Wednesday, August 26, 2015

The Terrible, Horrible, No Good, Very Bad Day

It started out perfectly fine. Evie was excited about her second day of school. Jeff slept well and felt good in the morning. Nana and Evie got off to school just fine, and Jeff and I ate breakfast together. It was all just lovely.

Things went downhill from there.

I found myself with some extra time yesterday (huh? what's that?). So I decided to look for some part time job opportunities online. When we moved to a new state four months ago, I had to quit my full time job as a technical writer to focus on getting our family established in our new city and taking full-time care of Jeff. And now that summer is over and Evie is back in school, I am finding that I just may have the time for a part-time, flexible, work-from-home job. So I began looking.

I found an editing job that looked like just the ticket. I had all of the qualifications and necessary experience. I clicked my way through the application, then landed upon a test. It was about 20 questions, and I had 40 minutes to take it. So I started.

The questions were grammar based, and while many were tricky, I felt I did fairly well.

I submitted my test and the screen told me I would receive my results immediately in an email.

I hurriedly clicked on the email and was met with the jarring first word:

"Unfortunately ..."

I didn't pass.

I couldn't believe it.

The letter didn't say if I was even close to the mark. So I have no idea if I was just one wrong answer away from moving to the next stage or if I'd bombed the whole test! All I know is the very nicely-worded rejection letter sounded like this in my head, "Sorry, but your skills suck, and we can't possibly work with a loser like you."

I felt horrible.

Words are my thing. Grammar is my strong point. How could this happen?

I went into the bedroom with hunched shoulders and told Jeff of my failure. I told him I feel like caregiving and managing our house and keeping our family's life running smoothly are consuming so much of who I am that I am no longer good at what I used to do for a living.

He told me maybe I need to spend some more time studying before I apply for other jobs. Great, now I have to spend what little time I DO have to myself studying something I should already know! But really, he's right - even if I didn't admit that to his face.

It was a very deflating moment for me.

I used to love working. I was good at my job. I made decent money. I provided financially for my family.

Now I work harder that I ever have in my life, but I don't receive any of those benefits. And though I have developed new skills over the last two years, they aren't skills I can put on my resume. The work I do now is completely different than the work I used to do. I simply can't bullet point that I dress and feed my paralyzed husband each day with efficiency. That I maintain a complex inventory of medical supplies and communicate monthly with the vendor ensuring supplies are accurate and stock isn't running low. Or that my troubleshooting and quick thinking skills have increased tenfold - like the time when changing my husband's trach, a flap of skin prevented me from putting the new one correctly into place. With my heartbeat rising steadily and my husband looking at me wide eyed, his breath labored because the thing that keeps him alive wouldn't go into his throat, I calmly told him, "You're fine. I need to get a new trach because this one isn't going in. You can breathe for a minute just fine." I flew into the closet and grabbed an extra trach. By this time there was blood on my hands from trying to force the first trach in with the flap of skin bleeding all over the place. With the second trach still meeting resistance, I finally reached my finger into the hole in his throat, held the flap firmly in place against the side of the hole, and with my other hand, guided the new trach into its proper place and gave him air again.

How exactly do I put that on a resume? Successfully performed a life-saving procedure on a quadriplegic under strenuous circumstances all while maintaining a professional composure.

Yeah, I don't think so.

I feel like I'm disappearing in all this. Like the person I used to be is fading away. Like that picture of Marty McFly in Back to the Future. If I don't do something quick, I'll be gone for good. (Where DID I park that DeLorean?)

Or maybe I'm just morphing into someone new. I think that's probably what's really going on. Still, I really was not happy with my dwindling academic skills.

BUT ... I didn't have time to throw a proper pity party. Instead, it was time to get Jeff out of bed and into his chair so we could continue this terrible, horrible, no good, very bad day.

Yesterday afternoon we had an appointment with a pulmonologist. We were really looking forward to this. It was a first meeting - a "getting to know you" appointment. Jeff needs a pulmonologist (for obvious, ventilator-related reasons), and the truth is, he's never actually had one - besides the ones in the hospital. We had a bad experience with one back in California where during our first meeting the doctor was so shocked to see someone on a ventilator outside of a clinical setting that he immediately wanted to put Jeff back into the hospital. Jeff was not sick at the time, so we were equally shocked by this doctor's vehement suggestion. The pulmonologist went so far to tell us that if he had been Jeff's doctor at the rehab hospital, he would have never released Jeff to go home. He said the home is very unsafe for someone on a ventilator. That's when Caregiver Kristen wanted to leap at the doctor and put HIM on a ventilator - but instead we left and never went back.

So needless to say, we were very much looking forward to teaming up with a new pulmonologist. In fact, I worked with several people to find a good fit for Jeff. We need a doctor who is going to work with Jeff long term. And evidently this one was essentially hand picked for Jeff. Or at least that was the indication we got.

Jeff and I talked about the topics we wanted to discuss with the doctor like managing ventilator settings and options for the future - perhaps a discussion on weaning procedures or testing his phrenic nerve to see if he might be a candidate for a diaphragm pacemaker. Pretty big stuff.

At 1pm I started getting Jeff dressed and ready for the appointment (which wasn't till 4). We left the house in plenty of time, and we arrived 30 minutes early. We stayed in the car until 3:40, then headed in.

Jeff trying to hide from me in the bushes, 
just before the doctor appointment that concluded our 
terrible, horrible, no good, very bad day.

At 4 pm, our appointment time, the front office gal called us up to fill out paperwork. I completed it quickly, having come prepared with a list of all Jeff's medications and all surgical history.

A nurse called us in, and at 4:15 we were in the exam room. The nurse was pleasant - made chit chat about the weather and took Jeff's vitals. She avoided the topic of "how did you end up in a wheelchair and on a ventilator" - I guess she was waiting on the doctor to cover that.

She left the room, and we eagerly awaited the doctor's arrival. I had my notebook in hand, ready with questions and topics to cover. We were finally on our way to getting Jeff connected with a pulmonologist.

After 30 minutes, we figured the doctor was busy and running late. Maybe there was an emergency.

After 1 hour, we were pretty sour. The nurse lightly knocked on the door, slowly opened it, and told us in low tones how sorry she was. How the doctor takes a lot of time with his patients since he is so dedicated to them. He had several new patients before us. We asked her how much longer. She estimated another 30 minutes.

We decided to wait. We didn't want to have to reschedule. Sometimes these appointments have to be made months in advance.

And so we waited. After another 30 mintues, Jeff looked at me and said he'd lost all the fire we came in with. He no longer had the interest in asking questions or the energy to discuss options.

After another 30 minutes, 2 hours total in the exam room, I opened the door, and Jeff sped out. The halls were empty. For a second I thought everyone had left and we were locked in. But we turned the corner, and there was the nurse ... looking like she got caught with her hand in the cookie jar.

"He's with the patient right before you," she said, trying to persuade us to stay.

"This is unacceptable," Jeff told her. He knew it wasn't her fault, but someone had to know this.

I have a feeling it wasn't her first time. She told us that it really wasn't the doctor's fault. That if anyone is to blame, it's Scheduling - they schedule patients too closely together. By this time, all I could hear was Blah, Blah, Blah.

We asked for our co-pay back and she explained that all of the ladies in the front had left for the day, and there was no way she could help us - BUT someone from the office would call me tomorrow and refund our money (as I type this, today IS tomorrow, and no one called).

She let us out the back door, apologizing the whole time.

The door of the building closed abruptly, and we made our way to the van in silence. Jeff whizzed along on his chair, and I tried to keep up on foot. He told me gruffly, "I'll meet you there." The path for him was longer than mine, as I could easily step off the curb and make my way to the van. He had to drive to a break in the sidewalk where he could get down the path safely. He drove fast. He was probably the most angry I've seen him in a long time.

We arrived at the van at the same time. The parking lot was nearly abandoned. It was 6:15pm. I fumbled for the keys in my purse, not yet prepared to so abruptly be spit out of the office building.

In my shocked state of "what the **** just happened, I finally opened the van, loaded Jeff in, buckled him and his chair down, and slammed the driver door shut.

Then we both did something unexpected.

We started crying.

Not hysterically. Not the tears streaming, woe is me crying.

It was more tears in the eyes, exhaling in disbelief, frustration boiling over kind of crying,

"I'm so F***ing MAD!" Jeff screamed, his voice hoarse from all of the pent up anger inside him.

We looked at each other in the rear-view mirror, tears swimming in our eyes.

He continued. "And I feel so bad for you because now you have to start all over."

He knows how all-consuming and demanding it is to manage his care.

And for a few minutes, we sat in the van, alone, in complete shock at how we'd been treated. Curse words flew, tears fell, words of how this type of thing isn't helping our already difficult life were thrown around the van. We had bona fide pity party.

Then we pulled ourselves together. Jeff said, "Let's get home and see our daughter" who was happily playing with grandparents, blissfully ignorant to what we were dealing with. (We are so thankful for the help we have in our life).

We drove home in silence. Picked up dinner. Pulled in our driveway. Unloaded Jeff along with all the supplies we have to take, even to a destination only 8 miles away. Hugged our daughter. Ate dinner. And asked Evie how her second day of first grade was.

We were exhausted. We still had hours of work ahead of us that night.

But we were home and safe.

By the time my head hit the pillow, Jeff was already sawing logs.

These are they types of days I like to call Dementor Days. Harry Potter fans already know what this means. Dementors are demon-like creatures who suck the life out of you. They suck out all the good things about your life - your good memories, happy feelings, etc. and leave you feeling miserable.

Yesterday was a Dementor Day. It was truly a terrible, horrible, no good, very bad day.

And I was glad to see it come to an end.

Because Dementor Days are usually followed by better days.

And today was a better one.

Saturday, August 22, 2015

What I Signed Up For Ten Years Ago

A few years ago, before Jeff's injury, we talked about going to Hawaii for our ten-year wedding anniversary. We had honeymooned in Hawaii in 2005, then returned the next year for Jeff's parents' 40th anniversary cruise. We were never big travelers, but we did love going to Hawaii.

We even decided that we'd make a family vacation out of it and take Evie.

She'll be six by then - old enough to have fun and remember the trip for a long time.

And so we made plans.

Then everything changed. And our plans were washed away in the ocean with the setting Hawaiian sun.

Last week - August 20th - was our ten year anniversary. Jeff and I both braced ourselves as the day approached. We talked about having a Hawaiian-themed backyard party with family, highlighted by tropical music and fruity drinks, but that idea fizzled out. It's hard to plan events like that without knowing if Jeff is even going to feel good enough to get into his chair that day.

At one point Jeff told me that he didn't even want to celebrate. He didn't want to be reminded that we aren't where we had planned to be on our ten-year anniversary.

But about a week before the big day, he said he wanted to go out to a local casino and spend a couple hours there together. He doesn't often want to go out in public for extended amounts of time, and honestly, neither do I considering the amount of work involved. But I found I was pleasantly surprised with his suggestion and was really looking forward to it.

In the days leading up to our anniversary, Jeff and I shared wedding stories with Evie. She loves to hear stuff like that. We told her all the funny parts like how during the ceremony, Daddy was so nervous, and as he and I were holding hands, he nearly rubbed the skin off mine with his fidgety fingers. And how we both got dizzy during the ceremony as the yacht we were married on was doing circles in the harbor. And how we had to re-take a bunch of post-ceremony photos because the film wasn't advancing in the photographer's camera (that one actually wasn't so funny - and trying to explain what film is to Evie was a challenge).

On the morning of August 20, we were woken up by a cute little girl saying, "Happy Anniversary!" in a sleepy voice. She had gathered up a few things from around the house and presented them to us in a gift bag with "To Mama and Daddy" written in six-year-old scrawl on the front.

Later that morning, Evie and I got all nostalgic, and we pulled out my wedding dress. She had been asking to try on my "bride dress" as she calls it for a couple years now. (She dressed as a bride two Halloweens ago - thank goodness Jeff was in the hospital at the time because seeing his four year old in a wedding dress would have surely put him there anyway!) So I told her that today was the day she could actually try on my bride dress. Why not? August 20 is as good a day as any for a fancy dress.

She insisted I try it on first. Good news is that it still fit - barely. Bad news is that I could only breathe in it for about 5 minutes. But that was long enough for us to show Daddy and then take a walk around the house with Evie holding the train.

Here we are in our bride dresses

Then it was Evie's turn. I told her that if she wanted to wear the dress, there was one caveat ... she had to let me take pictures. Needless to say she was a willing participant.

We had a wedding photo shoot in her room. She posed and giggled as I snapped away.

It was like looking back into the past and ahead into the future all at the same time.

Afterward, we put the dress back in its plastic bag and hung it in the closet (it lives amongst all of Jeff's medical supplies).

Later that afternoon, I got Jeff dressed and up in his chair, Evie headed out to dinner with the grandparents, and Jeff and I headed to the casino.

I was both excited and anxious at the same time. We had been to this particular casino numerous times, but all before Jeff's injury. So whenever we go somewhere we used to go - when we lived our old life - I always wonder how it will feel to be back now that we're living our new life.

And I'm happy to say that it felt really good. 

We walked/rolled around the entire familiar casino, noting which machines had changed, the bar where we used to get drinks, and the blackjack tables Jeff used to play at. We talked about how flippin loud and obnoxious the slot machines are. We shared a beer. We spent all our allotted gambling money on the Wheel of Fortune machine. We cheered every time we got to spin the wheel and moaned in disappointment when it didn't land on the $1,000 slot. We ate dinner at a little cafe in the casino. It was deserted and quiet - totally our style.

We said we wanted to do this again. Soon.

We were happy.

And that's the point, isn't it? To be happy. Ten years married, and despite everything we've been through, we were happy.

On the way home, we picked up a cake we'd ordered a few days earlier. It was our way of adding a little tropical celebration to our anniversary. It was as close to Hawaii as we were going to get.

That night, we spent the evening doing our "normal" routine. All the stuff that comes with being a quad. We certainly didn't spend the evening the way either one of us would have imagined ten years ago. We didn't go out to a fancy candelight dinner. We didn't come home and share a bottle of wine and relax on the sofa listening to soft music. And we were very much NOT on a tropical island relaxing every stress, worry, and care away. We just can't escape like that anymore. There's simply no way to get around the demands of a spinal cord injury.

Later, as I went into the closet to grab supplies for Jeff, I noticed my wedding dress hanging there, twinkling in the light, surrounded by tubes, gauze, gloves, pills, and creams. The dichotomy hit me in the face. When I wore that dress ten years ago, I had no idea that this is where I would be right now. Like the dress, I was surrounded by stark reminders of an unplanned life.

I've often heard the expression, "I didn't sign up for this" referenced when life doesn't turn out the way you planned. When you are forced into a role you never wanted and never imagined yourself playing.

And while I certainly didn't hope for this life - for my husband to be paralyzed and for me to take care of him - I most definitely signed up for it.

Ten years ago, I vowed to be Jeff's "faithful partner in sickness and in health ... to cherish, honor, and respect him for as long as we both shall live." I made a verbal promise and I signed a marriage contract. If that isn't signing up for something, then I don't know what is.


I look at this picture from ten years ago, and I almost feel sorry for us knowing what's going to happen to our family. Our smiles were so genuine. So bright. So blinded by the hope of a perfect life to come. 

But things didn't exactly turn out that way.

Still, I'm glad we didn't know what was in store for us. We've endured a most harrowing ordeal, we've clung to our vows, and somehow we've managed to still smile on the flip side. Yes, our smiles aren't as bright. Life has weathered our bodies and our spirits. We've seen beyond the blinding sun and faced the storm lurking behind. 

And we've survived.

Now that is something worth celebrating.

Happy 10 years, my Love.