Sometimes I can’t believe my husband is paralyzed.

Most of the time I can. I’ve gotten fairly used to this life in the relatively short amount of time we’ve lived it. How we have to expect the unexpected. How we can’t just hop in the car on a whim anymore.

Our old life seems like a fuzzy dream at this point.

I think it’s fair to say that we are handling things well. We’ve managed to emerge from the ashes of a former life and begin our journey on this new one. And I think most people we encounter who are interested in our story see us and are encouraged that we’re doing so well.

And we are.

But underneath the smiles, the perseverance, and the positive attitudes is a layer of pure exhaustion interspersed with anxiety.

I’ve been struggling to find the right word to describe this new SCI-way-of-life, and the best one I can come up with is

Relentless.

It’s a life in which we can never let down our guards. We have to pay extra close attention. Always.

Just yesterday, as I was tending to Jeff, I was pulling down his shirt and noticed faint red marks on his stomach. I checked under his collar, and sure enough the rash was creeping up his neck. A sign of rising blood pressure. After sleuthing about, we discovered his catheter was partially clogged. And probably had been for several hours. Slowly, persistently raising his blood pressure.

We caught it in time to avoid a serious complication.

And just like that, our morning routine was derailed with an unexpected issue.

We don’t ever get a break.

We can’t ever take a vacation from this injury.

SCI has taken up residence in our home – our lives – and it’s here to stay.

Because tomorrow, when we wake up, my husband will still be paralyzed. Tomorrow, the next day, and every day for the rest of his life.

That’s some seriously heavy stuff to deal with. Difficult to comprehend. Almost impossible, really.

Because every once in a while – just for a fraction of a second – I forget that he’s paralyzed.

“Forget” probably isn’t the right word. It’s almost like I experience a time shift – a glitch in the matrix.

The last time this happened, it was early evening and Jeff wasn’t feeling well. He was in bed, cold, and feeling lethargic, probably beginning the battle with yet another UTI. I tucked the blanket around him, up under his chin, and adjusted the fuzzy Charger beanie on his head. He smiled a little smile that told me he was relatively comfortable and just wanted to rest.

I checked on him a little later. He was in and out of dozing, and when he saw me, he gave me, again, a tired little smile. For a split second I thought to myself Poor guy. He’s had a long day at work and just wants to rest.

BAM – reality hit me in the face.

Wait – he doesn’t work anymore. He might not ever work again. He’s paralyzed from the neck down. He can’t move his body. He’s on a ventilator. Oh my god.

It took less than a second for my brain to process all this. I smiled back at Jeff and touched his cheek. I didn’t say anything. I just turned around and went back to what I was doing. But my heart was a little heavier. And my stomach was recovering from the flip it’d just done.

I wonder if this will always happen – these fleeting moments of thinking you’re living the life you used to live only to be jolted back to reality a moment later.

I imagine it always will.

Because I will always have to feed my husband. Always have to brush his teeth. Scratch his itches, clip his fingernails, and wipe the sleep out of his crusty eyes.

He will always have to view the road from the back seat as I drive us where we need to go.

I list these things not only to vent them off my chest, but to share the heartbreaking reality that my husband can no longer do these things for himself.

Simple things that other people do so easily every day. Things we never think twice about – that we take for absolute granted. Not that we aren’t thankful that we can do them but because there’s too many of these things we do in one day, that counting them all would be next to impossible.

I hate that our independence has been stripped away by this injury. That we have to rely on others for so much in our lives. Jeff especially. Before the injury, we were a very independent family. And we mostly kept to ourselves. Not that we didn’t have friends or see family. But we liked being just us three – and doing things around the house together.

Now our house is filled with “other” people. People we’re grateful for, no doubt. But still … another reminder of a life long gone.

* * *

And so this relentless life lives up to its name. It just keeps coming.

Like the ocean.

The goddam ocean that I can no longer look at with any kind of peace because it was there that our life was swallowed up by the waves, slammed into the sand, and spit up onto the shore.

What can we do? How can we get through this?

We can be just as relentless in our efforts to live. To push forward. To keep going.

God, it’s hard.

So very hard.

But not impossible.

Written by Kristen Sachs
Kristen Sachs is a wife and mom living in Southern California. In July 2013, she became the primary spouse caregiver to her husband, Jeff, when he suffered a spinal cord injury in a diving accident. Jeff is now a ventilator-dependant quadriplegic, and together with their young daughter, they are learning to live a new life. Kristen’s blog, A New Dawn for Us, chronicles their struggles and triumphs on this journey of caregiving. It may not be the life they imagined, but they are doing our best to make it a life worth living.

Related Articles

Popular categories

Finances
Burnout
After Caregiving
Housing
Relationships
Finding Meaning
Planning
Dying
Finding Support
Work
Grief

Don't see what you're looking for? Search the library

Share your thoughts

11 Comments

  1. The hardest thing is watching someone you know in such a different light. They are still there but trapped inside. It’s heartbreaking not to be able to “save” them. Just keep loving them. Everyone can feel love. ❤️

    Reply
  2. I am living the same way after putting my Mother in a Nursing Home. Yet, I really am living in a fog. I go through my day to day functions. I smile when I see people. Inside of me I an screaming.

    Reply
  3. The harsh reality of ALS.

    Reply
  4. Kristen,
    I can certainly relate. My wife is paralyzed from T6 right behind her heart downward. She has been extremely active when younger and now infections and internal organ and spine deterioration are taking the toll on our life. If that were not enough she has had four accidents in the last three and half years that are all severe head injuries. Two while rolling on sidewalks that had no guard rails and she went off the side and banged her head down hard and two by car accident. I do crusade against drunk driving now a lot. A drunk driver rear ended our Chrysler Town and Country van specially equipped for wheelchair access at 48 mph while waiting for a red light to turn green. Destroyed the van and aggravated already big problems and caused new ones that are even more troublesome. Common to TBI’s (Traumatic Brain Injuries) is the symptoms of memory loss, the dementia like behavior, the mood changes that can be dramatic and sudden and the many new issues with memory and cognitive thinking difficulties she deals with. Then she gets frustrated because she can’t function like she used to and it gets to be relentless magnified as she begins to rage at anyone close enough to hear. We have a young friend, Shane who was wounded by a bullet and came home totally paralyzed like your husband. The bullet entered his neck traveled upward inside his skull and took out his motor control area in his brain. His family has been dealing with the issues you describe and more for about 12 years now. I know a lot of what you are going through. I know the frustration and the feelings you described all too well. What really frightens my wife is the fact that I fell through an open manhole last summer and Doctors are talking back surgery. She is afraid I will be in a wheelchair also. It doesn’t matter that my surgery is not a major spinal injury but a disc rupture, all that she can think of is that her surgeries failed due to severity of her injuries when she was 17 and no amount of reassurance can calm her fears. I think about the one thing that trumps all else. We are married. She is not my career, she is my wife. People tell me they couldn’t do what I am doing. That is not the real truth. Because people find themselves doing the extra effort because of love and later like us, they look back and know because of love they could do no less. Hang in there. You are right. It is relentless. I will be praying for you. Know this, you are teaching your daughter by example what real love and commitment is. She will grow up a better and more able person for seeing the reality of what you live with your husband. I didn’t realize how we impact others until I would meet people and in conversations I would be told that they were watching and seeing real love and devotion. Sometimes that is our only reward. It sometimes has to be enough.
    David

    Reply
  5. dear kristen, i could have written your article. my wife’s accident was july 27, 2013. C1 C2 fracture. incomplete injury. you like me are now a UPN(unlicensed practical nurse). i will try to remember to pray for you. i also understand your statement about never being alone. i don’t even lock the front door anymore because of rotating caregivers. God Bless

    Reply
  6. My hubby has a non-malignant tumour in the lumbar region. Slowly it is taking his mobility, it causes him endless pain, his bladder no longer works and he self-catheterises, he has had bowel surgery and will eventually reach the point they will stop working completely. There is extensive nerve damage, toes nails have all fallen off, the list seems endless. He can spend several days a week in bed due to pain and fatigue. We can never make plans too far ahead because you never know how he will be. His situation can change in the blink of an eye. I love him dearly, I couldn’t imagine my life without him. We have known each other since childhood but only became a couple 4 years ago, we found out about the tumour about 2 months into our relationship. I married him knowing the impact this thing would have on our lives but it doesn’t stop me from sometimes wishing we could have the life that should have been.

    Reply
  7. My husband has been paralyzed for 8 years and I am his sole caregiver. He is a T’5 so he has the use of his arms. I can relate to many parts of your story especially the part where we never know whatcthe next issue is. C-diff took over 2 years ago (probably due to the antibiotics from so many UTI’s) and we now are dealing with a Stage 4 dicubidous wound. I am now dealing with the guilt of him being in a nursing home because he needs 24 hr care. Most of his family live out of state and feel that a phone call is enough (well it’s not) and any friends he had have disappeared. This life isn’t for sissy! That’s for sure. I love my husband and miss our old life so much!

    Reply
  8. I just wanted to send you a virtual hug, because GOD, I feel your pain and I know what it’s like. Our circumstances are a little different as far as our husbands’ medical issues, but so much alike in how it affects us and our lives. I wish I had words of wisdom for you, but all I can really say is hang in there and know you aren’t alone. This can be a lonely and hopeless journey, but maybe somehow there is some purpose. Thank you for sharing your story and your feelings. It helps the rest of us going through similar situations.

    Reply
  9. thank you for sharing your story , I too am the caregiver for my husband, our lives have been changed by a brain infection and massive stroke , for 3.5 years now . Your words are so very familiar and sad . My husband can only speak 3 words , so I have to try to read his mind , I can’t imagine the frustration on his part , and I know it on mine ….relentless is a very appropriate word for this type of life , I’m so sorry for you and your family , but you will be a different person because of it , an unwelcome but rewarding in some ways , that we can actually make the best of these very hard situations …hang in there my sister , you sound like a very brave woman !!

    Reply

Share your thoughts and experiences

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Join our communities

Whenever you want to talk, there’s always someone up in one of our Facebook communities.

These private Facebook groups are a space for support and encouragement — or getting it off your chest.

Join our newsletter

Thoughts on care work from Cori, our director, that hit your inbox each Monday morning (more-or-less).

There are no grand solutions, but there are countless little ways to make our lives better.

Share your insights

Caregivers have wisdom and experience to share. Researchers, product developers, and members of the media are eager to understand the nature of care work and make a difference.

We have a group specifically to connect you so we can bring about change.

%d bloggers like this: