Tuesday, November 25, 2014

Itches, Scratches, and Acceptance

I'd like you to try something.

The next time you have an itch on your face, don't scratch it.

Pay attention to how it feels. Probably something like an ant doing a little dance on your face.

You can try to alleviate the itch by moving your facial muscles, even tilting your head back and forth to see if that will help. Stretch your face long, then scrunch it up tight to see if that works.

It's likely the itch is still there. And it's probably multiplied in intensity by now. Or spread so that other areas are starting to itch. Maybe it feels like a whole army of ants are now marching about your face.

When you have reached the point where you can no longer stand it, call someone in from another room, and ask them to scratch it for you.

Be sure to explain exactly where the itch is. And how hard they need to scratch it. Is it the kind of itch that needs quick intense fingernail action?  Maybe it's the kind of itch that would be best alleviated with a firm rub of the fingertip. Or maybe you need one of those roving scratches that starts out in one spot and gradually moves in a plane along your face. Be sure to specify if the scratcher needs to go right or left because your right and left will be opposite from the scratcher's. "Go right - no, MY right."

If you've made it this far without scratching any part of your body, you've done better than me.

I think my point is clear.

Can you even imagine not being able to scratch your own face? I can't. As close as I am to someone who is paralyzed, I myself am not. And I really can't imagine not being able to do that task for myself.

A friend of mine recently sent me a link to a video about Travis Roy who became a quadriplegic in a college hockey game in 1995. (You can see the video here.) The video is very moving and contains commentary from people close to Travis, as well as Travis himself. His coach, Jack Parker, recalls visiting Travis in the hospital and tells about a moment where the reality of paralysis struck him.

"I used to go over every night after practice and visit Travis. About the fourth or fifth night I went over, it was the first time I was alone with Travis. He said to me, "Can you do me a favor, Coach?" I said, "Yeah, what's that Travis?" He said, "Will you scratch my nose.""

Jack Parker said it was in that moment he realized how hard things were going to be for Travis.

I think one of the greatest difficulties in living with paralysis is the realization that simple things like scratching your own nose is going to be accomplished so differently now. Your itches won't get the immediate attention that they used to. And not being able to scratch your own nose is just the tip of the iceberg.

Accepting a new way of life after paralysis is very difficult. But acceptance is a necessary part of moving forward. Jeff and I were just talking about this the other day. We realize that we've gotten to a point in this journey where we have accepted our new way of life, and that has helped us to keep going. Accepting something isn't the same thing as "liking" it or even truly being "okay" with it. Believe me, we aren't throwing any "Yay for paralysis" parties. I hate that my husband is paralyzed. Jeff hates it most of all. But in order to live with it, we must accept it. And that's what we've done.

Along with accepting comes adapting. And anyone who lives with a disability knows that adaptation is a necessity. In the face scratching scenario I described above, Jeff and I have come up with some ways to make this a little easier. We have key words and phrases to describe the location of the itch.

For example, what is the area called on the uppermost part of your ear, just under the flap? We didn't know either. So we made up a name. We call it the "high side." So when Jeff is squirming and making the I-have-a-crazy-itch face and he's saying "high side, high side!" I know right where to scratch. And if the itch is anywhere around his mouth, he just pokes out the spot with his tongue, and I know where to land the scratch. We'll be in the middle of a conversation and he'll poke out an itchy spot. I'll scratch it, and there won't even be a break in our discussion.

So as this day of Thanks approaches, I've decided to forego the list of what I'm thankful for because truth be told, I could write a list longer than Santa's. This last year and a half has given me more to be thankful for than all previous years.

I think what I'm most thankful for right now, at this particular time in my life, at this mile marker along our journey, is that Jeff and I have gotten to a place of acceptance. We are working together to adapt to this new life, discovering that teamwork is both a necessity and blessing. We have a deep mutual respect for one another, understanding that each of our roles is enormously difficult in itself.

We keep going because we have each other.

I scratch his itches because I know he would scratch mine if he could.

That's a lot to be thankful for.

You're my backbone, you're my cornerstone
You're my crutch when my legs stop moving
You're my headstart, you're my rugged heart
You're the pulse that I've always needed.
Like a drum, baby, don't stop beating
Like a drum, baby, don't stop beating
Like a drum, baby, don't stop beating
Like a drum my heart never stops beating ... for you

-Gone, Gone, Gone by Phillip Phillips

Thursday, November 20, 2014

Time Spent With a Dear Friend

Guess what I did last night (on a school night of all things ...)

I went out with a friend.

It was the first time since Jeff's accident that I'd done that.

And do you know what? ... I had a really nice time.

I've never been one of those gals who pals around with a gaggle of other ladies. I can count, on one hand, the number of best friends I've ever had. That's just me. I prefer one on one or small group interaction. The dynamics of a big group are simply too much for this introvert. So when the opportunity came up to spend some quiet time with a friend, I made myself make the time for it.

The particular friend I went out with last night understands my situation. She's known my family for a few years, so she's gone through the transition with us. She knew the old Sachs family, and she's been there for the new Sachs family. She's also been through a lot herself the last several years, and our mutual struggles have drawn us closer. Simply put, she's one of the few who "gets it."

We decided to go out in the evening - after dinners were had and families were pretty much settled in for the night. As I got ready to go out, I pulled on  jeans and a sweater rather than sweatpants and a pajama top, and I told Jeff how weird it felt to be getting ready at this time of night. First of all, it felt like it was midnight - and it was really only 7 pm. I was tired from a long day of working, driving around town to appointments and to pick up food, and playing with a 5-year old. Second, I felt like I was sneaking out of the house. Like what I was doing was forbidden. Jeff laughed at me and told me to have a good time.

Evie, of course, acted like I was leaving for a trip around the world.

"How long will you be goooone???" she asked as she tightened her grip around my waist. I told her only a couple hours. "So you'll be back before I go to bed?" Time is such a difficult concept to grasp at five years old. I told her she would be asleep soon after I left, and by the time she woke up in the morning, I would be back. "Oh" was her response accompanied by big, sad eyes.

This display was not helping get me out the door. But I was determined to not let it stop me from going out.

I fussed over Jeff, making sure everything was just so, and I would have continued fussing if he hadn't shooed me out of the room. I flossed Evie's teeth in preparation for Nana brushing them, and I was reassured by Nana that she would hold down the fort while I was gone.

So with everyone in a comfortable holding pattern, I stepped out the front door.

It was so strange driving at night. I hadn't driven after dark in so long. I actually saw one house on our street already beautifully decorated with Christmas lights. As I pulled out into traffic with headlights in front of me and the Christmas lights shining in my rear-view mirror, I was taken back to last year around the holidays when Jeff was still in the hospital. I would drive the 25 miles to Rancho los Amigos in the evenings after having come home for a few hours to spend time with Evie. The Christmas lights would light my way, reminding me that this Christmas would be so different from any other. Some evenings Evie and I would go to the hospital together to eat dinner with Jeff. On those nights, we would say goodbye to Daddy, hold hands as we made the long walk to the parking structure in the chilly night air, and drive home listening to Christmas songs on the radio.

Tonight, however, I smiled as I drove knowing that Jeff would be home this holiday season. Thankful that I was driving to meet a friend rather than to visit my husband in the hospital.

My friend and I arrived at our destination - a small, local establishment - and immediately fell into easy conversation over a glass of wine. Not that our topics of conversation were light. In fact, they were probably heavier than most. But when you have someone to talk to who genuinely lends you both her ear and her heart, the words seem to flow effortlessly no mater how heavy the topic.

For two hours we sat together and talked. We told stories that gave one another goosebumps. We listened to each other with big, glossy tears in our eyes. We did cheers to our triumphs, laughed at our absurdities, and shook our heads in disbelief at how we, as people, can bear and endure the enormous difficulties of life.

At the end of our evening, I gave my friend a big hug thanking her for getting me out of the house, for not being afraid to talk about the messy stuff, and for being one of the few who really "gets it."

When I got home, everything was safe and sound. Nana was just climbing into bed, Evie was fast asleep, and Jeff was comfy and happy to see me. My world hadn't fallen apart in the two hours I stepped out of it, and that was a good thing.

As much as I want to stay in my little cocoon where it's warm and comfy (despite being filled with the aftermath of a tragic accident), it's important to step out every once in a while. To see what lies beyond the insulating walls. For it's only when we step out, look around, even look at ourselves from the outside, that we truly grow.

I'm thankful I had the opportunity to do that last night for a couple hours with a dear friend.

Monday, November 10, 2014

To Tame a Wild Carpet

Over the weekend, we finally got out of the house as a family.

It's been a while since Jeff's been out. The pressure sore on his foot has prevented us from venturing beyond our front and back yards. Lately he's had to wear a pouffy black boot to pad the bottom of his heel whenever he's in his chair. But on Saturday, I padded up his foot with all kinds of wound care supplies, and he was able to wear his shoes for a short period of time.

So off to the park we went.

Evie has been telling us this past week that she has finally learned to swing all by herself (!!!) She informed us, proudly, that she no longer needs the lunch teacher to push her. She's learned to pump her legs and use her arms to pull herself forward, and has discovered that these combined movements translate to perpetual motion.

The park we went to is actually Evie's school. The grounds are open on the weekend, so she was able to show us her new skill on the actual swing she learned on.

It was a big deal.

We all got out of the van, and while I was closing up, Jeff and Evie were off. Evie led the way with quick footsteps, and  Jeff cranked up the speed on his chair and whizzed through the open gate. She was on the swing, pumping away, grinning from ear to ear by the time I got in the gate.

Jeff and I found a nice spot in the shade, and we watched as our girl reveled in her new ability.

While she swung, she started telling us all kinds of things about school. Why is it when we ask about school she never has much to say? It's when we're least expecting it that a whole slew of stories comes out.

She said she was so glad to come to the swings on the weekend because during school days there's a timer out by the swings, and you can only swing until the timer dings. Then it's time to get off and give someone else a turn. But on Saturdays and Sundays, "I can swing as long as I want." :)

She also told us the names of some of the animals on her school's farm. (Her school has a working farm on the grounds complete with all kinds of animals and a garden for each class). There's Roxy the girl sheep, and Goy the boy sheep. And there's Cookie the black and white bunny whose "carriage" is decorated with butterflies and dragonflies. And of course there's the massive desert tortoise who (in my opinion) has the best name in town: Mr. Tortell.

After swinging "as long as she wanted to," she was off to the big kids' playground - the one the Kindergarteners are not allowed to play on during school. She thundered across the blacktop with Jeff hot on her heels. Once there, she climbed like a monkey on the structures. The big playground is close to the edge of the farm, so we got to see some of the animals she told us about. She pointed out Roxy and waved to her. We tried to get Roxy to come to the fence so we could take a closer look at her, so Jeff made a clicking noise with his tongue in an attempt to lure the animal closer.

The clicking noise he made sounded just like the clicking he does when his air comes off. Our family has been conditioned to respond immediately when we hear that sound. I knew what he was doing, so I didn't need to check the connection. But poor Evie was at the top of a slide when he began clicking. I saw her as the sound registered in her brain. She looked up quickly at Jeff and shouted, "Oh NO!"

We apologetically told her that Daddy was just trying to get the attention of the sheep, so there was no need to worry. Our words were met with a stern expression and some chiding: "Daddy, you shouldn't make that noise. It sounds just like when you need your air. You should make a different noise when you are calling the animals."

I guess she told him.

She went back to playing and Jeff and I enjoyed watching her. Jeff especially enjoyed letting the warm sun soak his face. Since he's usually cold most of the time, he loves warm weather. At home, he's like a cat - he'll find the beam of sunshine coming in a window and maneuver his chair into that spot so he can be warmed by the sun. Today, outside, he was like a lizard sunning itself on a rock. He turned his chair full into the sun, closed his eyes, and let the rays warm his body. It was nice to see the little smile on his face as he sunned himself.

The next day, Sunday, Evie asked if we could go to the park again. This time it was just me and her. As we walked along the blacktop, I was taken back to a few weeks ago when I took her to a different park. Jeff hadn't been feeling well, so it was just me and Evie then, too. As she played that day, in the background was a little boy who was learning to ride his bike without training wheels. His dad was next to him, pushing him along, encouraging him to keep pedaling.

I watched this father and son as they made memories of this momentous occasion. I smiled sadly for behind my sunglasses were tears of pain, knowing that Jeff will never be able to run next to Evie's bike, his hand letting go of her seat as she wobbles along the path of transitioning from a little kid to a big girl.

Sometimes the sadness of this injury is so overwhelming.

Back in the present, I sat on a swing next to Evie while she swung happily into the air, her hair blowing all around her face.

As she pumped, she sang a song from Sophia the First:

To tame a wild carpet
You can't be afraid to try
You gotta hold on to the tassels
And reach up for the sky!

Just as I was about to fall back into the sadness of Jeff not being able to experience this moment, I realized that all too often I let the sorrow of a life left behind take over occasions like this. To the point that I forget to live in the here and now.

Evie sang the song again, and this time I listened closely to the words. I felt like they were speaking directly to me. So for the first time in a long time, I began to swing too. Evie's eyes lit up when she saw me.

"Mama! You know how to pump too!" We both smiled and laughed.

After the swings, we walked across the blacktop and I told her how my dad (Papa) used to take me to my school on the weekends and how we used to play wall ball. I explained to her the rules of the game, and told her - much to her delight - that I would get her a ball soon and teach her how to play.

Then we walked around the perimeter of the farm, checking out all the animals. We watched bunnies nibble on a pile of fruit the farm volunteers had left for them. We saw two ducks fight and bite one another over a piece of celery. And we marveled at the volume of the rooster's call.

We even had a close encounter with the wonderful Mr. Tortell.

Finally, before heading home, Evie wanted to try sliding down the big pole on her playground. She hadn't gotten up enough courage yet to do it on her own, without help. After she went down it a couple times with me barely holding her, it was apparent she could do it easily on her own. She just needed encouragement. After some tearful moments followed by my weak threat to just get in the car and leave, she faced her fears and slowly, methodically, slid down the pole ALL BY HERSELF. As her feet touched the sandy ground, she looked up at me, red faced with remnants of tears still in her eyes and blurted out, "That was fun!"

It felt good to experience this "first" together. Just me and her. For her to experience that feeling of accomplishment in gaining a new skill, and for me to allow myself to live in the moment with my daughter.

I felt like I'd tamed a wild carpet.

It was a good feeling, and it was a good day.