The Hypervigilant Caregiver

I've been wanting to write on this topic for some time - a topic that has been wreaking a bit of havoc in my caregiver-heavy life.

Hypervigilance

Vigilance is defined as "the action or state of keeping careful watch for possible danger or difficulties." We all know what it's like to be vigilant. To spend time deeply focused on a task or action with your receptors up, ready to respond in the blink of an eye.

But if you look up hypervigilance in the dictionary, it isn't there. Or rather, it refers you back to the word vigilant. And while it's similar, it's not the same. There's one small yet monumental difference in definition:

The word "constant."

Where vigilance is the temporary state of keeping careful watch, hypervigilance is the constant state.

"Hypervigilance for the caregiver is not just a state of anxiety and alertness, but a constant state of giving over of oneself for the needs of another." -Dina Diana, The High Cost of Hypervigilance

As a solo, full-time caregiver to my ventilator-dependent husband who is a high level quadriplegic, I live with hypervigilance every single moment of my life. And with the onset of my husband's stomach issues that we've dealt with for the last 18 months, my hypervigilance is at an all time ... well, hyper.

This doesn't necessarily mean that I don't get moments to myself. I do. But when my husband needs me, I don't have a choice not to respond. Sometimes it isn't urgent. Things like, "Can you put my glasses on?" can wait for a minute while I finish up what I'm doing. But other things like, "I need suction," just can't. 

At night, I don't sleep for more than an hour or two at a time. If Jeff isn't waking me up for a need, I find that I wake myself up in a state of panic. How long have I slept? Are you okay? What do you need?

Some days I find myself crashing mid-day and Jeff forces me to take a nap. But the same thing happens. 

I just can't seem to ever relax.

According to a Newsweek article, hypervigilance can have a real, negative effect on a caregiver's overall health.

"The hypervigilant caregiver becomes exhausted, but can’t sleep. Chronic stress turns on a steady flow of cortisol. Too much cortisol shuts down the immune-cell response, leaving one less able to ward off infection. Many recent clinical studies show that long-term caregivers are at high risk for sleep deprivation, immune-system deficiency, depression, chronic anxiety, loss of concentration, and premature death."

I already know what people on the outside are thinking ... why doesn't she get some help? And they're right. Because help would indeed alleviate some of the hyperness of this constant state of vigilance.

My god, I wish it was that easy. I wish getting help - getting real, reliable, and readily-available help was as easy as simply asking for it.

The truth is there's two main reasons why we don't reach out for help with Jeff's care.

The first is financial. Anybody we hire to help with caregiving tasks, we are responsible for paying them (or an agency) out of pocket. When Jeff was newly injured, I went back to work full time for a year. During that time, we hired someone from a caregiving agency to stay with Jeff for 8 hours a day while I worked. We paid said agency forty thousand dollars. I don't think I need to explain further why this set up isn't going to work long term. And put very bluntly, no one - with the exception of our parents for an hour or so here and there - is going to come over and be in charge of my husband's life without being paid. Period.

The second is two fold: training and trust. Asking someone to come over and watch my medically complex husband while I take some respite time isn't the same as, say, asking them to come over and water my plants while I'm on vacation. Not only is there an incredible amount of training that has to take place to teach someone how to care for my husband, there's also the trust factor. Jeff and I must both feel comfortable leaving another person in charge of his care. And we also need to know that that person is confident in their ability to handle whatever may surface while I'm gone. I trained for months to learn how to take care of Jeff while he was in rehab, and I was still a jumble of nerves when it came time for me to be in charge. 

This caregiving stuff is complex no matter which way you slice it. Put another way, if caregiving were a medication, hypervigilance would be one of the side effects.

And I'm experiencing that side effect in a major way.

Please know I'm not writing this to gain sympathy. Yes, our life took a major unexpected turn five years ago, and sometimes things really, really suck. And even though we've lost control of the new direction of our life, we still have choices. We've chosen for me to become my husband's full time caregiver, and hypervigilance just happens to come along with that choice.

I'm writing this to hopefully shed some light on this topic. If you've ever been a caregiver in any capacity, I am sure you've experienced hypervigilance. If you're got the double whammy of being a full-time caregiver in a long-term situation like me, I know you have. And if you're not a caregiver, but know someone who is, maybe this will help you empathize when that person seems out of sorts or discombobulated.

Because caregiving is hard.

It's challenged me beyond what I ever thought I would be capable of handling. Sometimes it pushes me right over the edge.

Before my husband's injury, I held a variety of positions. I was a teacher, an editorial manager, and a technical writer. Sometimes when I would bring work home or respond to emails late in the evening, I felt like I was working all the time.

But I was never truly on-call 24/7 back then.

As a caregiver, those are my new hours.

And that demanding schedule is what breeds the ever-present, all-consuming state of hypervigilance.

Transitions

This year Evie entered the 4th grade. When she and I went to Open House at her school, her teacher talked about how 4th grade is a transition year. It's when students really start to think independently - to use the skills they've learned in previous years to begin expanding their knowledge.

The teacher said something that really stuck with me: "Your children are no longer learning to read. Now they're reading to learn."

We're also experiencing transition on another level.

This is the first year since Jeff's injury that I haven't written to Evie's teacher at the beginning of the year explaining that she is the daughter of a quadriplegic - that five years ago, her dad's injury forced a massive change in our family life, and that Evie has done a great job of handling it all.

This is the first year that it's been entirely up to her to decide if and when she wants to tell her teacher or her class about her dad.

Some days she wants to, and other days she doesn't.

And we've had to learn to be okay with whatever she decides.

* * * * *
Two weekends ago, Jeff had to spend a couple days in the hospital.

The following week, Evie was chosen in her class to talk about something that had happened the previous weekend. So she stood up in front of her class and said, "Last Saturday my dad had to go to the hospital."

She said over half the class raised their hands with questions. She was only allowed to call on two students.

The first asked, "Is your dad paralyzed?" At this point, there are quite a few friends at school who know about this fact.

"Yes," Evie answered.

The next question was, "Why did your dad have to go to the hospital?"

Here's what Evie said: "He was having AD - autonomic dysreflexia - which means his blood pressure was really high. My mom was trying to get it to go back down, but nothing was working. So we had to call 911."

Several students simultaneously mumbled, "What's auto...rama...flexa?" But the bell rang, and that was the end of her time.

I looked at my daughter - who was eating her spaghetti while she was telling me this story - and realized that I was witnessing a transition moment.

"You said all of that to your whole class?" I asked.

"Uh huh," she answered casually.

"Great job," I said. Not so much because she shared the information, but because of what she shared.

I can remember when she first learned to say "autonomic dysreflexia" and how proud she was to correctly pronounce a complex phrase. But now she wasn't just saying it. She was saying what it meant. She was showing that she understands that when it happens, it's a big deal.

Because in truth, Jeff's injury IS a big deal in our life. This isn't necessarily true for every person or every family who lives with a spinal cord injury. But it is for us. It's still new enough and challenging enough to warrant the label of a big f-ing deal.

I think in many ways, we're still transitioning as a family. We've got a solid understanding of the injury itself and all the side effects that come with it, but we're still learning to make room for it. We're still figuring out how to deal with this big, crazy, cumbersome thing that's pushed its way into our life and taken up permanent residence with us.

And each day we learn a little more.

Five Years (and a new bed)

Today is the 5th anniversary of Jeff's injury.

Every year I write a blog post on this day - to help mark where we are along this journey. At this point I feel like we're settling in for the long haul. We aren't newbies anymore. We have experienced a lot of "firsts" that have helped build up our resilience. But we aren't seasoned veterans either. This life still has a newness to it - sometimes even a foreign-ness - that quite often makes us feel like we're living on another planet.

But the last year itself has been pretty uneventful as far as living with a spinal cord injury goes.

So a few nights ago, I was lying in bed wondering what I would write about for my yearly anniversary post.

I discovered my subject matter just yesterday.

Every morning after breakfast, I pull Jeff up in his bed. He slips down a bit during the night, so I have this method I use to get him back into position, and it involves using gravity to our advantage. His bed is motorized, so I lay the head of his bed all the way down, and lift the legs up. So he's basically inverted. Then I go behind his bed, grab the end of the sheet that's under him, and pull him - sheet and all - all the way to the top of the bed. Then I lower his feet and raise the head of the bed so he's back to a "sitting up in bed" position.

We do this at least a couple times a day. And it works great.

Only this time, the bed had other plans.

After I pulled him up, I pushed the button that raises the head of his bed.

POP!

It sounded like a firecracker went off in our bedroom. We both flinched and looked at each other.

"What was that?/What the hell?" Our questions overlapped.

Since I couldn't just leave him lying there inverted, I continued to push the button to get his head up.

But nothing was happening.

I could hear the motor whirring, but it sounded different. And it wasn't pushing the head of the bed up. It was just spinning.

"Oh my god - your bed just broke!"

I have to admit, there was panic in my voice.

Luckily the motor that controlled his feet still worked. So I lowered those. At least he was lying flat now.

In my panic I kept pushing the head button over and over, hoping it would start to raise.

Nothing.

"Try pulling on the rails," Jeff suggested.

It worked. At least a little bit. So now his head was slightly elevated. My panic began to subside a bit. I tried pushing the button and pulling on the rails at the same time, and that helped get his head to about a 30 degree angle. But it wouldn't go any higher.

I then inspected where the pop came from. There was a large chunk of plastic lying on the floor beneath the bed, and I could see it was part of the motor housing. Maybe it got hung up on something as I was lifting the head of the bed. I guess the cause didn't matter now. What mattered is that the bed was clearly broken.

An operational head of the bed is an essential function on Jeff's hospital bed. We rely on it to help regulate his blood pressure. When it spikes due to AD, we have to raise up the head as high as it will go to help his blood pressure go down. And when he starts getting dizzy when his blood pressure dumps, we have to lay it down so his blood pressure won't plummet too far.

Now that Jeff was in a relatively comfortable position (lying at a slight angle pretty much staring at the ceiling), I began the unenviable task of obtaining a new bed - STAT.

I called the vendor that supplies all of Jeff's medical equipment. "James" informed me that the bed was out of warranty, which I found out a moment later meant we would need a new prescription for a new bed.

So I got Jeff's nurse practitioner involved. I called her directly. She works so closely with us that she knew immediately when she heard my voice that something wasn't right. I explained everything to her, and she was on it. A couple hours later a new prescription was faxed over to the vendor.

I called to follow up on the receipt of the fax, and once again got "James" on the line. This time he informed me that the order came over as standard, so that meant the bed would probably be shipped out to us on Monday.

It was Thursday.

The Kristen of 5 years ago would have reluctantly accepted this as the only possibility.

Luckily the Kristen of today has learned a thing or two in the last 5 years.

"No," I said. "That's unacceptable. My husband needs a functioning bed, and he needs it today. What do I need to do to make that happen?"

More texts, more phone calls, more faxes, and a lot of waiting later, I finally got a phone call from the vendor asking for a copay for the new bed. This was a good sign. It meant they were processing the order.

A couple hours later and one last follow up from me, and it was confirmed that a new bed would be delivered between 4 and 8 pm that day.

Still waiting on the new bed. One tired and anxiety-ridden couple here.

Now that the admin part of this fiasco was complete, the physical part started. I got Jeff dressed and out of bed and settled into his chair. Then I started breaking down the existing bed. I disconnected his mattress overlay and took apart all the wiring for other equipment I'd meticulously secured. When you have an electric bed, a ventilator with a humidifier, a breathing treatment compressor, and a rotating mattress overlay, there's lots and lots of cords to wrangle.

I disassembled everything and moved the old bed out of the way. I cleaned the floor beneath the old bed and since there's no time like the present, put down the new rug (with the help of my father in law) we'd been storing in the garage for the last month.

A couple hours later, the new bed was delivered. Our bedroom was in shambles for about 90 minutes while the new bed was assembled and the old bed was taken apart and removed. Finally, the room was cleared, and the new bed was in place.

The new bed is going in!

Success! - Oh wait, now I had to put everything back together.

First, Evie and her best friend hopped on the bed to do some intense quality control, making sure the motor was fully functional.

It was!

Our quality control experts

Then it was time to put the mattress overlay in place and re-wrangle all the cords, just in reverse. After some dusting and a final vacuuming, the bed was finally ready. And at 8 pm, I transferred Jeff into his new, fully operational bed.

Putting the mattress overlay back on

Final inspection

Back in bed

Talk about breathing a sigh of relief.

***

So here we are, 5 years into this SCI life, and I'm realizing that time doesn't necessarily make things easier. This broken bed scenario and the subsequent entire day spent remedying it is just one example of how quickly things can derail in this life. One thing breaks and the rest of your day is shot.

I suppose it's similar to what happened on July 27, 2013 at the beach. One minute things are going great. Then something broke. And everything derailed.

Only back then, when we finally got out life back on track, we found we were on a completely different set of rails with miles of unfamiliar territory to explore ahead of us.

At least this time, these rails are familiar.

And today we're working on getting our bearings back in line so we can continue onward.

***
If you'd like to read the other anniversary posts I've written, here are the links:

Year 1 (2014)

Year 2 (2015)

Year 3 (2016)

Year 4 (2017)

The Generator

Last night around 10 pm, we had a major thunder storm roll through our neck of the woods. Lots of thunder, lightning, and heavy rains.

Evie and I watched the skies from our back door. We oohed and aahed at the light show. Then quickly scampered back into the house when the thunder clapped.

Our satellite lost signal due to the storm, so instead we put on old episodes of Star Trek on Netflix. All three of us were comfy and snuggled into bed while the storm raged outside.

Then I got an alert on my phone: "Severe thunderstorms for Clark County." Clearly we didn't need an alert to know this was happening. But it wasn't the alert itself that caught my eye. When I clicked on the link provided, I was taken to a web page that showed something far more ominous than a thunderstorm ... power outages.

Already, 19,000 people had lost power in our surrounding area due to the storm.

I read the news to Jeff.

He looked at me with the serious face we both so often wear these days.

"You need to try to start the generator - just in case."

Because for us, a power outage is more than an inconvenience. My husband lives on life support. And he sleeps on a special rotating air mattress that helps prevent pressure sores on his skin. The battery for his wheelchair ventilator was fully charged, so in the case of an outage, we already had several hours of battery power available to keep him breathing. But we don't have a secondary power source for his bed. So we would need the generator for that.

Luckily, we were still at Yellow Alert at this point. We still had power. But Jeff was right - I needed to make sure the generator would fire up now. Because the alert status could hit Red at any moment.

Here's the thing: I had never started the generator before.

My father-in-law powers it up every once in a while to make sure it's working properly. He even wrote out simple, easy-to-follow instructions for me.

Until tonight, I'd never really looked at them.

Jeff told me to pull the generator away from the wall and make sure I had enough space to yank the cord. He said I didn't need to put the garage door up because if it fired up, I wasn't going to keep it on for long. I listened intently to his instructions. He's so good at talking me through things.

I put my headlamp on, got the instructions, and went to the garage.

I lugged the heavy generator into the middle of the open space in the garage and inspected all the elements. I found the gas lever, the choke, the power switch, and the pull handle.

The first three instructions were easy:

Gas on, check.

Choke on, check.

Engine switch on, check.

Then came the fourth instruction: "Pull starter rope until engine starts."

I knew this one was going to be the big hurdle.

I'm a small woman. With some pretty un-muscular arms. And tiny wrists. And dainty hands.

I didn't have much confidence that this would actually work.

I grabbed the handle and pulled.

The engine made a whirring sound, then stopped.

I pulled again. Same thing.

I pulled yet again. Still same thing.

I felt a twinge in my right shoulder. Like it was saying, "You're killing me, Sachs!"

I thought, maybe I need to pull slowly at first - until the rope had some tension, then pull fast. That was even worse than my first three attempts.

I took a breath and exhaled with force.

Kristen, you need to pull as hard as you can. 

Pull it like the power just went out.

I yanked the cord hard and fast.

The engine whirred again, louder. And this time it didn't sputter out. It thundered to life, then settled into a low rumble.

I slowly turned off the choke, following the final instruction, then I let out a little cry and laugh combined. I could NOT believe it started.

For a few seconds, I just stood there taking it all in. The sound of the engine roared in my ears, the smell of the exhaust invaded my nose. It was loud and smelly, but I didn't care. Because that sound and that smell meant one thing to me: Life.

I let the generator run for another thirty seconds, then I shut it off.

I darted back in the house and shouted, "Did you hear it?"

"No!" Jeff said as I got to the bedroom. "Did it work?"

"I GOT IT STARTED!" My enthusiasm couldn't be hidden.

The surprise on his face mirrored the look on mine. Evie jumped up and down clapping. She was wearing her headlamp too.

The three of us celebrated our little victory as the storm continued to pound down.

In the end, we didn't lose power last night. But if we had, we were ready to spring into action.

There's a lot of planning that goes into living a life with a disability, especially if that life involves life support. Being proactive is just as important as being responsibly reactive. It's a lesson we've learned - sometimes the hard way - over and over ever since Jeff's injury.

Because the storm that hit us last night was just a blip on the radar compared to the one we've weathered every day for the last five years.

Me and my little storm chaser as we prepared for a potential power outage.

On Being Resilient

Yesterday Jeff started running a fever. His spasms were out of control, and he was having random episodes of autonomic dysreflexia.

All sure signs of a UTI.

We called his nurse and told her the symptoms and what we thought it was. She agreed, and we had antibiotics within 2 hours.

Still, Jeff and I are always trying to think a couple steps ahead of his symptoms, and we try to be as proactive as we can. So when he looked at me and said, "You might want to pack," I knew exactly what he meant.

If Jeff's symptoms don't start showing improvement in 24 hours, we'll have to head to the hospital. And any hospital trip requires preparation. I have to take a ton of supplies. I know that sounds weird - taking medical supplies to a hospital. But believe me, it just works out better when I can whip out one of our home supplies rather than asking a nurse or CNA to track something down. I also have to pack for myself because I try not to leave Jeff's side anytime he's at the hospital. So that means clothes, personal necessities, cash on hand, etc.

There's also the ventilator battery, Jeff's medications, the list of Jeff's medications, the printout of the ventilator settings, a copy of our power of attorney, a printout explaining AD ...

The list of what we need to take is long.

So I spent a couple hours yesterday, off and on, gathering up necessities for a "just in case" scenario.

And when Evie got home from school, I told her that Daddy wasn't feeling good and we might have to go to the hospital. She immediately went into his room and I heard her ask quietly, "Hi Daddy. How are you feeling?" Then she went into her bedroom and started packing a few items of her own, in case she has to stay with Nana and Papa for a few days.

We've all been through this before.

* * * * *

Jeff was starting to feel a bit better by the evening, but we were still on high alert. Things can change so quickly with his health when his body is off. And when his health is hanging in the balance, the atmosphere in our home changes. Things become very serious. Even though we try to keep it light, there's a heaviness that we all feel.

So just before Evie got into the bath, I wasn't too surprised when she turned to me with tears in her eyes. I pulled her close and let her tears fall. "I don't want Daddy to have to go to the hospital," she sobbed. "I'm scared."

In the past, she'd always had more anxiety about being away from us, but now that she's older, this was the first time she expressed concern for Jeff first and foremost.

She got into the bath with red eyes, and began washing away her sadness. By the time she was finished, she emerged with a smile.

I was sitting on my bed, which is next to Jeff's bed, and I thought Evie was going to come over and sit and cuddle with me. Instead, she walked over to Jeff's side and said to him in a gentle voice, "Daddy, can I take your blood pressure?"

"Sure," Jeff said back to her.

So she pushed the button and watched the numbers on the machine count up. When it hissed, she read out the numbers, "110 ... over ... 75." She looked at me for confirmation that she'd read it out correctly. I nodded and smiled at her.

"Is that good?" she asked.

"Yep, that's perfect for me," said Jeff reassuringly.

* * * * *
Later that evening, just before bed, she took his blood pressure again. And this time she held his hand while she did it. Earlier in the day I was doing the same thing. I knew Jeff had no idea she was doing it. He can't feel it, and he couldn't see it because it was out of his vision line. Jeff's fingers no longer bend - they are stiff from years of lying flat. But his skin is soft and warm to the touch.

Evie's fingers looked so little wrapped around his thick hand.

I walked to the other side of Jeff's bed, and the three of us smiled quietly at one another - our smiles were a mix of concern and love. Evie leaned over and gave Jeff a hug. She put one arm on his stomach, and put her other hand on his shoulder. I leaned in for a hug as well. With my arm on Evie's arm, I buried my face in Jeff's neck.

And we held tight to one another for a nice, long family hug.

"This is my favorite," Jeff said softly. "My girls."

* * * * *

This morning, Jeff's fever is gone, and it looks like the medication is working. So we're keeping our fingers crossed that we can avoid a hospital visit.

After Evie went to school, I told Jeff how she had cried last night before getting in the bath. But that she didn't want him to see. And how I observed a resiliency in her when she came out of the bathroom and went right into nurse mode.

He looked at me and said, "She learned it from you."

I smiled and took in the compliment. And I guess he's right. I realized that that resiliency - that falling apart followed by calmness when it comes to dealing with difficult, scary issues - is one of the things I'd like to pass along to Evie.

Granted, she can scrape a knee and convince us all that the world is coming to an end. But when it comes to caring for her dad, she's calculated ... measured ... confident.

What a treasure this girl is to us.

Life Support

Sometimes I forget that my husband is on life support.

I mean, I never actually forget that he's on a ventilator - how could I? Afterall, much of Jeff's care revolves around the ventilator and its accessories: Daily trach care, monthly trach changes, daily charging of the vent battery, weekly tube changes, monthly supply ordering, etc.

I don't know ... I guess all of that has just somehow become part of our routine.

I think I'm talking more about the term "Life Support" and the picture that phrase creates in my mind. Even though we live with life support each and every minute of the day, my brain somehow reserves that term for someone who is lying unconscious in a hospital bed with a tube in their mouth going into their lungs breathing for them. And indeed, that's the scenario we were faced with just after Jeff's injury.

But make no mistake, my husband is still on life support - though it's strange to think of it that way since I interact with my husband on what I now consider a "normal" basis every day.

And the vent is just part of our normal.

And when it functions like it should, the whole life support thing works out fine.

It's when it fails that things take a scary turn.

Here's a brief explanation of Jeff's vent setup so the next part of my post makes sense.

When Jeff is in his wheelchair, he uses a ventilator that is mounted on the back of his chair. In order for him to be mobile, he has a battery also mounted on the back of the chair that powers the vent. And we can usually get about 10 hours of running time on a fully-charged battery.

I charge the battery each night.

So it was somewhat startling when just after dinner a few nights ago, his ventilator started alarming. We've learned not to freak out at the first sound of an alarm. Sometimes it beeps a few times when Jeff is talking too much just to let us know his breath frequency is outside the alarm parameters. Then the beeping stops. No big deal.

But the beeping didn't stop. So I checked the readout on the vent, and it said, "POWER LOW."

"Oh no. The external battery must be dead - or dying," I told Jeff.

"Ok," he said. "We'll wait a few minutes then get back to bed." Jeff's bed ventilator is plugged into the wall, so we don't have to worry about all this when he's in bed (unless of course the power goes out - you can read about the time that happened in this post!)

The POWER LOW warning usually means that the ventilator is no longer pulling its power from an external source and is now running off internal power, which usually lasts about 45 minutes.

Plenty of time. We were home, so again - no big deal.

Yet the beeping continued just one minute after I silenced the last alarm.

I checked the readout again.

"POWER LOST"

And this time I could hear the motor of the vent struggling. It was whirring, lumbering along like it was nearing the finish line of a marathon. It was clear that this machine wasn't going to last 45 minutes. This time the Battery Level indicator was red as in "Red Alert" - you've only got a few minutes left.

"I have to get you back now," I told Jeff. My voice was calm but with an urgent undertone.

He sped back to the bedroom, and I quickly gathered the sling for the transfer. I was working rapidly amidst the blaring alarm and the laboring vent.

As I hoisted Jeff up into the sling, he looked at me with that look where we feel like we're the only two people in the world and said, "Nothing like your life support failing to ruin your night."

And that's when it hit me.

It's not so much the life support that's stressful in our life - it's the life support failing that's terrifying.

I got Jeff back to bed quickly and onto his other vent. And the next morning I put a call into the vendor who manages his vent, and we're now awaiting a new battery to be delivered this Sunday.

So that means for now we have a battery only capable of delivering 4 hours of juice to his chair vent until we get and charge a new one. Yes, I could always plug in his chair vent to a wall outlet, but being tethered to the wall would kind of defeat the whole purpose of being in the wheelchair, right?

I'm thankful this incident happened at home and not while we were out at a doctor's office. Or the store. Or in the car. I always, always have an external power cable with us when we go out for those "just in case" scenarios. But even then with a fully charged vent, we only have 45 minutes at most to get him to another outlet.

This is why we never venture too far from home. This is why we don't fly on an airplane. (I can barely contain my nerves when this happens on the ground; I don't think I could handle thirty thousand feet.) This is why when we DO get in the car and go somewhere I have a checklist a mile long and our van is filled with a barrage of equipment and supplies.

Can you imagine being faced with a time limit on your ability to breathe?

I can't.

But my husband can. And it's my job to make sure we beat that clock before time runs out.

Every time.

My Grumpy Valentine

A Valentine's Day Poem

He's highly unromantic.

He despises greeting cards of any kind.

He's like Charlie Brown - the commercialization gets to him. 

He's my Grumpy Valentine.

Every day he tells me he loves me.

He makes me laugh all the time.

He thanks me for taking good care of him.

He's my Grumpy Valentine.

He pushes through the bad days.

And on good days, he shines.

This injury has been so hard on him.

He's my Grumpy Valentine.

He's forward and pragmatic.

The drama he leaves behind.

He makes even this life worth living.

He's my Grumpy Valentine.

He's the keeper of my heart.

My true partner in crime.

He is my all, my everything.
He's my Grumpy Valentine.

The Notebook

When Jeff was in the hospital following his injury, I kept meticulous notes.

In seven months, I filled up three notebooks with questions, concerns, and information I would need to absorb to move us forward in our new life.

I've since filled up more notebooks, but not at the same pace as those first three.

And I've kept them all.

I recently revisited my first notebook because I'm working on a project with AbleThrive to help people going though the first stages of a spinal cord injury. I thought my notes might be helpful as a reminder of what I didn't know but needed to know back when all of this was new.

As I leafed through that gray, spiral bound notebook, I was overwhelmed by the sheer volume of information contained inside. And now, almost 5 years out, I can look at that time from a bit of an outsider's perspective. And for the first time, I can understand the question people often ask: "How did you do it?" Because that was the first question I asked when I looked over those notes.

My god, how did I do this?

Imagine the following scenario: you have three boxes of puzzles in front of you. Your job is to put those three puzzles together. But instead of working them one by one, the contents of all three are dumped into one big pile in front of you, with all of the puzzle pieces mingling together. The boxes are then discarded, so you have no reference of the actual pictures you're putting together - just a vague idea.

Ready, go.

That's what the first year of Jeff's injury felt like.

And that's also what my notebook looked like.

For it wasn't just filled with questions about Jeff's condition, or medications and equipment he would need for the rest of his life. It also contained to-do list after to-do list of things I needed to address in order to keep our life moving forward.

Things like:
- contacting my work and setting up a leave of absence
- steps for an address change (that list alone is long, and we moved twice before Jeff even came home from rehab)
- drawing up legal documents like a power of attorney so I could sign on behalf of Jeff
- setting up a meeting with Jeff's former employer to talk to his bosses and clean out his desk
- making sense of government programs available and filling out applications for disability services
- contacting my insurance agency for information on how to add my now disabled husband to my coverage after his Qualifying Event
- ways on getting rid of Jeff's car he would no longer drive, and how we were going to do this when only his name was on the lease and he couldn't sign paperwork
- setting up meetings with doctors who needed to complete paperwork in order to put things like long term disability into place

The list goes on and on.

Then of course there WERE the medical questions and notes:
- what kind of wheelchair would Jeff come home with?
- what supplies and equipment do we need and when can we expect them to arrive at our house?
- what do all the numbers on the ventilator mean?
- what kind of vehicle would we need?
- and endless notes on things like skin maintenance, autonomic dysreflexia, bathing equipment, proper mattresses, etc.

There's even an entry - perhaps an early glimpse of the blog I would eventually start - about my concerns at my ability to get all of this done:
- I really will do everything I can to keep my husband comfortable and positive, make sure he is making the best progress he can, and ensure that our family stays intact. How I am going to achieve all of this, I have no idea.

So the question - how did I do this - is a valid one.

And having lived it, I suppose I have the answer, though it may not be as specific as one would like:

I just did.

Every day, I did. I chipped away at each list every day. Some days I was able to cross off whole items. And sometimes items would need to be transferred to a new to-do list. And when I would hit a wall, I would find a new way to get over it.

I just did.

And I guess in many ways, I still do. But nothing compares to that first year. No other year we've lived with Jeff's injury has been like that first one. So many questions. So much chaos.

So many puzzle pieces.

And that's why this project I'll soon start with helping newly injured individuals and their families navigate the beginnings of life with a spinal cord injury is so important to me.

Because I've done it.

We've done it.

We meticulously put the pieces into place. And now our puzzles look more like pictures than piles.

They're not finished by any means. And they're far from museum-quality works of art. Some pieces are held together by frustration, trial and error, and true grit. Others, while not necessarily the best fit, are wedged into place, and work just fine.

Getting through that first year is something I never want to experience again. Yet it was that very experience that helped shaped the way we handle obstacles today - helped us realize that while our life may have been shattered, it was possible to put the pieces back together again.

One by one.

Little by little.