Guidelines for Helping Someone Facing a Life-Changing Crisis

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

DOs

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 out there. 
  
• “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.

DON’Ts

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.

GRAY AREA

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. 

Holiday Reflections

We're still getting used to the combination of celebrating the holidays and living with a spinal cord injury. This is Jeff's second Christmas since his injury. (Well, technically it's his third, but the first one was spent in the hospital, so we don't officially count that one.)

The holidays are tricky enough on their own - but pile on a spinal cord injury that takes up a lot of your time in managing and wreaks havoc on your emotions ... oh! It's just a lot to deal with.

I've often described life with a spinal cord injury as a roller coaster ride. Some parts are smooth and calm, others whip you around unexpectedly. And sometimes it's downright terrifying. I think we experienced a little of all these during this holiday season.

This year - the day after Thanksgiving - I climbed on the ladder and got down all the Christmas boxes. I searched for and untangled what felt like miles of extension cords. I got an outdoor timer and ran said cords from the outlet by the front door to our front yard. I plugged in splitters and ran more extension cords. I put together our flimsy lighted reindeer (now held together with zip ties and foul words). I strategically placed an inflatable Santa and teddy bear in our yard and staked them down. I put net lights on a couple bushes.

I stood back and admired my work, and let the realization I knew was coming just happen.

This is all the stuff Jeff used to do. All this outdoor stuff with wires and plugs and lights and zip ties. It's all mine now. Transferred to me not because he no longer wanted it. But because he no longer could do it.

I don't mind doing it. It's just times like this that I really wish it still belonged to him.

Nonetheless, we survived the decorations and the Christmas spirit was fervently felt in our new home. One night, on a whim, Jeff said, "Let's go get Starbucks." It was just after dinner and I was feeling a little wiped out if I'm being honest. I looked at him with an expression that said, I really don't think I have the energy for this. But in the blink of an eye, Evie was standing next to me wearing her jacket, her boots, and a toothy grin. And Jeff was already bundled up (as usual), and was ready - and eager - to head out.

"Let's do it," I said, reluctantly picking myself up off the couch.

I backed out the van, Evie and I quickly got Jeff strapped down and secured in it, we then got ourselves buckled in, and we were off. We got holiday flavored drinks and gingerbread cookies with sweet icing from the drive-thru. Then we drove around our neighborhood and oohed and aahed over the lights. We came home and enjoyed our treats.

And we did it all spontaneously.

And it was easy.

(Those two things right there - spontaneity and ease - both happening at the same time is something anyone living with an SCI would deem a Christmas miracle. That's surely what it felt like to us.)

But a few days later, our Christmas spirit was challenged. It had been a long, funky day. Evie was sick - running a fever and just feeling like crap. Jeff was a little under the weather too, but his main symptom was grumpy. I was the nurse who would randomly and frequently stick the thermometer in my patients' ears and ask "How do you feel?" to which I got the following answers, "Not too good, Mama," and "Well, you keep telling me I have a fever, but I feel fine!"

By the time dinner rolled around, things were in a downward spiral. Normally, we all eat a meal as a family. Tonight was different. We were all eating whatever we wanted. The three of us were sitting at our dinner table, all in a row. Usually Evie sits across from me and Jeff, but with her lingering yuckies, she was stuck to my side like glue, wrapped in a blanket, and croaning (that's crying and moaning at the same time.) Her dinner was an orange Otterpop. I was feeding Jeff his equally unhealthy dinner and also trying to fuel my own body with the questionable combination of mac-n-cheese and wine.

From the right: "I'm not hungry. My belly hurts. Can I have another Otterpop?"

From the left: "Can you lean me back? Can you wipe my eyes? Can you put more salsa on my next bite?"

Ohmygod.

I was having a genuine "stuck in the middle" moment.

I broke down that night as I was putting Jeff to bed. I went on and on about feeling stuck in the middle - always the one asking everyone else how they're doing - always the one fixing things and getting things and doing things and handling things - never being asked if I'm okay or if I need anything. And with tears in my eyes, feeling ridiculous once all my feelings came pouring out, I apologized to my husband for not handling everything gracefully.

He looked at me and simply and calmly said, "It's okay." Because he, more than anyone else, understands how the stress of this life can consume you.

This funk lasted a couple more days and culminated on the night when everyone finally started feeling better. We were again just sitting down to dinner when Evie accidentally spilled Jeff's water all over the floor. She and I sprung into action with towels. She was trying her best to wipe up the puddles while I was furiously sopping it all up. Jeff backed up just out of  range of the water. After nearly throwing out my shoulder with the wiping, Jeff said, "That's probably good."

"No it's not," I snapped, my frustrations boiling furiously. "It's not dry. If I don't get it all dry, your tires are just going to make it worse." My mood was evident in my tone.

Evie tried to lighten the scene by being cute and funny. "We're all wiping up the floor. Everyone but Daddy. He never has to help clean the floor."

"Believe me, sweetheart" I said through gritted teeth. "Daddy would much rather be down on the floor helping us right now rather than be stuck in that chair."

My words and tone were harsh. But they were a true reflection of my feelings in that moment.

We wiped in silence for a few more seconds. Then Evie's small, quiet voice said, "I know what I want for Christmas ..." I stopped wiping, sat back on my heels, and looked right at her. I knew what was coming.

"I want Daddy to be able to move again," and on the word move, she threw up her arms and held them in the air while she smiled.

"I want that too, Babe." said Jeff quietly.

"It's what we all want, Sweetie," I chimed in, my voice back to normal. "But that's not how it works. That's not going to happen."

"I know," she said, and she went back to wiping.

And just like that, my pot having boiled over, my sweet daughter - and my brave husband - helped me clean up the mess and simply move on.

And after dinner, our evening took a pleasant turn. As I was cleaning up, I heard Evie ask Jeff, "Daddy - you wanna pull me around in the laundry basket?"

Without hesitation, Jeff said, "Heck yeah!" and he started giving instructions. He told Evie to get the basket and the bath mat, and asked me to take a time-out from cleaning up and get the orange tie down.

A week earlier, we'd discovered a way for Jeff and Evie to do something they had enjoyed doing before Jeff's injury. When Evie was smaller, Jeff would pull her around the house in a bucket, basket, empty box - anything he could find that she would fit into. He'd rig up a strap, and holding it in his strong hands, he would pull her along behind while he walked all over the house - even down a short flight of stairs in an old place we lived in. She would squeal with delight. They both loved it.

So tonight, Evie turned the bath mat upside down and placed the laundry basket on it. I secured the tie down around the back of Jeff's chair and onto the basket. Evie hopped in, Jeff adjusted the speed on his chair, pushed the controller forward with his chin, and they were off.

I finished the clean up then sat at the kitchen table and watched them have fun. Jeff would drive her into the bedroom, make a u-turn, then come down the hall, where he would make a tight turn around the corner in order for the basket to slide out to the side around the corner. Evie gave a little scream and they both laughed.

Their laughter filled me up and made the Christmas lights in our house sparkle a little brighter that night.

And so the roller coaster of this SCI life was back on the top again. Back to where there's a calm, and you feel happy, and a genuine smile crosses your face. We've hit some roughness since that night, but also had more smiles. It's truly been an up and down holiday season: tears and frustrations mixed with happiness and love.

Tomorrow the decorations will start coming down. I'll once again get out the ladder and do all the jobs that I inherited after my husband became paralyzed. And he'll watch me, wanting nothing more than to just do them himself.

Soon we'll say goodbye to 2015, and move on to 2016 where we'll enter the third year of this new life.

We hope it will be a good one. We know it'll have ups and downs like the others that have come before.

At least we've got a good grip on it now - and we're doing our best to hang on.