Monday, July 31, 2017

Dear Tucker's Dad

Dear Tucker's Dad,
I was feeling somewhat vulnerable and invisible, anticipating yet another change to my everchanging body. Rolling around the neighborhood, going fast, was to clear my head. I saw you and your son from a distance. He with his brightly colored bike helmet and shiny new scooter. You sitting attentively on the curb, baseball hat slightly askew. As I got closer I could hear words of encouragement as your son was trying out his scooter for the first time.
I rolled on by as the three of us said the obligatory "hellos" as neighbors do. Then I heard "you should race HER!" I immediately slowed and turned around. Smiling, I approached you and your son and said "would you like to race?" Your son's eyes lit up as he looked to you for approval, nodding your head and smiling back at him.
"Hi. What's your name?"
"My name is Tucker."
"Hi Tucker. My name is Deb."
"Hi Deb," you responded.
And with the same intonation Tucker responded "Hi Deb."
Tucker then began to tell me all about his scooter, and how it was his first time riding it, and how he was already fast. You sat there smiling, letting Tucker and I have a conversation as two new friends do.
We did race. Tucker won. After the race both you and Tucker said "bye Deb", and I rolled away.

A few days later I bumped into you and Tucker again. He was once again decked out in bike helmet and scooter. The two of you greeted me like an old friend, and Tucker told me all about how he has been practicing and getting faster. You mentioned that Tucker had been talking about how fast I rolled away the other day. We talked a little more and said our goodbyes.

What you gave to me and Tucker the other day is priceless. Allowing Tucker to become "my friend" and relate to me as a person - not to be feared, not to 'get out of her way'', not to 'watch out' - made me feel visible. And what you taught Tucker in that instant! He learned that people like me are approachable with value and gifts, just like the rest of the population.

Thank you Tucker's Dad for making my days a little brighter.


Saturday, July 29, 2017

Laughter IS the best medicine

I woke up knowing that they had done the surgery laproscopically.
Dry irritated throat.
My jaw aching from some sort of equipment holding it open.
As best as I could
I reached to touch my ostomy bag.
It was still there.
I must have dreamt that with another hole disappears the other.
Not true.
Pain meds.
Up to urinate.
Something about paper pants and no bra
And a very bumpy I-95 ride home.
Boxes of unknown supplies met us at the door.
Along with hesitant looks by my children.
Sister stroking my arm
Letting me cry
Waiting until I fell asleep.
Long, painful night
Brings in the less painful morning.
Gravity feeding.
Learning a new normal.
Best Lysol Soda shows up
With stories and laughter
Pictures and distractions.
Creaky, soft voice
Becomes creaky, louder voice.
"It hurts when I laugh"
Uttered and moaned.
But I don't want it to stop.
Something reassuring having Lisa sleep
In the room of my teenage daughter
The same age we were when we giggled.
Pain less.
More feedings.
Some food by mouth.
Out rolling around the neighborhood
With Lisa going slow.
Apprehensive about going by myself.
Life moving on.
Tiling bathroom.
Ripping up floors.
New bed for old bed.
Four women hiding in the bathroom
As ordinary as sitting in a bar.
Once being the crazy woman in the pwc who rode around 6.1 mph.
Now being the crazy woman in the pwc with the small couch pillow pushed against her abdomen
Riding a cautious 4.5 mph - temporarily.
First independent ride.
Seeing the Momma deer
First time in two weeks.
Staring me down.
"Where have you been?"
We seem to ask each other.
Trusting me enough to bring her babies into view
Less spots
Bigger bodies.
Cool breezes
Bring me home.

Sunday, July 23, 2017

Are we unraveling?

The toilet paper holder in our master bathroom is possessed. When it gets to the point of having a quarter of the toilet paper left on the roll, it starts unraveling on its own. Turning and unrolling until the toilet paper is hanging by the glue that keeps it on the cardboard tube.

Adam and I were hanging in our bathroom recently, doing the things that we do, when we noticed, once again, our possessed toilet paper holder take action. We both watched it, and at about the same time commented on how this unraveling is quite a good metaphor for our lives. Though we got a good laugh about our coinciding thought, and even commented that this would make a good blog post, I didn't give it much more thought until yesterday.

Our lives are possessed by ALS and seem to be unraveling before our eyes. Sometimes we are just observers to the unraveling and there is nothing we can do but watch. Sometimes we can roll the paper back up on our own through laughter and love. Sometimes we need others to help us roll the paper up with friendship and camaraderie. Sometimes we need the help of strangers.

It's the little things that happen in our lives that help me roll the paper back up and I am not sure that the people involved know or understand how much they help. Like when...
~all my kids are home for dinner and we spend time just hanging out talking at the table.
~I go out to dinner with friends and the restaurant is loud but my friends lean in to hear my participation in the conversation, and patiently wait for me to get my words out.
~Adam reminds people through subtle comments that I make decisions for myself, that he doesn't make them for me.
~a retail company stretches the rules to accommodate our different needs.

This week I feel like I am unraveling due to my upcoming feeding tube surgery. And though I logically understand the need for such, and I welcome the assistance with nutrition (eating is taking so much effort), I don't look forward to having a second hole in my abdomen. One hole for nutrition to go in, the other for waste to go out. Honestly it creeps me out. I dare say it out loud? But the feeding tube represents (to me) one step closer to the end of my life.

So we move forward. Feeding tube. Having a new normal. And somehow the toilet paper will get rolled back up. It won't be even or straight, but we will make it work.

Sunday, July 16, 2017

What is it really like?

While sitting on our upstairs toilet last week I noticed the brand name sticker on the shower wheelchair. It is made by a company called EZee Life. Really. As if ANYONE who has to use a shower wheelchair, especially one that leans back and has a headrest built in, has an EZee Life! I get the marketing behind such a name, but it kind of pissed me off.

I have ALS and a lot of attention is focused on my needs, my loss, my grief. Honestly it is really hard for those in my immediate circle, particularly my caregivers, particularly Adam. On top of taking on an enormous amount of responsibility and caring for me, my loss is also his loss as our futures are so intricately entwined. We expected to grow old together, and maybe we still will. But the plans we had for our later years are forever changed as ALS has altered our path together. It is not an EZee Life.

Everything we do takes effort. Everything has to be planned out and will only get more so as my body movement becomes more limited.  I am overwhelmed with all the physical labor it takes Adam  to get me into bed. I'll break it down for you:

1. Adam gets the stairglide to the bottom of the stairs and sets up the pivot disc.
2. I move my pwc in position in front of pivot disc.
3. Adam lifts me from the pwc, and using the pivot disc, places me into the stairglide.
4. Adam gathers everything we need to take upstairs into the bucket - meds, pill container, phone, iPad, chargers, etc.
5. He heads upstairs with stuff and I follow behind on the stairglide.
6. Adam sets up pivot disc and manual wheelchair at the top of the stairs.
7. Adam lifts me from the stairglide and pivots me into the manual wheelchair, which requires holding me with one arm and the wheelchair with the other.
8. He then puts my feet on the foot rest as I can't really hold them up anymore, and wheels me to the bathroom.
9. He takes my feet off the rest and sets up the pivot disc in front of the toilet.
10. Adam then lifts me up from the manual wheelchair and pivots me, using one arm to hold me and the other to take down my pants and underwear.
11. He then has to carefully lower me onto the toilet, into a position in which I can best self care, as well as being aware of my left knee which tends to lock.
12. I take care of business but it requires some help from Adam ...things I never thought he would have to do. It is a little more complicated due to ostomy care.
13. When I am done Adam has to change me into pajamas which we do with shoes on because we need them on for traction.
14. Once my pajamas are half on Adam lifts me from the toilet, holds me with one arm, pulling up my pants and underwear with the other, pivots me, and puts me in the manual wheelchair.
15. Then to the sink where he washes me up and helps me brush my teeth.
16. Adam wheels me to the bed. He has to put the pivot disc on a riser because our bed is so high and it is the only way to get me in.
17. He positions my feet just right, lifts me while standing on the riser, and pivots me until I am sitting precariously on the edge of the bed.
18. While steadying me on the bed, Adam quickly repositions himself and flips my legs onto the bed.
19. Then there is repositioning me until I am comfortable, putting the bed in the right position, making sure my right foot is straight against my foot pillow, etc.

I am not sharing this for people to feel sorry for us, or for you to look at Adam or I in any different light (though he is a pretty awesome guy). I just want people to know that this disease, like all traumatic health changes, affects the CAL just as much as the PAL. Adam gets sad about how things have turned out, and has difficult days. I would be worried if he didn't. Then there are the days when we laugh through face washings, and he is stealing kisses with every transfer. It is not an EZee Life, but it is ours, and I am blessed to share it with Adam.

Wednesday, July 12, 2017

My world of autocorrect

We have an Echo. My brother-in-law, Lew, kindly bought it for us when I was out of work last year. It's been a great source of entertainment from playing music (mostly country) to ocean sounds (for meditation ) to most recently podcasts (I JUST started S town). I like the puny dirty jokes.

Now that my voice is going, I admittedly sound like a drunken sailor on a good day, and even my family is starting to have trouble understanding me. -- talking to my Echo, or Alexa as she is so fondly referred to, has become its own source of entertainment.

Me: Alexa, table lamps on.
Alexa: I'm sorry, I don't know table eels.
Me: Alexa, table lamps on.
A: I'm sorry, I don't know tattoo limps.
Me: Alexa, table lamps on.
A: I'm sorry. I don't know T. E. Z. Laps.
(Deep breath)
Me: Alexa, table lamps on.
A: please refer to your Alexa app to turn on your titty amps.
(Second deep breath after five minute fit of giggles)
Me: Alexa, lamps on!
A: okay
(Lamps go on)

This is a daily occurrence.

Me: Alexa, play country music.
A: playing coat and mullet by---
Me: ALEXA, play country music!
A: playing country kitchen by---
A: playing today's country.

Sometimes, I just give up and let her play whatever she thinks she heard me ask for.

Then there is my phone. Oy. Texting with my fingers has become very difficult for me, so I am using my voice recognition software on most interactions. I wonder what my neighbors think of me as I break into fits of laughter as I "talk to myself" in the backyard.  Trying to tell my family via text that my feeding tube was scheduled for July 26th, originally came out as: I'm sexting the feeling too for July tweety sit.  

I laughed for ten minutes.

If I don't lap I wilt die.
If I don't laugh I will cry.

Live to Love. Love to Live.

Monday, July 10, 2017


I had a bit of a scare this morning. In order for it to lose its power over me I thought I would write about it.

Adam was transferring me to the toilet like we do every morning. For some reason when I sat down I felt like I was going to pass out. The world around me started to go black and I got very dizzy and Adam had to hold me up on the toilet.  I began to sweat and Adam put a cold washcloth on my face and the back of my neck. After a few minutes I felt fine just a little weaker than normal.  I went back to bed and slept for a few more hours. Now I feel like myself, just scared and freaked out.

I don't know why this happened. Maybe I got up faster than I normally do. Maybe I was dehydrated or extra tired. It probably was the ALS. I don't know. But it scared me and prevented me from going out today and paying my respects to a family I know and love who just lost their father/husband over the weekend. And it makes me really mad when the ALS prevents me from being who I really am and doing things I would normally do.

Another strategy I use in order for scary things to lose their power is I think about my blessings and write them down if need be. I just gave this advice to a dear friend of mine, and as I was telling her to do this, I thought I need this today as well. So here it no particular blessings from over this past weekend:

1. Getting up early on Saturday to drive with Adam and Ean to watch the Patriots play baseball.
2. The shady trees we found to watch the games under.
3. Watching Ean play more baseball Saturday night.
4. Seeing the sky turn beautiful colors as the storm blew in.
5. Getting to the van just as it began to rain.
6. Marian coming over a few times on Sunday to help me so I could stay home.
7. Sarah and Gillian helping me take medicine, feeding me, straightening up, and running errands.
8. A visit from Adrienne and Sue.
9. A visit from Gina and Charlie.
10. Picking up where we left off even though I haven't seen Charlie in over 25 years!
11. Fresh banana ice cream (oh. My. Goodness).
12. Chocolate cake!
13. Living in a neighborhood where you make new friends by loving on their dogs.
14. Living in a neighborhood where your new friends hug you goodbye.
15. Living in a neighborhood with majestic trees that provide shade and rustling breezes.
16. Living in a neighborhood where you can see this:

17. Parents who are very willing to cancel their plans and put their lives on hold to care for me.
18. Friends who love me and I love back...


Thursday, July 6, 2017

Performance Art (?) a.k.a. Deb is losing her mind

First there were just potatoes. The kind you bake. Some small. Some larger. There were about six of them scattered about a foot and a half from the curb. The first time I took notice of them I thought they were rocks. You know the kind that people put in their landscaping beds. The first time I just rolled on by.

The next time I saw them I realized they were potatoes. Because they had started to shrivel a bit from the hot summer weather. I stopped this time thinking about where six potatoes had come from, sitting on the side of the road, in the middle of a suburban neighborhood. I took note of their positioning. The two little ones separated a bit from the four larger ones. I looked around to see if there was anyone out and about noticing me noticing the potatoes.  There wasn't.

The next day I had a destination in mind as I set out in my PWC - to the potatoes. As I rolled up, something was askew. The two little potatoes had been smashed. Not run over by a car smashed, but rather hit by a hammer smashed. The other four lay there pretty much untouched except for some rotting potatoes will do when left out in the elements. I looked around again expecting someone to be watching my reaction to, which in my mind, had become some sort of performance art piece. Again, no one.

The next evening I set out for a walk with my Mom. As we got closer to the 'potato stage', I casually mentioned the potatoes. Of course we stopped. All the potatoes were as they were the night before.  Tonight, sitting in between the larger, now mostly shriveled potatoes, was the head of a frog. Yes. Just the head. Now this got me thinking. Did the frog lose his life searching out the potatoes for a food source? Do frogs eat potatoes? If the frog had gotten run over, wouldn't the potatoes been flattened? Maybe a crow had dropped the frog mid-eat when he saw the more desirable potatoes? Wouldn't a frog be more desirable to a crow than a potato? So many questions, but my Mom wasn't really interested in looking at the dead frog much less than the rotting potatoes. As I rolled away I looked around for a camera as I had grown sure that this was being filmed.

Today it is drizzling. I didn't let that stop me from participating in this performance art piece. I set out, a little anxious about what I would find. I anticipated that something would have eaten the frog head. I found myself hoping that the potatoes would remain untouched. As I got closer I began giggling. What the hell is wrong with me that I am letting this, of all things, occupy my thoughts?! Despite questioning my sanity, I rolled up to the spot (still looking for cameras out of the corner of my eye) and stopped in disbelief. The potatoes remained untouched. The frog head was still there, but someone had taken the time to cover it gently with a yellow leaf, creating a little shrine for it made of pebbles and twigs. My jaw dropped. I was still. Tears welled in my eyes. I quickly rolled away. If there was a camera recording this, I didn''t want it to catch me crying over a shrine to a frog head.

The drizzle turned to a steady rain as my tears subsided. I head home. I decided that a child, out exploring the neighborhood as they should during these long summer days, found these unusual items and did as children do. I hope this child finds the tree bark shedding down at the other end of the neighborhood. I'm curious where that will lead.

Monday, July 3, 2017

Some stuff...

You can tell a lot about people by what is in their recycling cans. Who washes their whites in bleach; who buys organic food; who has a big family (five full cans) or who might live alone (one half can). Who just had a birthday party (hot wheels boxes) or who just had a party (vodka bottles). It sounds a bit voyeur -istic but when you ride around the neighborhood as much as I do and you are about as tall as a recycling can, you notice these things.

Tonight the neighborhood held the aromas of a holiday weekend. Barbecue chicken down one street; a fire pit burning down another. The smell of weed burning and people lighting sparklers.

On my dusk ride I saw the biggest fox I saw ever saw in our neighborhood. He had this big bushy tail and a thick coat of reddish-brown fur. He jumped out of the bushes to cross the street only three feet in front of me and when he got to the other side he looked back at me as if to say "I'll see you tomorrow."  Then he slowly crept off, a fat neighborhood cat close behind. I tried to talk to the cat and convince him not to follow the fox, but he had no interest in what I had to say. I hope I see him tomorrow too.

We went to see fireworks on Friday night. The Lawrenceville fireworks at Rider. I love fireworks. They always bring me back to Roosevelt Fourth of July celebrations with crepe paper decorated bicycles, birch beer from a keg, and musicians playing at "the head". For many years we would have fireworks at night due to the know-how of Brydie's Dad. That day was always magical to me. George Katz seemed to always win a big raffle prize, everyone from town was spread out on blankets and lawn chairs on the school grounds, and the mood was light and joyous.

I was looking at my friend's Disney trip pictures on Facebook. He has two young children, about the same age that Sarah and Gillian were the first time we took them. I was brought back to five year old Sarah dancing with Snow White during the parade. I remember how the sight of my little girl looking up at the characters with such adoration and pure joy caught my breath and made me cry. I still feel that way when I look at my kids. I had that reaction when Gillian and Ean helped me yesterday in a situation that we all knew was uncomfortable. The love, pride, and appreciation - it is indescribable.

I recently read an opinion piece written by a psychologist (psychiatrist?) who has children and lives with brain cancer. She spoke about the pressure of keeping her kids' lives "normal" in the midst of a "not normal" situation. Pressure on her kids, not her. I could totally relate to this. I initially felt like my kids had to plan to keep their lives "normal" this summer - with jobs and volunteer work and extraordinary plans with family and friends. When actually there is nothing "normal" about our lives right now. There is nothing normal about a Mom who sleeps three hours every afternoon, or can not feed herself. Maybe they just need to stay close. So no more talk of keeping things "normal".  We are just going to "be".