Friday, January 31, 2020

I'm a Caregiver and a Wife and a Mother - Here's What I Want

I wish I could say that the new year has started off with a bang - that we're all feeling good and heading into this new decade with smiles on our faces.

But writing that would be a lie.

This month has been hard. This last week has been incredibly trying. Maybe it has something to do with the heaviness felt, especially here in the US, since the tragic helicopter crash. When things like that happen, life for everyone else is supposed to take on a new perspective. Make us feel grateful for the things we have.

And I am. My god, I am truly and deeply grateful for my husband and my daughter.

But even with tragedy looming large, that doesn't mean my family's difficulties are any less. I wish I could sweep our stresses under the rug. I wish I could take off my husband's spinal cord injury like an old worn out suit, put it in the trash, and watch it be whisked away every Monday morning.

But stresses like that, caregiver stresses in particular for me - cannot be discarded so easily.

I've been so angry lately - my emotions so close to the surface. Quick to cry, quick to let out a defeated sigh - with even the smallest provocation.

Jeff spent a week in the hospital in mid-January, and even though he's home now, he still isn't feeling great. He came home with a wound on his rear end from his hospital stay, and it took us the last two weeks to get it to the point where it's almost healed. That's a lot of extra patience for him (he's only got out of bed twice in the last fourteen days) and a lot of extra diligence for me (daily wound care, propping of legs, checking for pressure relief, etc.).

In addition, I've finally admitted that I'm drowning in the administrative side of Jeff's care. And things like self-care, quality time with our daughter, and sleep have all gotten lost in the goulash of life.

Last night I had a breakdown. As a caregiver, as a wife, as a mother. I cried in front of Jeff and Evie. I told them bluntly that I need more from them.

I absolutely hate turning the spotlight on myself. I am acutely aware that I am not the only person in this family suffering. We are all trudging down our life's path, each saddled with more than we can handle.

But one of my jobs is to keep us all on track. And one of the ways I do that is by asking my husband and my daughter every single day, multiple times a day, "What do you need?"

Last night I stood in front of the two people I love the most and told them I feel like a broken record. I am constantly asking them "What do you want? What do you need?" And If I'm not actively asking the question, I'm anticipating what their answers might be, and I'm acting on it.

Then I told them something else. My voice was shaking and my tears were held back only because I was angry too: "No one ever asks me that question."

I sat there in silence for a moment, then said out loud, but really more to myself, "Honestly, I don't even know how I would answer it."

An hour later we all went to bed. But I spent several hours that night thinking about what my answer to that question might be. What do I need?

I immediately thought of the essay "I Want a Wife" by Judy Brady. I first read this essay in college. And my 19-year-old self naively thought upon reading the title that the author was making a statement about her sexual preference. She wasn't. She was making a statement about feminism, particularly listing all of the things a traditional housewife does to keep things running smoothly. The message goes much deeper, but this isn't the post to expand on that. The reason I thought of the essay is that the thing this woman wants isn't too far off from the things that I want.

So as a caregiver, who also happens to be a spouse and a parent, here are the top five things I want:

- I want to stop time so I can catch up on everything that is half done, that's come undone, that hasn't even been started yet. Time is the nemesis of a caregiver, the one who has to be the arms and legs of not only herself, but of another person as well, so being able to manipulate time would be at the top of my list.

- I want five hours of uninterrupted sleep. Just five. I don't want to be greedy and ask for eight. That would probably be too much anyway. I can't imagine what five straight hours of sleep would do for my physical and mental well being.

- I want a clone - an actual physical copy of myself that could do the things I don't have time for. She could schedule and attend my overdue mammogram appointment. Or earlier this month when I was in the hospital with Jeff, she could have kept the follow-up appointment I had to cancel with a cardiologist to check on the status of the fluid around my heart that was discovered on an ultrasound a few months back. She could deal with the stress of this kind of important self-care appointment, then she could come back home and tell me that everything is okay, all while I spend the afternoon tending to my husband and getting him out of bed.

- I want someone to keep me on track. Someone who knows every medication I take, when I take it, and who gives it to me at the right time. I want someone who asks me if my phone is charged before I leave the house. I want someone to remind me to wash my hair. I want someone to tell me when the toilet is going to break and when I'm going to need to schedule in extra time to fix it. I want someone to tell me I need a nap because I've been extra grumpy and could use a little lie down.

- I want someone who worries about me as much as I worry about my husband and my daughter. I want someone who can't sleep at night because they're not sure they're doing everything they can to make sure I am happy and safe. I want someone who puts me first and themselves last because they know they are strong enough to be the engine that pushes me forward.

As you can see, my list is rather preposterous because none of these things exist in my current life. It might be outlandish, but it's true. Because the things caregivers need often aren't tangible. Yes, I can always use help with things around the house, and errands, and dinners, etc. But what I really, truly need is listed in detail above.

Right now though, I would settle for things to go back to the way they used to be. I'm not even talking pre-injury. Jeff and I have fully accepted that his SCI is here to stay. What we'd really like is for things to just get back to him being paralyzed and stable.

This morning as I was getting ready to take Evie to the bus stop, she came up to me and quietly said, "Is there anything you need right now?" I looked into her eyes and smiled. She was listening, and she was trying. I told her, "The only thing I need right now is a hug."

And it helped.

Here's hoping that 2020 starts looking up.

Monday, December 23, 2019


As the holidays approached, I started thinking about what gift I wanted to get for Jeff. We don't usually make a big deal about gifts, but we always give one another our gifts early. We don't plan it like that; it's just kind of happened that way for the last 18 years.

Since Jeff's injury, I've focused on getting him items that help keep him warm. Quadriplegics are notoriously cold - it has to do with his body not being able to regulate temperature. He's already got every kind of beanie imaginable. And a couple years ago I got a him an epic scarf with a pooping moose on it. I wasn't sure how I was going to top that.

So I thought I'd go a different route this year.

I was searching Etsy one night for something that might be a good fit. Jeff's isn't overly sentimental - not by a long shot. So I try not to get him anything too overtly sappy. I thought maybe I'd search for something that symbolized how he's persevered through the last six years of his SCI journey. I searched for words like "determination" and "persistence" to see what came up.

And something caught my eye.

It was a print of a Finnish word along with the definition. I'd never seen this word before as evidently there isn't a direct translation in English.

Sisu: [see-soo] noun: a special strength and persistent resolve to continue and overcome in the moment of adversity; an almost magical quality ... a combination of stamina, perseverance, courage, and determination held in reserve for hard times.

It was perfect.

It was sold in a set with a necklace that had the word printed on it also. And the necklace came with a card with a further definition of the word:

Sisu is a Finnish word describing a reserve of power which enables extraordinary action to overcome mentally or physically challenging situations.

I bought the set - the print for him and the necklace for me. (I figured throughout the six years we've endured this life, I've exhibited my own sense of sisu at times as well. But this post isn't about my sisu. It's about Jeff's.)

The set arrived in the mail, and I quickly framed the print and wrapped both items up together and placed them under the tree. Evie saw the package right away (the kid has radar on new packages as they materialize under the tree). She asked me what it was, but I only told her it was a special gift for both me and dad, and that she would find out soon.

About a week ago, I was working on Jeff in the bedroom. He was in bed and wasn't feeling great. His stomach issues he thought he had under control were flaring back up. He was uncomfortable. And to escalate the situation, he was just having one of those off days. They happen sometimes. Where the heaviness of this life weighs you down. When you feel like no one understands anything of what you experience every day, every minute, every second. Where sometimes it's all just too much.

I got him settled, and I told him I would be right back. I ran out to the living room and grabbed his present from beneath the tree. Evie saw me and knew what I was doing. She asked if she could come in while he opened it. When I turned around, she could see the emotion on my face.

"Not just yet, Sweetie." I told her. "Daddy and I are going to open it together, then you can come in and see it." She nodded her understanding and gave me a quick hug.

I went back into the bedroom and held up the wrapped package in front of Jeff.

"I thought now would be a good time to give you this," I told him. We both smiled. We've never actually made it to Christmas without giving one another our gifts, and this year was no different.

As I unwrapped the gift, I explained that it was a little different from gifts past. I was trying to ready him for what I knew was going to be a gift that held emotional weight.

I crumpled up the wrapping paper and held up the framed print for him to see. I explained it was a Finnish word that had special meaning. And when I came across it, I immediately thought of him.

Then I read the meaning. Usually I can keep my composure with this kind of stuff, but my voice cracked as I read, and soon the words all melted together through my tears. Because as I read him the definition, I thought of all the times I'd seen Jeff exhibit sisu. All the times he'd pulled up a "special strength," "perseverance," and "courage" as he faced the most massive challenge of his life - one filled with an unimaginable amount of heartbreak, frustration, and loss.

I remember watching him mouth his first words to me after he was stable in the ICU when he asked if he would ever be able to hold our daughter again. And I witnessed his quiet resolve when he would have to come to terms with that answer being no.

I remember seeing his terror and disappointment the first time he saw a power wheelchair after his injury when he told me he didn't want to learn how to drive that thing. And I've watched as he's learned to expertly maneuver a power wheelchair, driving it with his chin. I've seen his confidence emerge when he navigates it in tight spaces, and his happiness return when he cranks it up to the highest speed and coasts down the street.

I've witnessed a transformation in him from not wanting to engage with any type of adaptive product in order to use technology to actively engaging his friends on his phone all while holding a 13-inch stick in his mouth which he uses with precision to peck at the keys.

And I've seen him go from a man who was convinced he would never again be an adequate father to a man who has figured out new and inventive ways to interact with his daughter again.

I know people love a good story about where a person with a disability eventually "overcomes" that disability - whether it's through actual healing and recovery or whether it's by giving that disability the proverbial middle finger and doing something sensational like climbing a mountain. All that is well and good if you've got the means and the physical function to make it happen.

But life isn't always about overcoming. Ours isn't anyway. It's been more about shouldering Jeff's disability and trudging forward with it on our backs while we navigate everyday life. That's at least what we've tried to do. That's most definitely what Jeff has done. It's something he continues to do every minute of every day. And it's a pretty incredible thing to witness.

I set down the print, wiped Jeff's eyes, and buried my face in his neck. I told him that I was proud of him. I told him he's a great father, an incredible husband, and always makes us feel loved. And I told him that as close as I am to his disability, I truly don't know what it's like to live like he does.

That even though I take care of him, ultimately I'm just like everyone else on the outside: I can't comprehend what it's like to not be able to move your body or your limbs. Not be able to feel when other people touch you. Not be able to reach out and hug someone you love. But even though I don't know what all that is like, I'm pretty sure it takes an incredible amount of resolve to face life after a devastating injury like his. I know that some days, some really hard days, Evie and I are the only two things in this world keeping him going. That's what makes us a team. And we're grateful he chooses to push forward with us.

After a few minutes, I opened the bedroom door and Evie came in. I was cleaning up a few things in the bathroom, and Evie went up to Jeff and asked what the present was. He directed her to our dresser where I'd put the print right next to our little cactus family I'd crocheted. He told her I framed a word that reminded me of him. She read it out loud quietly. Then she got out the step stool, set it up next to Jeff's bed, and wrapped her arm around his chest. She always gives extra long hugs when she knows emotions are running high. I was able to snap a photo of this special moment.

After she left the room, I stood by Jeff and wiped his eyes once more. He looked up at me, a mix of emotions on his face. "Do you know what most people don't understand?" he asked. "If I closed my eyes just now when Evie was hugging me, I wouldn't even know she was there. Nobody understands what it's like to not be able to feel your daughter hug you."

The heaviness of the moment lingered, but only for a second. Because then he blinked away his tears, adjusted his head, and said, "But I love it anyway."

And if that isn't an example of sisu, I don't know what is.