tails of my position.
Jeff's ICU Room
My days were fragmented into “get this done right now” chunks. I was on the phone with case workers, dealing with medical insurance claims, figuring out how to report a leave of absence to my work, communicating with nurses, and doctors, and hospital staff. All the while I barely left my husband’s side. Because together we were facing the mammoth task of figuring out how to live the rest of our lives with him now paralyzed from the neck down.
And behind all this was the people surrounding us. Supporting us. Wanting to help us. Scared to death of us. Some did things without being asked. Some weren’t sure what to do. Some quietly disappeared into the background, too scared to look me in the eye because of this awful, unimaginable thing that had happened.
Compassion poured in. I witnessed some truly kind and selfless acts in those early days. And on the flip side, I also heard some astounding words out of the mouths of strangers, friends even, that made me question their ability to comprehend the situation at hand. But such is the way it goes when crisis hits home.
I’ve been thinking about this topic lately – about what to do when someone you know is going through a life-changing crisis - and was inspired to write about it after reading a similar post by Amanda from Cocktails & Chemo. Amanda’s husband Joe passed away from colon cancer in 2014. She writes about their journey in an honest and open way, and I love reading what she has to say.
Like Amanda, I belong to an online support group of women who are in a similar situation as mine. This group is made up of the wives and partners of men who have survived a spinal cord injury. And since a great many of these women have experienced the same crisis I did, I reached out to them for their take on 1. What was helpful to them and 2. What was not so helpful as they navigated the bumpy, frightening road of paralysis.
So if you know someone who is facing a life-changing crisis, here’s some words on the Dos and Don’ts (and one in a gray area all on its own) of how you can help.
Evie's first visit to see Daddy after his injury
Make meals: Families in crisis don’t have time to think about, let alone make meals.
- Meal deliveries was one of the best things that people did for us while Jeff was in the hospital. I was usually either coming or going around dinner time in those early days, so for me, the best meals came in aluminum containers with covers so that I could either heat them up in the oven right then, or put them in the freezer for later.
Make a donation: Financial donations are immensely helpful to a family in crisis.
- Oftentimes, jobs are lost (or at the very least, put on hold) when a life-changing injury occurs. Donations help alleviate some of the stress of lost wages. And they are especially helpful in the long run for things that insurance doesn’t cover like home modifications, adapted vehicles, and caregiver costs.
- Cash sent in a card is also helpful. I never used to carry cash before Jeff’s injury. But once I was spending time in the hospital, eating at the cafeteria, buying items from the vending machine, and stopping by the coffee hut outside the hospital entrance, the cash we received in cards came in so very handy.
- Gift cards: Jeff’s co-workers pitched in and got us a bunch of gift cards within three days of his injury. Cards to restaurants and grocery stores were really useful. One member of my support group also suggests a gift card to the hospital cafeteria - great advice!
Be a Go-To Person: If you have the time and are willing to make the commitment, consider being a “go-to” or “get-it-done” person.
- A “go-to” person often does things without being
asked. An example of this was my sister-in-law Cathy who came to visit from out
of state several times during Jeff’s hospitalization. She would run errands and
pick up stuff for the house without me asking. These people tend to be very
observant and have good intuition. Cathy would notice that I was running low on
things like toilet paper and body wash, or that the cereal and milk needed replenishing.
So she would stock up. Huge help.
- Be the person to set up an online donation site
and help coordinate an email blast or social media share to get the information
- “Set up an online meal sign up system, and help figure out
the best way for people to drop meals off for the family in crisis. The less
coordinating and communicating the family in crisis has to do, the better.”
- Be a point person - someone that gets things done: “I
have a friend I text and ask her to find me a babysitter for such a date and
she does the rest. Really helpful.”
- Be a communication manager. “Having someone intercept
and disseminate information to friends and family, and handle the updates while
we are dealing with everything at the hospital is very helpful. I spent so much
time updating people individually and in groups and answering questions it
caused me more trauma than the trauma I was actually dealing with!
*Thanks to the ladies in my support group for providing these great suggestions.
Do little things: Sometimes the little things turn out to be the really meaningful things.
- Send a card. If you’re far away and can’t offer physical help, just send a card. I saved every single card and note we received following Jeff’s injury (and I’m not usually a card saver). They were great reminders that people were concerned about us.
- Say something simple. I’m so sorry this happened. I’m thinking of you. We love you. Now’s not the time to be long-winded – keeping it brief and heartfelt is best. And remember that it’s okay to admit that you don’t know what to say. Understand that there’s nothing you actually can say that will truly make things better. All you can do is support and show compassion – and that combination goes a long way.
Now that we’ve covered the Dos, here are some things that it might be best to avoid doing when your loved one is in crisis.
Don’t show up at the hospital unannounced
- If you do, don’t be surprised if you can’t see the patient or talk to the spouse. Being in the hospital after a life-changing injury or diagnosis is chaotic. Jeff’s room was constantly filled with nurses, therapists, doctors, and case managers. And sometimes Jeff and I were in the middle of an emotional breakdown. Seeing visitors during these times just added to the feeling of being overwhelmed. Coordinating a time to come by for a brief visit worked so much better for us.
Don’t try to make things better with cliché phrases
- Don’t say things like “This experience will make you a better person” or “Everything happens for a reason.” I just read a really great article on this topic. The author contends that phrases like these are “nothing more than platitudes cloaked as sophistication.” And he’s right. Because the last thing I wanted to hear was that there was some unknown but very good reason that my husband was now lying in a hospital bed paralyzed from the neck down.
Don’t tell me a story
- Don’t tell me about your cousin’s roommate’s uncle who had almost the exact same injury a few years ago but who is fine now. I know you’re trying to be positive by sharing this information, but the reality is that most spinal cord injuries do not turn out “fine.” And sharing stories like this can unintentionally lead to false hope.
Don’t be afraid of me
- I remember taking Evie to a birthday party in our neighborhood while Jeff was still in the hospital. Everyone there knew about the accident. A few people bravely approached me and asked about Jeff. Most people waved to me from afar or avoided me altogether. In situations like this, you have to suck it up and face the looming elephant in the room. Believe me, any discomfort you feel in asking me about my paralyzed husband is nothing next to the devastation I feel about it. Even if you don’t know what to say, a hug and a quick, “I’m thinking about you,” is better than pretending I’m not there.
I’ve put this one in its own category. Because it’s one of those that can go either way. I’ve read some articles where people going through crisis hate to hear it. And others say it is really helpful. So here it is:
“Let me know how I can help.”
Most of the time it’s said with sincerity (although, yes, sometimes it can be an empty parting phrase – I think it really depends on the relationship between the person who says it and the person in crisis). But I truly think that most people who say this are more than willing to help . . .
They just don’t know what to do.
The problem here is that by saying “Let me know how I can help,” the action is put onto the person in crisis. The person who has a million things to think about in the next 5 minutes. The person who, very likely, doesn’t even know what he or she needs right now.
Perhaps a better way of phrasing this is by being more specific:
- Can I bring you dinner
a couple nights this week?
- Can I take the kids on
a play date tomorrow afternoon so you can have some time to get things done?
- Can I do your laundry?
This way, there’s only two options for the person in crisis: yes or no. (And don’t be offended by a “no” answer - it’s not personal.) Because it’s much easier and faster to answer a ‘yes or no’ question rather than an open-ended one. And your role as the friend/family member/helper is to make things easier for the person going through this crisis.
* * * * * * * *
Life-changing injuries are something no one wants to experience or deal with. But the reality is that they do happen. And they’re difficult. For everyone involved.
Remember that support – be it large or small - really is the best thing you can offer someone going through a crisis. It helped us immensely.
I hope that these guidelines might make things a little easier when the time comes to face the unthinkable.