Tuesday, October 18, 2016

I'm Not in a Bad Mood - I Just Have My Game Face On

"I want you to be happier, Mama."

The soft voice of my seven-year-old daughter snapped me out of my thoughts and brought me back to the present.

"Oh, I'm not unhappy, Sweetie," I told her reassuringly. I smiled at her to make sure she knew I was telling her the truth.

"I thought you were upset," she continued. "You had your mad face on just now."

Moments before, I was in the bathroom getting ready to head out of the house with my family. We were planning to visit my dad's new place about 7 miles from our home, and it was about 30 minutes before our departure time.

I was standing in front of the bathroom mirror when Evie came in. I was in a deep state of concentration. In my mind, I was going over the checklist of supplies I'd packed for our outing:

Suction machine is charged and packed. Check.

External power supply is packed under the back seat in case Jeff's vent battery fails. Check.

"Go Bag" full of one of each supply we'd need in case of emergency is in the back of the van. Check.

Did I pack the nitro paste in case of AD? Yes, front pocket of Go Bag. Check.

Don't forget the portable ramp. It'll be the last thing you put in the van - just behind Jeff's chair.

I was visualizing all of the supplies on my checklist, so when Evie came in, I didn't even know she was there at first. And so it turns out that what she thought was my mad face was actually my game face.

Because so much of this life is about preparing. Any time we leave the house, no matter how long we plan to be gone, we are consumed with preparations. Long gone are the days of grabbing keys and wallet and hopping in the car. Now it's about creating a What If list then making sure we're covered should that What If come to pass. I'm fully aware that living life constantly worrying about unlikely or unfortunate scenarios manifesting themselves is rather unhealthy, but when you live with a spinal cord injury, facing life unprepared is both irresponsible and dangerous.

Evie's misinterpretation of my mood based on my facial expressions got me thinking about how others may perceive me. While I try to strike a balance in being appropriately lighthearted or serious given the situation, the truth is that the seriousness more often wins out.

I often feel that others might perceive me as anti-social because I can never truly offer them my full and extended attention. As a caregiver to a husband who is paralyzed from the neck down and on a ventilator, I always have one ear open to listen out for him. Throw in being a mom to a seven year old, and I am perpetually distracted. My attention is constantly ping-ponging between them.

For example, on early evenings when the weather is beautiful, Evie likes to spend time out front scootering up and down our street - seeing if there are other kids on the street who are doing the same thing. There usually are on these nights. And their parents are out too.

Most evenings like this, Jeff typically stays inside the house because what feels like a light breeze to us feels like a frigid wind tunnel to him. So he stays warm and cozy in the house while Evie plays away in the front yard or in the street. And I position myself in the middle. Right where I can hear Jeff and see Evie. Some evenings I see parents of the kids along the street hanging out and having conversations. I wave to them, smile, and sip my wine. But rarely do I break that invisible barrier at the end of our driveway. I have, on occasion, had more than just a "Hi, how are you"conversation with some of the neighbors, but that's only when someone is inside the house with Jeff. If he's alone, I keep the conversations brief, oftentimes politely cutting the chat short and excusing myself to check on my husband.

And most of the time, he doesn't even need me. He's fine.

But it only takes one time of him not being fine and me not being there to make this already difficult life unbearable.

I remember the weeks following Jeff's injury - those awful days where everything was so scary and uncertain. Jeff was so weak. His body couldn't tolerate being off the vent for even a few seconds. His anxiety level was at an all time high.

The only source of comfort for him was me.

One night a new nurse was doing Jeff's trach care which involved taking the air off, removing, cleaning, and replacing his inner cannula, then reattaching the air. I told the nurse that she had to be quick because Jeff couldn't be off of the air for more than a few seconds.

Perhaps she didn't hear me.

When she took the air off and began to clean the inner cannula, I could tell she was working too slowly.

My face was right next to Jeff's. I tried coaching him through this in a calm voice. "You're okay," I said, trying not to let him know my heart was beating frantically as he struggled to fill his lungs with air while the ventilator blew on his chest instead of into his airway. "The air is coming right back on in a second," I continued hoping my words would make the nurse work faster.

But she wasn't fast enough. And Jeff couldn't hold on. I watched helplessly as his world started to fade away. The blood drained out of his face, his eyes rolled backward, and his head slouched to one side.

The alarms began to sound. The nurse jumped. She clearly hadn't expected him to pass out. She clicked his cannula back in place, and I jammed the air back onto his trach. I held Jeff's face in my hands and patted his cheeks. This had happened once before, so at least I was prepared even if the nurse wasn't. "Come on back, Jeff." I told him. "Come on sweetie." His body was breathing again, but his brain hadn't caught up yet.  I patted the area where his neck meets his shoulders, knowing he could still feel there too. "Jeff. Jeff. Come on Jeff. Come back." My voice was shaking, but I kept steadily demanding him to come back to me.

Finally his eyes fluttered open and his head shook. He was confused and frightened. It took him a second to remember where he was.

"Hi sweetie," I said as relief washed over me. "You're okay. You're okay." I was telling myself this as much as I was telling him.

After he processed what had just happened, his face contorted into sadness, anger, and fear all at once, and he whispered, "I thought I died just now." I hugged him and put my forehead to his. All we could do was look at one another and cry. How could this possibly be our world now?

I'll never forget this incident. He had a few others like this in the hospital, but this one stands out to me the most. It's the reason I never stray too far from his side. It's the reason I stay in the driveway instead of mingling with the neighbors. It's the reason that when I do have to leave him in the care of others to run an errand, I am filled with anxiety until I am back by his side again.

It's the reason that I'm so serious.

It's the reason I oftentimes struggle with carrying on meaningful conversations about everyday things with other people. Not because their everyday issues are inferior to mine, but because my everyday is so different from theirs.

Because every day is game day in our world. Every day requires a level of seriousness and attention and preparation that most people can't truly comprehend, my old self from my old life included.

Because I need to be there for him - and I need to bring my A game when I do.

And because he needs me there. He needs to trust that I will be there to get him through the day.

To laugh with him,

To cry with him,

To live this life with him,

To put his air back on.

Alright, this time out has been long enough. Time to get back to the game.


  1. I am in Russia right now, and few days ago learned about The Pioneers, similar to the Western Scout groups. They have a standard greeting at meetings. Leader shouts...Are you ready, and the Pioneers shout back in unison, ALWAYS READY!!!. This reminded me of you. Always ready, always prepared, no matter what happens, you ready for action, and I understand, this takes a lot of concentration and planning. Maybe you don't smile so much anymore, but who can blame you. You don't see big league football players smiling on the field during an important game.

  2. Love this post. We do have to bring our A game...all the time for however long we have. I was listening to a commercial the other day and they asked "would you like an assistant?" Oh boy would I!! I want the good parts and my assistant can have the crappy ones. (we don't have nurses here in the rural parts of Oklahoma!) Hang in there, some things are scary for all of us that have to depend on vents and pacemakers to breathe. Praying the next year is a great one! Cheri

  3. This is such an inspiration to me. We are just beginning our journey and I am determined to take my husband home. He is also quadropalegic and on a vent. We are getting a surgery Monday to remove the infection that caused this mess and then hopefully back to rehab to get us trained for our new life. Thank you for being out there and sharing your story.

    1. Hello Anonymous. I am so sorry to hear of your husband's injury. The early days are so hard and scary. Thank you for taking the time to read my blog and comment. When I hear from people going through the same thing our family has, it reassures me that sharing our story is important because it provides a connection during a difficult time. I know that's how I felt when I finally found other blogs by quad wives.

      I am happy to answer any questions or provide any insight you might find helpful. If you are on Facebook, I share my blogs and other tidbits of our life on both my personal page and my blog page (New Dawn New Day New Life). That's a great place to connect and learn from one another.

      Hang in there during these difficult days. I'll pass on to you one of my favorite quotes from another quad wife who had lived this life for 40 years when I met her: "This life is hard, but not impossible."