Sunday, March 22, 2015

I Like My Husband

Jeff has been through so much in the last two years.

Our whole family has, too. But Jeff especially.

In the blink of an eye, he went from a completely independent, physically strong individual to someone who is now entirely dependent on others, who can't even breathe on his own for more than a few hours (sometimes only a few minutes).

In the extremes of life, his pendulum has swung far and wide.

I've written before about the love Jeff and I share. How our relationship has deepened since his injury. But I've been thinking about something different lately. Something that, when said, might not sound as strong as a feeling of love toward someone, but is just as important in making a relationship stand the test of time.

I've been thinking about how much I like my husband.

We have been so fortunate along this journey that Jeff has remained the man he was before his accident. Lucky that he didn't suffer a traumatic brain injury when he hit his head on the ocean floor. Lucky that our friend Chris rolled Jeff over in the water so his brain could receive much needed oxygen even though his breathing was labored. And lucky that during those first few critical, immensely difficult months following his injury, that my husband didn't completely disappear into a bottomless depression leaving me with a shell of the man I married.

There's no doubt that this injury has changed him - more than just physically. He's not exactly the same person he was before. He's not as loud. He's not as boisterous. He's kind of a subdued version of himself when it comes to the physical aspects. But at the core of who he is, he's the same guy I married nearly ten years ago.

Lately I've been reminded just how much I like being around him. It's almost like we've gotten back to the reason we kept wanting to hang out with one another after we met.

Jeff loves to make me laugh. And he does it better than anyone I know. His goofy sense of humor just resonates with me. Our life is filled with inside jokes, and funny made-up words that have meaning only to us.

The other day I came across Jeff's old mullet wig that he used to wear at Halloween (or sometimes he would just put it on around the house to get a reaction out of me. It always worked). This wig is like part of our family now. We've all worn it at some point - gross, I know! Evie loathes it. She says it smells like a dog. Jeff was so excited when I showed it to him. He immediately had me put it on his head. He was outside in front of the house, and he kept it on his head for a good 30 minutes. He hung out in the driveway and donned his nappy locks - drove up and down the sidewalk with it on - anything to make passersby do a double take.

He said he liked how snug it was on his head and that the "party in the back" covered and warmed his neck nicely. He even wore it for a bit when we got back into the house.

Here's another example of his humor. Jeff and I love the show The Walking Dead. I found a shirt online which I had a feeling he would like. When I showed it to him, he wanted me to order it right then.

Here he is wearing his new shirt:

It's kind of hard to see the words with all the tubes and seatbelts and whatnot covering it, but the shirt reads, "All My Friends Are Walkers."

Obviously the shirt has a double meaning for Jeff.

It's stuff like this which is why I like him so much.

It's also why I love him.

But it's mostly why I like him.


That said, it not just Jeff's sense of humor that makes him such a likeable guy.

Here what I mean:

The day Jeff left Rancho los Amigos to come home - after spending nearly seven months in the hospital following his injury - he had lots of visitors from the hospital staff. One of those visitors was a respiratory therapist named Irvin who had seen Jeff almost every week of his hospital stay. As they were saying goodbye to one another, Irvin gave Jeff one of the best compliments I've ever heard anyone say about my husband. Irvin stood by Jeff's bed and said, "The thing I've always respected about you is that you never once played the victim the whole time you were here. There's a lot of people here who complain about what happened to them. People who want you to feel sorry for them and tell you how miserable they are. People who think the world owes them something because of their injury. You never did that. And I respect you for that."

I couldn't agree more with Irvin.

Jeff makes taking care of him easy. The tasks themselves can be demanding and overwhelming and oftentimes seemingly neverending. But the person is kind. And funny. And patient. And respectful.

Jeff has handled his paralysis much better than I ever thought possible. I admit that when he was first in the hospital and I let my mind wander down that path to a murky, unknown future, I thought I was going to have to dig deep to find my husband. But to my surprise, he emerged himself. His character pushed itself through, and every single day I am grateful for his resiliency.

Just another reason to like this husband of mine.

Sunday, March 1, 2015

A Visit to the ER

We've had a lot going on lately. 

We're facing a lot of things that have arisen unexpectedly.

This week we spent some time in the ER, had several doctor visits, have been to numerous pharmacies on the hunt for some much needed medication, and I've had to take some time off work.
Things have been stressful and exhausting.

But such is the life of a quadriplegic and his wife.

When we showed up in the ER earlier in the week, I had my game face on. I knew that the staff wasn't going to be prepared for us - that we would have to politely educate them on the unique problems of a paralyzed guy. We've been through this a couple times now, and it's a pretty delicate dance. You have to be firm enough to make it clear that you know what you're talking about. But not so arrogant as to insult the professionals.

The thing is, when we went to the ER, we knew what the problem was. We needed the doctor to partner with us and provide us an effective course of treatment. Most people who go to the ER have no idea what is wrong with them, and they rely on the doctors and nurses to 1) figure it out, then 2) fix it.

When we told the ER doctor Jeff's problem (which I'm not going to detail here - I have to allow my husband some sort of privacy), the doctor literally laughed. Then he choked out the words, "What do you want me to do about it?"

What I wanted was to punch him in the groin, but that's another story.

We told the doctor about the extreme bouts of autonomic dysreflexia (AD) Jeff was having. How we know of other paralyzed individuals who have had the same problem and ended up having seizures from the sudden and dangerous increase in blood pressure. How we are hoping that medication will help us instead of a surgical route.

The doctor left the room briefly then came back and suddenly showed more interest in our case. Like he actually believed us rather than thinking we were some patients fresh off crazy street. While he was out of the room, he probably googled autonomic dysreflexia to refresh his memory on a condition he had only encountered in the text of a medical book during his long-ago days of medical school (I'm not being a smart ass here - most doctors are not familiar with AD if they don't regularly work with people with spinal cord injuries).

So he was willing to work with us to come up with a medical regimen to help control the symptoms Jeff is having. He needed to examine Jeff, which meant we needed the help of four staff members to transfer Jeff from his chair to the ER bed. (This is precisely why we went straight to the ER rather than urgent care or a specialist's office. It is IMPOSSIBLE to get Jeff safely onto one of those tiny exam tables in a regular doctor's office.) Before the transfer, I went to the car and got our second ventilator so I could put Jeff onto that one once he was on the bed. ERs don't have respiratory therapists just hanging around to assist with ventilator management, so I got to play that role too.

Honestly, at this point I don't mind having to play all these roles. Because I'm confident that I can handle my husband's care. I do, however, know that I can't do it all alone, and I need help in situations like this. I no longer have any problem telling medical professionals the necessary steps to safely transfer Jeff. Because if we aren't in a facility where people work with SCIs on a regular basis, they need a SCI wife to call the shots in some circumstances. And I need them to make sure it's all done safely.

Looking back to when Jeff was first injured, I remember being so scared at first, wondering how in the world I would ever remember everything it took to safely get Jeff from the bed to the chair. From one room to another, even. I remember feeling like I was living in a dream when I first had to write the word quadriplegic on a form I was filling out regarding Jeff's condition. I remember the first time I had to answer the question "Are you disabled?" on another form I was filling out for Jeff, and I automatically checked the No box. I had to ask for another form and start over. I remember the first few times people would ask me if Jeff would ever "get better" from his injury. If he would ever regain any sensation and movement in his body. I would say something like, "Well we certainly hope he will." Now I answer the question honestly. I shake my head, and quietly say, "No. Probably not." Then I smile slightly and nod my head to indicate, yes that sucks, but we've decided to keep living our life despite this crazy turn of events.

It's truly amazing to see how we've progressed from a couple years ago.


We were out of the ER within a few hours, happy we didn't have to stay overnight or be admitted to the hospital.

But we're still dealing with some scary side effects of a spinal cord injury. We're going down a path right now where the timeline isn't quite clear.

And sometimes not being able to see the horizon is a frightening and stressful ordeal.

But we'll make it. We will.

We somehow always do.

Me and my Loves - a couple days before the ER visit.