Friday, June 23, 2017

rediscovering joy

Tonight I rediscovered joy
In the laughter of my children
And the twinkle in my husband's eyes.
In red jello with whipped cream
Keen conversation
And gentle caring hands of my son feeding me.
I found joy
In rolling through dusk
The first lightning bugs of summer
Humid cool breezes
Rushing through the trees
Promising rain.
I found joy in dark grey clouds
Creating mosaics against the sky
Bats beating wings
Cicadas coming awake
Roosters saying goodnight.
I found joy in fragrant flowers
Wet earth
Musky mulch
And the wood burning in backyard fire pits.
I found joy in moving fast
The darkness overcoming the road
Not being able to see in front of me
And trusting the familiarity of my path.

Really negative blog post

WARNING: THIS BLOG POST WILL CONTAIN LOTS OF CURSING, MY POLITICAL OPINIONS ON SOME TIMELY TOPICS, SOME GENERAL WHINING AND A BAD ATTITUDE. PLEASE PROCEED WITH CAUTION.

I fuckin' hate ALS. I fuckin' hate that I have it, that other people have it, and that it exists at all. I wouldn''t wish this disease on my worst enemy. It's true. If I were to be confronted with the most evil person in the world, and I got to pick how they would come to their demise, I would not choose ALS. I hate it that much. It is stealing my time. It is stealing my independence. It is stealing my ability to be a productive member of society. I fuckin' hate it.

This has been a pretty shitty week (I warned you about the cursing). ALS, allergic reaction to something (maybe a med, maybe not), hives, excruciating heartburn, not being able to scratch my own itch, my voice changing more, eating like a slob when I try to do it on my own, limiting my eating because it is giving me heartburn and because I am eating like a slob, giving in to having Adam feeding me, sleeping a lot more because of all the fuckin' Benadryl I have been taking, an ER trip, two trips to the doctor, one emergency call to some friends just so I can cry, AND the dreadful consult with the surgeon to discuss my upcoming feeding tube (which turned out to be not so dreadful but did make me sad).

Did I mention I fuckin' hate ALS?

AND there is this: Two people I know said things to me in the past few weeks that have really hurt my feelings. Don''t worry - it's not any of you. :) I am sure that they didn't mean it. I am POSITIVE they didn't mean it. And maybe I am ultra sensitive because, you know I have ALS and 50% of my time I am on the verge of tears. But the words. They were said. And now I have to decide if I want to tell my friends "hey not a cool thing to say to a person with a terminal illness" or I just want to let it go. I think people don't know what to say...

There are days when I feel like I can handle the big stuff - like ALS - and it is the little stuff that gets me all pissy and cranky. This week was like that. ALS okay. Heartburn throws me over the edge. Having an ostomy - okay. Having hives all over my body. I want to throw myself over a cliff. Knowing that a bunch of men are sitting around in a secret meeting making decisions about Healthcare reform without the input of the representatives that I voted for - that makes me sick to my stomach. I think many people are like that. It's the straw that gets you in the end.

Talking about my ostomy...June 22nd was my one year anniversary with "Consuela". It was my one year Consuela-versary. We had a little party, she wore a little hat...No, not really. REALLY, she has served me well and I thank G-d every day that I made the decision to have my colon removed and eliminate UC from my life.

Okay. I must admit that this week was not all bad. I did go to a fancy breakfast to support my friend Stephanie as she was honored with a Women In Business award from the Princeton Chamber of Commerce. I am so proud of her and was touched as she chose Adam and I to be her guests.

As I was getting in the van yesterday two baby birds were learning how to fly, and one got so tired it landed on my wheelchair. It just sat there, gathering up enough energy to take off again. We both froze - the bird and I. Finally it took off.

Adam and I took a jaunt around the neighborhood and got really close to a deer. It was a young buck. He was so still that at first I thought he was a lawn ornament. He wasn't scared; kind of looked at us and trotted away.

My cousins Alice, and Bonnie and their families are walking in an ALS walk on Saturday in my honor. They are going to be wearing cool t-shirts and carrying a big, blown up picture of us. I love them all so much.

So here it is, Friday. The last day of a pretty crappy week, that had a few good things mixed in. I'll pray this weekend that the meds, shots, home remedies will make me more comfortable, that they will find a cure for ALS, and that the upcoming days days will be filled with more good than bad.

Monday, June 19, 2017

Birds

I have become a watcher of birds. Not necessarily a bird watcher, because I don't search them out or know all their names. I love to sit on my back deck and watch the birds come to the feeders, pick out what they like, push aside what they don't, and fly away.
Blue jays
Cardinals
Red headed woodpeckers
Other, smaller woodpeckers
Sparrows
Mourning doves
Crows
Red-winged blackbirds
Sparrows
Grackles
Chickadees
Finches
They all come and I watch them. The blue jays are huge and kind of mean. They are the top of the pecking order (see what I did there?). They make a ruckus as they approach the feeders. Scaring off the smaller birds, they pick out sunflower seeds and fly to the nearest branch. With one foot they hold down the seed on the branch, peck at it with their beak, until it opens up and they can eat what is inside. The males and females have the same markings but the males are bigger.
It might seem kind of boring sitting there watching birds, but I have come to enjoy it. I appreciate the gracefulness and independence they have as they fly about, tree to tree, stopping occasionally to chat with one another. I wonder what it is they are talking about...where the best seeds are, or have your fledglings learned to fly, or did you hear about the bird that flew himself into the window and knocked himself out cold.
In my front yard, when I lean back and put my face to the sun and the sky, I can watch the sparrows that have made their nests in the knot holes in our cherry trees. Earlier in the Spring there were baby birds in these nests, making quite a bit of noise as the momma birds flew in and out. Now I don''t hear as much noise, but some momma birds seem pretty protective of the space, so I suspect new eggs have been laid by some new tenants.
There are times when these front yard sparrows are chatty, calling to each other from branch to branch. Other times they grow silent. Still and silent. Observing what is around them. Seemingly watching me as I sit still under where they are perched.
I often wonder what it would be like to be a bird. Hollow-boned, light, flying, chirping. Worrying about primal needs like my next meal or the protection of my eggs, rather than laundry or why my phone keeps dropping my wifi password.
Writing a whole blog post about watching birds. Well, I didn't expect to be doing this at this time in my life. I don't think I ever expected this. Watching and observing the birds has become part of my daily routine. Things change. I have changed. My expectations have changed. We'll keep flying along, me and the birds.






Tuesday, June 13, 2017

Pushing through and breaking down

Most days I push through
I push through
    Muscle spasms
    Pain
    Body parts that don't work
    Humiliation 
    Curious looks
    The loneliness that doesn't let me be alone
I push
    I push
        I push.
I push through
    Thoughts of death
    What will I miss?
    What will my kids miss?
    What will happen?
I push
    I push
        I push.

Yesterday 
I couldn't push through
Words like
    Resignation 
    Retirement 
    15 YEARS TOO EARLY
    Disability
They floated around me as I existed in a fog
They floated around me as I cried in anguish
Words like
    Feeding tube
    Consultation
    Surgery
    Anesthesia 
They brought upon anxiety
They brought upon uncontrollable fear.

I tried to race it away
Six miles an hour around the neighborhood 
Tears stinging my eyes 
Racing off my face
like driving raindrops through a storm
I could hear the howling coming from my body
I clinged with all my might
To whatever
To whom ever seemed safe.
Slowly
The storm began to calm
Slowly
The anxiety was replaced by a numbness
That left me devoid of feeling
A going through the motions
Letting others do for me
And move me
Sleep would bring relief
A new perspective
Tomorrow
I will push through.







Saturday, June 10, 2017

Yet another random list of random thoughts


Honeysuckle is the best smell in the whole world. Well, honeysuckle is the best natural smell in the whole world. Johnson's caramel corn on the Ocean City, NJ boardwalk is the best man-made smell.

The smell of honeysuckle brings me back to twelve year old me, walking around Roosevelt in bare feet. The asphalt would burn my feet and I would run from shadow to shadow in order to get some relief.

I went back to Roosevelt today for the 80th anniversary of the school and saw some more people who  knew me when. It's emotional to go back to where you came from. It was a beautiful event but I was more tired than expected so we didn't stay as long as I wanted or see everyone I wanted to.

I'm more tired than I was even just a week ago.

I'm physically leaning more to the right. I've noticed it in my wheelchair and more so in bed where my head is falling to the right. Time to find a propping pillow.

I overheard/semi-participated in a conversation today that went like this:
Woman 1: How are you?
Woman 2: I've just been diagnosed with (blah,blah,blah)
Woman 1: I'm so sorry.
Woman 2: At first they thought it was Lou Gehrig's disease. Thank G-d it's not that. That would be really awful.
(This woman did not know me or my diagnosis so she meant no harm but in order to make myself not break into hysterics, I told her to fuck off - in my head of course! That was for you Tina.)

My Dad took me to Sharon School this week and I saw the first graders perform in their Spring show. We went to visit old students and teacher friends. I got hugs and kisses and pictures and questions. It was so much fun. My heart is still full.

Our home is in construction mode. Two-thirds of our garage is slowly becoming an accessible bathroom.

Our home is in construction mode. Two-thirds of the stuff from our garage is spread throughout our house and yard. Patience. Patience. Patience.

I've been seeing more chipmunks lately. They are very cute.

I was in a wheelchair in my dream the other night. I believe that was the first dream I had where I was in a wheelchair. Does that mean it is finally becoming my normal? Was that a dream or a nightmare?

A woman from my online support group recently challenged others to come up with ten reasons it is good to have ALS. No, I do not accept that challenge.

There was a common theme among others who did accept the challenge that ALS opened their hearts, minds, and souls to appreciate all the moments in their lives - big and small.

I agree.


Friday, June 9, 2017

Ordinary

I recently had the opportunity to escort Gillian to an appointment she had. I say escort because I can no longer "take" people places. While I waited for her to finish up I sat by a big window which gave me fulll view of the parking lot two floors below. From my vantage point I could see into the driver side window of a car that sat a woman who I presumed was waiting for her child as well.

I watched as she did ordinary things. She reached into her purse and took out some hand lotion. The tube must have been almost empty as she struggled to get the last bit out. Finally she got enough out to be satisfied, recapped the tube, and spent a few minutes rubbing the lotion into her skin. I imagined that this was a regular routine for her as the tube was almost empty, and her hands were soft and supple.

Next she pulled out a hairbrush and spent a moment freshening up her hair. She moved the rear view mirror around so she could see herself better. She reached into her purse a third time to return the hairbrush and take out what looked like a chapstick. She shifted her body forward to get a better view in the mirror and spent what I deemed longer than necessary applying this to her lips.

After she put the chapstick away she paused for a few moments. Maybe she was thinking about the child she was waiting for or what she was going to make for dinner or the papers piling up on her desk at work. Maybe she was worried about her mother or the mole on her husband's back or the six loads of laundry that had appeared overnight. She put all that aside and pulled out a magazine and began to skim through it.

I lost interest. I put my head back and closed my eyes for a bit. I was once this woman, when I could "take" instead of escort; when I could reach for things like lotion tubes and hairbrushes and they weren't ridiculously heavy. I once worried about piles of paperwork, but now I worry about feeding tubes and handicapped accessible bathrooms.

My eyes opened with the sound of a door slamming. My new "friend" was out of her car, arms over head, stretching her body. She was wearing her work clothes - an a-line skirt, brown boots, and a peach short sleeve blouse. She leaned down to rub something from her boots. She began to slowly pace back and forth in the parking lot, reading something on her aqua blue phone. I wondered whether she was reading a text or checking Facebook or catching up on work emails.

I closed my eyes again. I didn't want to watch her anymore. I began to feel envious of this stranger and I didn't like the feelings and the tears that were starting to well up. They were not something I could afford right now. So I began to meditate, my focus starting with the big blessings in my life. And then I heard "hi mom" and my eyes opened and it was okay.

Sunday, June 4, 2017

You can pick your friends, you can pick your nose...


I can't get this weekend off of my mind. My 28th college reunion. It really wasn't even a whole weekend but a jam packed 24 hours of laughing, loving, and some crying. I laughed so hard that my face still hurts! Fabulous. I keep going back to Facebook to see pictures and comments made by my friends that I spent this emotional time with.

I know I have said this before but there is nothing - NOTHING - like spending time with people who knew you and loved you 'when'. In this scenario = when I was eighteen and scared about being away from home for the first time. When I was nineteen and doing some things I just might regret later in life. When I was twenty and I was less than self-assured but I kind of played it off. When I was twenty-one and "real" life was just around the corner. And intermixed with the four years of 'when' there were stories and memories and a comfort that is like no other.

Social media - Facebook more specifically - is really an invaluable resource for me. I was looking at some pictures from the reunion and I realized that being able to reach out through photos and comments and immeasurable support through Facebook has made me closer to some of my friends from my college years. That this venue has allowed me the opportunity to be real friends with people I "friended".

And that leads me to crying and more specifically, breakfast in the dining hall this morning. On Saturday I really didn't cry. Well maybe a little. Well maybe a lot for a short amount of time. Five minutes. I was catching up with my favorite professor and he kindly expressed sorrow for my diagnosis and the waterworks started and I just hugged him tightly. To say it might have been a bit awkward is an understatement, but it happened. But I digress. Back to breakfast in the dining hall...

This morning many of us gathered in the dining hall for breakfast. As we were finishing up, we took a group picture and started to say our goodbyes. Goodbyes are very hard for me, especially when I am expressing them to people I don't see very often. All of these thoughts run through my head. Will this be the last time I see this person? Did I tell them how much I love them? (I know I have written about this before) And then I cry. And I am an UGLY crier. And because of the ALS I can't control my crying and it all becomes a hot fuckin' mess. But even though the crying is ugly (and quite loud I might add) the emotions behind it are in a way beautiful, and more subdued, and complex.

And THAT leads me to the third line of this blog post's title...
But you can't pick your friend's nose.
I went back to the dorm we were staying in (still crying), and cried some more. As I leaned on Shawn and she stroked my hair, Linda handed me tissues. And without missing a beat, Shawn took my boogie tissues from my hand as I was done with them and threw them away. So maybe you can't pick your friend's nose, but people who love you and knew you 'when' will truly do anything for you, including taking away boogie tissues.


Friday, June 2, 2017

Update

Adam and I went back to clinic yesterday. I was dreading this visit (does anyone look forward to going to an ALS clinic?) because I knew this would be the visit at which I needed to make a decision about a feeding tube. And it was.

I am getting a feeding tube. Soon. I just need to finalize some decisions about the surgeon, and then it will be scheduled. Another hole in my stomach. I will be able to eat regular food for pleasure, but this will help me supplement my calorie intake as the physical act of eating is tiring me out. All that fork lifting, sandwich holding, and chewing can really wipe a girl out! I lost four pounds since my last visit and though that is not too bad it could be the beginning of a trend. Funny how for the past twenty years I've wanted to lose some weight, and now it is important for me to keep it on.

We got to see a sample of a feeding tube. It's kind of long. One more thing to tuck into my pants and underwear! The nutritionist showed us how you would put food in.. A little intimidating but doable. Actually I am not doing, Adam is.  I feel for him. Just another "to do" to add to his list. It's a long list. Feel bad and guilty and wishing I could take things off his plate.

As much as I was dreading this visit and the discussion and decision around the "tube", I feel okay. Right now I am in "this is how it is" phase and the prospect of this step is not as daunting as I thought it would be. I am a woman with ALS who needs to get a feeding tube in order to maintain strength, good nutrition, and quality of life so I can continue to get out and kick ass. There. Done.

In other news, my breathing level remained stable. REALLY good news. My longevity correlates with breathing levels so we are very happy about this. Also why it is a good time to do the feeding tube procedure.

We had a long conversation with my doctor about Radicava. You might have heard that the FDA expedited the approval of a new drug to slow down the progression of ALS. After a very in depth discussion, my doctor, Adam, and I decided this medication is not for me. I am not going into the details here as to why (not sure I could do the explanation justice) so you'll have to trust me on this. It's okay. I'm really at peace with this decision.

We talked about some other things like my foot drop (what a pain in the foot!), getting something tray-like to hold my iPad for when I stop talking, what I can do when food is stuck between my mouth and gums (ew!), and the possibity of using a voice magnifier (?) especially when I am on the phone. All sorts of interesting things you would never know about unless you had ALS.

Late yesterday afternoon I went to my school's end of year party / retirement party for a fabulous teacher Linda Biondi. It was wonderful to see everyone and celebrate the accomplishments of an incredible friend and educator. At the end of the evening I spent some time talking to a young teacher and new friend whose Mom has been recently diagnosed with.ALS.  It was so apparent to me how much my friend loves her Mom. I was able to answer some questions, give some advice, and hopefully be a resource for this family as I am about six months ahead of them in diagnosis. Selfishly, I must admit, it felt good to help. I don't get to do much of that lately, and if anything - ANYTHING. - good can come out of this journey, I will take it.

Please continue to live to love, and love to live. I know I will.

Wednesday, May 31, 2017

Adam's list (guest blogger)

I can do a list.....
I get a hug, if I want, every time I transfer my honey from one spot to another. 
I have gotten good with our pivot discs. 
I feel needed. It's a nice feeling. 
Deb has wanted a garden for a few years. She got one.
I put bird feeders in the back yard and we have enjoyed them. I hate squirrels.
We shower together. It's pretty awesome. 
I give Deb her pills twice a day. She is like cute little bird, if she doesn't choke on one.
I've redone our front landscaping and it's been hard work but fun. Almost done.
We take walks around the neighborhood sometimes with and sometimes without the dogs. I think I may need to start going to the bike. Deb is fast.
It's been nice having all the kids home, when they're not fighting.
Why the fuck, do the clasp things on a bra, have to be that small?!
We are lucky to live here surrounded by amazing people.
I'm still President of the pool. I don't know why.
I still enjoy coaching youth baseball. I was told over and over we would repeat last seasons allstars run. Talk is cheap. I got dissed.
I let guilt cause me to miss a new friends party yesterday. Pissed me off. I did however enjoy where I was.

Done. Not going back to edit. Fuck it.

I am

I am a toddler.

Fist grabbing
Awkward grasp
Messy eater
Toddler.

"Help me"
"Hold me"
"Don't let go"
Toddler.

Dress me
Wash me
Put me on the toilet
Toddler.


I am a woman.

Fist determined
Confident smile
Provider
Woman.

Please help me
Hold me
Don't ever let go
Woman.

Dress up
Wash up
Clean up
Woman.


I am a warrior!

Fist clenched
Confident smile
Ravenous eater
Warrior!

I will help you
I will hold you
I will never let go
Warrior!

Dress others
Wash away pain
Scour away dirt
Warrior!



Friday, May 26, 2017

So, here's how its going



Went into a restaurant today and every person already seated turned around to look at me. I am not exaggerating.
I think some people are surprised to see me out and about, but I REFUSE to become a recluse.
I am looking a little scary lately.
Doing my hair is very difficult.
It is really hard for me to wash my own hands.
I am going to be fifty in August.
I am losing the use of my mouth muscles - regularly biting the inside of my mouth as I swallow the extra saliva that I am producing for reasons that I don't understand.
I bite my tongue when I sneeze.
I am having more trouble swallowing my food.
I am eating less because I can barely hold a fork or my food.
Soon people will have to start feeding me.
Will I go out if people have to feed me? Probably.
Then people will really stare at me!
I have regrets about mistakes I have made.
However if I didn't make those mistakes I wouldn't be the person I am today.
I am still making mistakes.
Raising kids is really hard. Really. Hard.
I miss walking barefoot.
I miss being able to straighten up the house by myself.
My stomach muscles and some of my joints hurt.
Advil is not helping.
I can't talk when I cry.
I sound drunk when I talk.
I am sleeping with my arms and hands all scrunched up even though I make a conscious effort to go to sleep with them straight.
Both of my pointer fingers are gnarled.
Adam is planting a vegetable garden.
We also have a few bird feeders in our backyard.
We get blue jays, cardinals, a few different kinds of woodpeckers, and many squirrels.
Adam is getting very pissed at the squirrels.
Yesterday I saw a red-winged blackbird. It's my favorite bird.
The days are running together.




Tuesday, May 23, 2017

My Library

Yesterday I went back to my classroom. I went after school hours. I went without telling a lot of school friends I was going. I went with Sarah and my Mom and my Dad. I went to bring home some books.
I own a lot of children's books. Not just a lot, but A LOT! I started collecting them prior to becoming a teacher, which was prior to having my own kids. I just always liked the way they felt in my hands, the artistry of the illustrations, the simple yet complex messages that they conveyed. And so occasionally I would pick one up here or there - new at a bookstore or used at a yard sale. The first two I bought new were The Giving Tree and Caps For Sale. I had memories of reading them with my mother. I remember the feeling of rediscovering them in the bookstore, their covers all shiny, the words familiar like a song you had heard on the radio a hundred times. I was hooked.
I went back to my books yesterday to collect them for my children and for my future grandchildren. I want my children to be able to hold these books and remember. Remember sweet moments of snuggling in bed with hair wet from their bath and freshly washed pajamas. Remember laughing and loving. Remember me. And if they choose to have kids of their own one day, maybe these books will be the tools they use to tell stories of their own, from their childhood .
As we sat in the classroom late yesterday afternoon - in the room that was once mine but now just holds elements of me and that is the way it should be - sorting through books, piles of yes and piles of no, I was struck by how vivid the memories were. Seeing the cover of each book was like looking at a photograph, and I could see an image of reading them to my own kids or reading them to my class. I remembered where in the school year that book fit, if it was part of a lesson, or we read it to appreciate its beauty which I would call a "just because". The memories stirred up such deep emotions. And then Sarah came over with Lily's Purple Plastic Purse, with a smile on her face and a familiarity in her eyes, and I knew I had done something right if she loved this book.
I didn't take all the books. We filled up five bags. Most of the books will be donated to a new teacher or get immersed into the other first grade collections. I will go back another afternoon to sort through the rest of my teacher things - bins and bookcases, reference materials and posters. And it will be emotional and difficult.
As I was wheeling out of the classroom yesterday it was hard to believe that I wouldn't ever be back in that space as a teacher.

Saturday, May 20, 2017

Putting it all out there

In two weeks Adam and I head to Chestertown, Maryland for my colllege reunion. Twenty-eight years. We will drive the open, rural roads of the Eastern Shore that always hold the same breathtaking views. We will pass the landmarks, go over the bridges, breath in the air, feel the breezes until we drive into the town that was my second home for four very important and impressionable years. Chestertown and the campus has changed in the past twenty eight years. Rightly so. Growth of this type is important and necessary. However, when I take this drive, and I go into town, and walk the campus I am more focused on what is the same rather than what is different.
Though it as been twenty-eight years since I walked in my cap and gown, it has only been two years since I have been back to C-town. It was a weekend with glorious weather, good friends, great food and drink. One evening as the sun was setting, I sat in the boathouse with old friends, drinking ice cold white wine, eating crabs and laughing so much that my side hurt. Later on that night we trekked through the open fields adjacent to the home that friends had rented for the weekend. And with the first flash of lights and booms we stopped right there in the land that seemed to go on forever and watched the fireworks. Though I try to hold on to the glory of those moments I also remember that between the oohs and ahs and the bursts of light, I was concerned and confused as to why I was having trouble keeping up with my friends as we slugged through the fields. In true Deb fashion I chose to ignore it or chalk it up to being in my late forties.
In two weeks I will be back, catching up and making memories with many of the same old friends that I saw two years ago. Last I saw them I didn't have to worry about whether I could get my wheelchair into a building or whether a bathroom is accessible. I was able to hold a fork and reaching for a tissue didn't require effort. My voice was clear and my feet weren't swollen. And that familiar fear of losing "me" in the symptoms of the disease begins to rear its ugly head. Will these friends be able to see "me"?
I will go forth. Instead of looking at what is different I will choose to look for the things that are the same. Memories from our college days are the same. Our connections are the same. The love I have for these incredible friends is the same. And if my fear creeps up and I begin to lose my faith in "me", I will do my best to push those fears to the side and live in the moment. I will make new memories, connect maybe in different ways, and definitely continue to love deeply.

Thursday, May 18, 2017

The Dragonfly

It was late Autumn. The time of the year when you are unsure if the winter coat or the hooded sweatshirt will do. I had been teaching first grade at Sharon School for two or three years. This year I had the pleasure and honor of co-teaching part of my day with a Special Education teacher. We would share the responsibility of teaching nineteen kids that year, four who needed some extra help. One of those boys was "John". On top of needing some extra help, John was medically fragile. He also started the school year afraid of bugs. He would fixate on any bug that he would see in the classroom - a single crawling ant, a fly zipping around. They all were a distraction.
By late Autumn, the windows in the classroom were mostly shut and the presence of bugs became less of an issue. John actually began to show an interest in looking at them through the window, especially when they got stuck between the screen and the glass. He seemed to be getting over his fear. That is what was on my mind one morning as I stepped out of my house with my son on our way to school. There, on my welcome mat lay a dragonfly. It had beautiful iridescent purple wings and a body that stretched at least four inches. As my son and I admired it, it lay perfectly still. Ean gave it a little poke with his shoe, and still no movement. We agreed that it had died now that the weather had turned cold. I went inside and got a clear plastic container. If John was able to look through the windows at bugs, maybe he would be ready to see one in a sealed container. Ean and I cautiously picked up the dragonfly - still no movement - dropped it into the container, sealed it up, and went off to school.
That morning started just like all other mornings with my kids. As they came into the classroom my colleague and I greeted each one, and listened to them chatter with us and each other about events that happened either that morning or the night before. They unpacked their backpacks, and right after the Pledge of Allegiance everyone settled on the carpet for Morning Meeting. I casually pulled John aside and told him what I was going to share with the class. He seemed comfortable and curious, however I did tell him that during our share if he wanted to leave the circle he was more than welcome. My colleague and I were both pleasantly surprised at John's reaction to this activity. It was a big step for him to face some of his fears.
After we greeted around the circle, I explained to the kids what my son and I had found that morning. John was happy that he had a heads up to the story and told his friends that the dragonfly was dead. As we passed the sealed container we discussed why the dragonfly might have died, what they eat, and a myriad of other questions and "supposes". I could see that the kids were having a bit of trouble seeing the dragonfly as some condensation built up in the container. One girl suggested we take the lid off so we could see better. I looked at John and he seemed apprehensive. I agreed to that idea but I told the group if they felt scared at any point, they could say "no thank you" to looking at the dragonfly and/or step away. Everyone agreed. John smiled.
I opened the container and handed it to the boy seated three kids to the right of John.
And that is when time stood still.
As the boy peered inside the container I could see the dragonfly wings start to vibrate. I looked at my colleague, we both looked at John, and before I had the chance to lean forward and grab the container, the dragonfly began to fly. It flew out of the container, three kids to its left and landed on John's arm.
John screamed, the boy who was holding the container screamed - actually all the kids screamed. All nineteen kids went running in different directions, and in the midst of the chaos, the dragonfly flew out the classroom door.
It took about ten minutes to get everyone settled again. There were tears, some laughter, and a lot of disbelief. My colleague took John to the nurse's office to calm down and get checked out. We began talking about what happened and the kids became worried about the dragonfly. So we set out into the hallway with our container, the lid, and some new guidelines. We were going to try to catch the dragonfly in order to release it outside. It was scared and screaming at it would scare it more. Plus screaming in the hallway would definitely disturb the other learners in our school. We practiced holding our hands over our mouths to keep the screams in. By the time we got lined up, and silently into the hallway, John had rejoined our group. He eagerly went to the end of the line in order to have limited participation in catching the dragonfly. Luckily our insect friend was sitting on a piece of artwork just outside our door. Very quietly and carefully I was able to coax the dragonfly into the container, and of course I shut the lid - tightly.
After some whispered discussion, we decided to release our dragonfly onto the playground. We went outside and sat in a big circle, similar to what we had done for Morning Meeting only a few minutes earlier. This time I placed the container in the middle of the circle, took off the lid, and joined my kids and my colleague on the grass. We waited. We watched. And then, slowly as if we were regaining its trust, the dragonfly lifted itself up, and flew away.
We were quiet for a moment. I instinctively knew that the math lesson that I had so meticulously planned for that day was just going to have to wait. We trudged back to our classroom and wrote a story about the time a dragonfly got loose in our classroom. John volunteered the first sentence. "One time Mrs. Dauer brought a dead dragonfly to school to share with us."...



Wednesday, May 17, 2017

Perspective

I am enjoying the Spring. Things look different this Spring than last. Though I was home last Spring as well, most of my "free" time was spent on the toilet, or figuring out when I could eat, in order to then have the time to be sick, and then hopefully be able to go out. By this time last Spring my UC was in full flare, I was wearing my mofo/brace Phoebe, and I still didn't know I had ALS. I am pretty sure my colectomy had already been scheduled.
Fast forward to this Spring. I no longer have a colon, but I have no pain. I still worry about using the toilet but only because I can't get on and off myself, and all toilets are NOT created equal. Phoebe has been replaced by a hot pink power wheelchair who still remains to be unnamed. I am anticipating the scheduling of a feeding tube insertion. And the big one - now I have ALS.
I often think about how each experience I have is beautiful in its own way if only I didn't have ALS. Today is a perfect example. Kim (my home health aide and friend) came over this morning. We prepared one of my family's favorite meals (I supervised)),  she shaved my legs, we talked and laughed, she made me lunch, and I ate while she folded clean towels. What a great morning if only I didn''t have ALS.  Or when I get this gift of free time to write and think and meditate. All of that would never be if I didn't have ALS. And as I reread this paragraph I just wrote I realize that I am not sure if I am angry or thankful for the ALS. What is my perspective? I know that ALS has caused me to love more and harder, never take things for granted, and stop sweating the small stuff. I have met some amazing people because of ALS. So, in some twisted and bizzare way am I happy I am living with ALS? No.  Definitely not. But I guess perspective is not black or white.
Now that the weather is a bit more cooperative, I am often sitting my backyard on the deck. I tilt my wheelchair back to be able to see the very tops of the trees.  The tall, strong limbs touching the blue sky. The breeze just strong enough to make the leaves move and turn so you can see multi shades of green. It is peaceful and majestic. If my wheelchair had been in its regular seated position I would never have seen such beauty.
Last night I had the privilege of attending the Lawrence High School's Spring instrumental concert.  Greeting friends after the show, sitting in my wheelchair in the regularly seated position is awkward and it hurts my neck. I am really only seeing their midsection and it is not conducive to hugging.So I tilted my wheelchair back and changed my perspective. I got to see smiles instead of belly buttons, my neck didn't hurt, and the hugs were greatt!


Sunday, May 14, 2017

A "hokey" non-poem / my voice

I am not sure what I expected.
Maybe that I would be different than the others.
Or I would have more time.
I am not sure I actually thought about it clearly or consciously.
But last night...
this whole losing my voice thing
hit me like a brick.

I still have a voice.
It is weak and strained
but still audible.
It is slurred and high pitched
but still understandable.
But it is leaving me
just like my legs
and my arms
and my stomach muscles.
I can't feel the twitches
as I did in my limbs
as the muscles waste away.
But I can measure the length of time I can talk
before I get tired.
I prepared with
voice-banking
and app downloading
but I guess I didn't really "prepare".
So when I needed my voice last night
it failed me
and I grieved.

Today napping
in my chair
leaning back
facing the sun.
The rain came suddenly.
Big, cold drops on my face
It took me by surprise
as Adam came running
to help me get inside.
Then it stopped.
And we went out front
to try to catch a rainbow
and I wheeled through warm puddles
just like I used to stomp.
It made me feel young
and I laughed watching my boy
take pictures of his crazy mama.
The gray clouds were pushed aside
by clear blue skies.
The steam rising from the earth
brought worms
and the smell of earth and Spring.
It didn't bring my voice back
or strengthen my limbs.
It brought me a bit of happiness
and hope
and helped me remember that
I am still me.

Thursday, May 11, 2017

I'm Rambling On

I can still clean my own ears with a Q-tip. I can barely hold a fork, can no longer print my name, and typing takes me hours longer than it used to - but cleaning the ears I can still do. For some reason, the powers that be have decided that cleaning my ears is what I should be left to do, so damn-it I will do it! I clean my ears every morning. I have the cleanest ears this side of the Mason Dixon line!

I'm not alone in the house very often, but sometimes when I am I pull Jackson up on my lap and we go riding around the circle in my house. Through the living room, into the dining room, through the kitchen and around again. Sometimes I sing along to my Alexa playing country music. Sometimes I talk to Jackson, and he looks back at me with understanding. Sometimes I just ride around quietly thinking about a new blog post I want to write, or where my first graders would be right now, or what I can still do to help around the house (not much). I often laugh at the thought of my kids or Adam walking in at that moment and what they would think of me.

I had a dream last night about falling. I haven't dreamt about falling in a very long time. In my dream we had to call the EMTs to get me up. I wonder why that came to me last night. It is no longer a significant fear.  Adam and I use this pivot disc to turn and transfer me into my reclining chair, or my wheelchair, or the toilet. We fondly refer to it as the "lazy debbie disc". It is a very secure process. My parents have a hard time using it so they got me a Beezee board (I think that is what it is called). It is just another way to transfer mostly immobile people. And then there is the Hoyer lift, which we have standing in our living room, calling out to me "one day you won't be able to move at all". I won't describe it here. Trust me when I say it is obnoxious and ominous.

My voice is so child like. Not just my pitch and the fact that the words come out at the speed of molasses, but also what I am now choosing to say. When I speak like an adult, in longer, more complicated sentences, I get winded. Well, sort of. It's kind of like losing my breath, but more about my mouth/tongue muscles get tired. So I am trying to keep it short - short sentences, one or two word answers. But I really like to talk, so keeping it short is not easy for me. There are also some words that are easier to say than others. For example, it is easier to say "yeah" than "yes". And I am noticing that some people are losing patience with pacing, or how slow I am speaking, so I have had to say "please let me finish". I don't know if I am paranoid or this is real, but as my voice becomes more child like it seems that strangers are speaking to me like I have a mental disability or a delay. But in reality everyone should be spoken to the same way - with respect.

I am getting out a lot. Kim is my home health aide, but also my friend. She comes a few times a week, and even when she is here we try to go for a stroll around the neighborhood. She is very encouraging - encouraging me to keep going out, and to not be afraid. So I have been going out. This week we went to the State of Robbinsville dinner, where our family was the recipient of the Pay It Forward initiative. The dinner was lovely and I wore a dress and Lisa did my make up. I felt like the old me. And because of the dinner a bunch of old friends were in town. So we went out, and reminisced and laughed about the silly things we did when we were young and naive. And this time when David left to go home to Paris, Lisa left to go home to Florida, and Sander left to go home to California I didn't cry. I am pretty sure I will see them again. And if I don't it is okay because I hold them in my heart, and they know that I love them. Damn - now I am crying.



Wednesday, May 10, 2017

Speech from the State of Robbinsville / Pay It Forward dinner


Home. Growing up my home was Roosevelt, a town of two square miles just east of here. Us Rooseveltians say if you drive through and blink you will miss it.


Home. When Adam and I married we settled in Lawrenceville, a house on Princeton Pike where we continue to raise our children, volunteer in our community, and have developed loving and deep friendships.


Home. Ten years ago, early in August, then assistant principal Janet Sinkewicz walked me into room b4 of Sharon School. The walls were bare and unpainted, the carpet desperately needed to be cleaned yet I was ecstatic because I knew I was home.


Home. Teaching hundreds of kids. How to read, how to add and subtract, how to ask questions, the importance of being kind. The pride and love you feel for these kids makes your heart swell and catches your breath.


Home. Sticky first grade hands reaching for yours. High fives in the halls. Waist high hugs in September turn into chest high hugs by June. Wiping tears, tying shoes, kneeling down for deep conversations, belly laughing.


Home. Reassuring parents that their kids will read, learn, write, make friends. Teaching the siblings - sometimes three or four! Feeling like you have become one of the family. Getting invited to birthday parties, communions, bnei mitzvahs, baseball games.


Home. Your co-workers become family - your soul family. Teachers and administrators, administrative assistants and custodians. The pride and love you feel for these people makes your heart swell and catches your breath. Celebrating together. Sometimes mourning together.


Home. You develop a debilitating disease. You get a diagnosis that rocks you and your family to its core. And you wonder how you will make it - through the year, month, week, and even the next day. And the soul family holds you up.


Home. Flowers and loving notes from past students. First grade drawings of me in hot pink wheelchairs. Notes from past parents. Visits from entire families that you have taught.


Home. Your soul family and the community you have become a part of reaches out in immeasurable ways. You get notes, and prayers and love. They let you cry and hold your hand.


Home. Robbinsville. There are fundraisers and donations. There is this reassurance that I am a part of this community and I will be taken care of. I am home.


Thank you to the entire community of Robbinsville. A special shout out to fellow Hightstown high school alum and Robbinsville mayor David Fried; Jodi Stephens, Joy Tozzi (pron Tazzi), Dino Colarocco, and Roger Fort. From Robbinsville schools - Janet Sinkewicz, Nicole Bootier, Kathie Foster, Steve Mayer (may his memory be a blessing), and my beasties.

I would never wish ALS on anyone. However, I hope you all have the experience of feeling the love that I have felt here in Robbinsville. For that I am truly blessed. Thank you.

Tuesday, May 2, 2017

Benjamin Button

I take comfort from knowing the exact age of this tree.


It was late fall. Sarah was barely a year old. We were toddling through our front yard one day and under the crunchy brown leaves we found a maple tree sapling. It was standing straight and as tall as it could under the weight of the propeller seed pods still attached to its stem. We dug it up, careful to get all the roots, and replanted it in the "just right" space in our backyard. We nurtured it and watered it and from then on it became the Sarah tree.

At first we measured the growth of Sarah against that of the tree. Sarah was taller than the tree for a few years, yet both stretching upward and growing strong. But trees grow differently than children. I was focused on the growth of three children by the time I noticed the size of the Sarah tree. It was healthy, with a thick trunk. In the summer, with its full bouquet of bright green leaves, it would provide shade for the kids as they played on the swing set.

Now the Sarah tree is eighteen years old. It doesn't visually stick out as something unique in our backyard. It blends in with the other trees - some of which Adam planted, some of which were provided to us by the wind. I was telling someone about the Sarah tree recently and I said I thought its height was about fifteen feet. Adam clarified and said it was closer to thirty. When I got home I leaned my wheelchair all the way back and tried to see the top of the tree. I couldn't.

The changes in the Sarah tree seemed to happen so quickly. I am trying to take notice of how and when things change. The seasons, the trees, the flowers, and my kids. I take notice of the changes in my body so I can be one step ahead of ALS.

In speaking to a fellow PALS online, they suggested I watch the movie The Curious Incident of Benjamin Button (originally a short story by F. Scott Fitzgerald). They said it gave them a different perspective on growth, change, and what it means to progressively "grow" with ALS. I watched Benjamin age in reverse, and go from an old man to an infant. I watched as the knowledge of this affliction had an impact on the choices he made for himself and others. I was intrigued by his unwillingness to be a burden to those as he grew "younger". There was a scene where the scales were even and Benjamin held the knowledge of a fully grown man but his body was becoming that of a young boy. There was nothing he could do about this reverse growth. This rings true for me. ALS is reversing my body - I struggle with things like feeding myself, dressing, self care - those things that a parent would do for a toddler. My voice has become high pitched and slow. I will only regress more. Yet my mind continues to be that of a full grown woman.

The Sarah tree will continue to grow. My kids will mature and flourish. The seasons will change, the flowers will bloom, and maybe the wind will bring us new growth. I will manage the Benjamin Button within me. Some of it I will notice. Some changes will happen so quickly that it will take me by surprise. Change and growth  - in either direction - will just happen.

Wednesday, April 26, 2017

Pain and Change

It is amazing to me how pain can completely alter your body, mind, and soul.

I had pain since Friday on my right side under my ribs which radiated up my neck. I was in the hospital for two nights / two days for what I now know to be a pulmonary embolism caused by a combination of being on birth control pills and my forced sedentary lifestyle. The pain was debilitating, causing me to be (?) or feel (?) more disabled than I am.

I was hooked up to heart monitors and oxygen and IVs. There were wires everywhere. The nurses and others had to empty my ostomy bag and put me on the bedside commode. People I didn't know had to wash me. Marian took control of my care. My father fed me.

My kids saw the pain in my eyes and it scared them; and I saw the fear in their eyes.

Some of the pain medications worked. Some of them didn't. Some made me sleep on and off for hours and made it impossible for me to open my eyes. I kept thinking about how I have a limited amount of time left on this earth and I don't want to spend it in the hospital and in pain. The pain made me cry and want to give up.

And now I am home. The pain is being managed well. I am on a medication for the pulmonary embolism, and with time that will go away. And with that so will the pain. I feel (?) or am (?) less disabled than I was in the hospital. My hands still feel extra stiff and my fingers are still more gnarled. Adam and I jumped back into our regular routine with some small changes. We took a shower and washed off all the hospital grime, the sticky tape residue, and cut off the bracelets. I fed myself. I hugged Gillian and Ean. I anxiously await Sarah's return home for the summer. I once again have plans and life's little gifts to look forward to.

This whole experience was not unfamiliar or new to me. I had lived with pain from my UC on and off for thirty years. Some of it far exceeded the pain I felt from this experience. I had my colon removed in June. I had been in the hospital many times before. This experience held much more of an impact. It had bigger implications. Whereas I knew the end result of UC hospital visits, I didn't know how this one would end. Whether it was realistic or not, my mind was beginning to prepare for the worst, and that was scary.

While in the hospital I had to tell MANY people about my ALS. "I can't move over to the table. I have ALS." "Please place the pills in my mouth. My hands don't work right. I have ALS." Most were quite courteous and asked questions and wanted to learn. "What is the best way for you to do this?" Those who were more familiar with the disease showed a different level of compassion. "When were you diagnosed?" "Has your disease plateaued?" "I'm sorry that you are going through this..."

I am not sure what this post is "about". I just know that like with every other part of my ALS journey, this experience has also changed me.

Sunday, April 23, 2017

"Today I feel like a sick person"



NOW I am a sick person.

Before I was 
weak
scared
disabled
unable
vulnerable
confused
questioning
informed
strong
anxious
concerned
fearful
careful
grateful
appreciative
...

But I didn't feel like
"a sick person"

Now I have pain
and discomfort
and tears
and fleeting thoughts
       of giving in

I have all of it
the before
and the now
"stay strong"
I am
Am I?

I am a sick person
who is strong
and weak
who is positive
and fearful
who is disabled
and able

Thursday, April 20, 2017

Blessings

I recently wrote to a friend:
The awfulness of having ALS is obvious and apparent. The blessings are a little harder to reveal.

Blessings? ALS? How could I ever see blessings in a disease that is slowly taking me away from everything and all that I love?! Have I lost my mind?! (That is rhetorical) I guess the disease itself is not a blessing, but the awareness it has brought to my life most definitely is. What I told my dear friend is I am aware of how people feel about me and I tell people how I feel about them with a open heart. How lucky am I to be able to hold nothing back! If I feel love, I express love.

I laugh more. I used to laugh because I have always been surrounded by funny people who do and say funny things. But now I laugh with wild abandon - at the silliest things. Some things throw me into fits of laughter that last way beyond what is deemed appropriate, but I don't care. I laugh, and laugh, and laugh and my laughter makes other people laugh.

I cry more. Could this really be a blesssing? I think it is. It is a true expression of my feelings at that moment, and what could be wrong with that. Crying is also very cathartic and cleansing and I always find myself feeling more focused and at peace after a good cry.

I have seen compassion in my children that I would never have seen. I am not saying compassion wasn't already there, but having a mother who can no longer "do" has brought out something unique and almost spiritual in my children.

My relationship with Adam has been challenged and continues to be challenged but we continue to overcome. I love him with more sincerity and passion than I ever have. We find humor in the everyday and often in things that most would not find humorous. We are living our lives as partners, husband and wife, best of friends, and try to make the most of every day.

I have learned to slow down and "stop and smell the roses". Really out of necessity because I am slower than a sloth. I see more, smell more, notice more than I ever have. I do not allow those things that irritate me take up space in my life.

My parents and I have had the opportunity to spend time together that maybe we wouldn't have had. I enjoy their company, appreciate their help, and am learning to let go of the guilt I feel that they aren't able to take advantage of their retirement as originally planned.

I am writing. I haven't written this much since the seventh grade, when my writing journal was filled with bad poems of teenage angst. I am sure that the writing has come purely from illness and time and my unconditional need to connect to others.

I feel like my friendships are stronger. I have made many new relationships with a whole variety of people that I would never had met. Through in-person and on-line support groups, through our village in Lawrenceville and Robbinsville, and through this blog. Each one of these relationships is a blessing and has grown to be important and valued in a way that is difficult for me to describe and understand.

I will be perfectly honest and perhaps a little brash - if I had the opportunity to trade all of these blessings for a life without ALS, I would in a heartbeat. However that is not a choice I have. So I'll take these blessings and live my life to the fullest.

Live to love. Love to live.


Tuesday, April 18, 2017

Leanings

I am leaning to the right. Not politically of course! Politically I lean to the left. Physically I lean to the right. My right leg is occasionally slipping of the foot plate, and I find that my head never feels centered in my head rest (The fact that my head never feels centered could be something else entirely, but all of that is a matter of opinion). My right side has less strength so it probably has more trouble holding my weight. It's annoying because I am always trying to adjust my body and it never feels quite right.
I had a dream a few nights back that feels connected to this "leaning right". I was in a large Hallmark store with my friend Lisa. The line was really long and they opened up another register to our right. We walked over, but as soon as we got there the line became long again with us at the end. It was happening over and over again; the line opened on the right and we were at the end. Finally a line opened on the left and we were the second in line. In front of us was my previous student Alexa and her Mom, Robin. Alexa hugged me big and I could see her face as she hugged me and she had this huge smile on her face and her eyes closed.
I don't know what this dream means. I'm not much into analyzing my dreams. I do know how they make me feel, and this one made me feel loved and connected. I am never in my wheelchair in my dreams - even in the upsetting ones. I think that means I am not really supposed to be here. But again, I don't really want to analyze my dreams. Well, maybe just a little...
After I had that dream, I began thinking about Alexa and many of the other students I have taught over the past ten years. Then I began thinking where I would be right now in the school year. We are about a week away from Earth Day. During the month of April the kids were invited to bring in boxes that they were going to recycle - cereal boxes, boxes from bars of soap, snack boxes, etc. We collected the boxes in large black garbage bags and by the time Earth Day rolled around we had at least three garbage bags full of boxes of all shapes and sizes. On Earth Day we would read a book called Christina Katerina and the Box. It is about how a girl uses her imagination to create and then recreate things from her mother's refrigerator box. We would then all pick a box and create. Some kids had trouble with this, like they needed a set of instructions similar to what would come with a Lego set. With some encouragement, and the repetition of me stating "yes, you really can create whatever you want!", they would get there. Pretty soon the room would be full of castles and race cars, robots and space stations, dollhouses and airplanes. They would jump at the chance to add another box to their creation, or use the scraps from the scrap box to add color and pizzazz! Inevitably when the period was over and it was time for them to stop for the day, there would be moaning and cries of disappointment that they didn't have enough time. So we would put our creations on the window sill, Elmer glue dripping down the sides, colored paper hanging from loosely set pieces of clear tape, and we would find time to finish them the next day.  On rainy, indoor recess days the extra boxes would serve as building blocks, the students working together to reach a creative goal.
I miss having connections with kids every day, especially first graders. They are curious and inquisitive and so very entertaining. I miss how I would know them so well by April that I could tell who would need extra encouragement creating something from a box, and who would be able to take off and delve right in. I miss the building of relationships with kids and their families. I miss Morning Meeting and being let into important pieces of their lives as they would "share". I know that I am still teaching in a different way, but there are very few things that are as gratifying to me as teaching a young child. This is how I lean.

Sunday, April 16, 2017

Observations over the past few days

1.  For those who have been reading this blog pretty regularly, it might be apparent that one of the things I am most afraid of while living with ALS is losing who I am. That I will become the disease and no longer be me. While at support group this Saturday I met someone new, "Jack". Jack's ALS is further along than mine (honestly I don't know if that is the way to say it - more progressed?).  His voice is very quiet and he is difficult to understand. His body is still. However upon meeting Jack his personality shines through. He has a good sense of humor, and was pretty quick with a joke. He participated in our conversation on his own and with the help of his family. When I made a joke he laughed. Meeting Jack was a delight, and reassuring to me that one does not have to be lost in this disease.
2. I roll around my neighborhood pretty regularly now that the weather is beautiful. I often see this one family out on their driveway, or the sidewalk in front of their house, or their front lawn - a mom, a young girl, and her younger brother. Today the little one was attempting to ride his bike - probably for the first time - with his training wheels on, as his not-much-older sister was coaching him along. I rolled past and I could hear "one foot goes down and the other goes up" and "you can do this." Witnessing this moment of encouragement made my heart warm, brought a lump to my throat, and tears to my eyes.
3. The most peculiar things make me cry (see above). Discussing B12 shots with my doctor, seeing a dish in Wegmans that looked very similar to Grandma Bea's chopped liver dish (which I broke and will never forgive myself), and when people show me kindness.  I had the pleasure of bumping into my friend Nancy's parents and sister today. They stopped what they were doing to greet me with hugs and kisses and smiles all around. They are such lovely people and as I rolled away, I started to cry. Why would this small exchange make me so emotional?! Is it because I feel things more deeply, or I recognize the importance of small, kind gestures? Or maybe I am losing my mind?! (all of these questions are really rhetorical).
4.  Shout out to the Lawrence-Hopewell Trail! http://lhtrail.org/  Today Adam and I took the van to the parking lot at the Pole Farm and spent a good hour or more walking/rolling the completely power wheelchair accessible trail (note: the ground was very dry and I am not sure how the pwc would do in the mud). It was beautiful and energizing and so wonderful to not have to worry about whether or not I would be able to get my wheelchair through. The woods on the side of the trail brought me back to the woods I used to trek through during my childhood. The views across the fields were breathtaking. I am thrilled that Adam and I have found another outside activity that we can do together!



It was a little windy!


5.  Everyone handles grief differently. I overheard one end of a phone conversation in the mall a few weeks back. The woman on my end was expressing her disbelief that her cousin was still crying over the loss of her grandmother. After all it had been over a year. I wanted to shake her and say you do not have the right to put a time limit on someone's grief! I am seeing all different types and levels of grief as I meet more people with ALS. Some people are able to take that grief and turn it into something positive - advocacy, raising money for the cause. Some people wallow in the loss of what could have been and can not and/or choose not to move past that. All you can do is meet people where they are.

Friday, April 14, 2017

Yesterday...

My brain is "abuzz", "confused", "befuddled" with all that I am feeling now. On one hand the clinic visit yesterday was productive and I got information that will help me move forward in this journey. (It's kind of ironic that I call it a journey as I feel the longer I live with this disease the less I am moving) I met with Dr. Elman, the speech and language therapist, the nutritionist, the PT, and the OT. Mary, the nurse practitioner who manages everything, measured my breathing which went down considerably in the upright position and basically remained the same while laying down. I will start using a bipap machine - it basically does the work of breathing muscles - at night to give my breathing muscles a rest. Hopefully I will sleep more soundly and during the day my breathing muscles won't be so tired.
I turned down the offer of a hospital bed. It represents too many difficult things in my head. Adam and I are looking into an adjustable bed for upstairs instead. We are getting some home care PT to teach us how to transition from one location to another now that my legs are much weaker and much less cooperative. The PT gave us a gait belt so Adam can move me without killing his back. Mary is also going to try to order us a Hoyer lift.
In my mind the big conversation revolved around the feeding tube. Now that I am starting to have some difficulty swallowing, I am going to try to eat foods that are softer and smoother - smoothies, yogurt, etc. - in order to alleviate choking risk. They want to do the procedure in awake anesthesia, not on a ventilator, so my breathing muscles need to be strong enough to handle that.  Just because the feeding tube is in doesn't mean I have to use it all the time. Going back to clinic in two months to reevaluate. I predict the feeding tube will be in this summer.
There were lots of other conversations that revolved around hardware for my ipad attachment, stretching, eyegaze, and much more. All productive and informative. And I walked away from this appointment feeling pretty good and mostly positive. And then...I start to think. I start to think about the implications of feeding tubes and bipap machines, of talking technology and Hoyer lifts, and it all becomes too much to bear. So last night I cried (wept is more accurate) for the things that I will miss or never see, the moments that might happen without me. I cried for my beautiful children, and my devoted husband. I cried for my parents and brother and all those who love and care about me. And then I just sat and breathed.
One year ago yesterday I began writing this blog. This post is the 100th piece I have written. I went back yesterday to reread the first blog post, to see where I was physically and emotionally, to reflect how far I have come on this journey. My first post was questioning whether or not I was disabled. And though now I definitively am, this is what struck me about what I wrote:

... I am able to love my kids.  I am able to love my husband.  I am able to be over the top appreciative of the love and support my family, friends, and community are showing me. ...I am able to love on my dogs.  I am able to occasionally go places with my friends.  I am able to help my kids with big decisions and little ones.
So I am able.  Some days I am more able than others, but isn't everyone like that?  


1

Tuesday, April 11, 2017

NOT off the beaten path

A few weeks back a woman was driving down our street, reading something on her cell phone, and then proceeded to crash into our parked car and run over our mailbox. Thank G-d no one was hurt. We lost a car and a mailbox and in the grand scheme of life, these things do not matter. However, as this fabulous Spring weather is upon us I realize that we lost something else that day - our clematis. Over the years Adam had nurtured our clematis plant (vine? bush?) around our mailbox. Every Spring it would bloom with majestic purple flowers bigger than your hand. It was gorgeous! When this woman carelessly ran down our mailbox, she took most of the clematis down, leaving just a few strands of vine. Some people might be thinking, it will grow back or it is merely a plant. And they are right - it will grow back and it is only a plant. However, growth takes time. And time is a precious commodity. It took years for this beautiful plant to grow and it had become a symbol of Spring, warmer days, and positive change for our family.
This realization of simple loss was bumming me out. I decided I needed to do something about it so I went for a roll around the neighborhood. When I was more able I might have taken a walk off the beaten path, through the woods that run next to the creek. I remember walking with kids and dogs, neighbors and friends. We walked these woods through rain and mud, seeing deer, turtles, and listening to the trickling water. But now that I am rolling instead of strolling, I made a choice to find the beautiful symbols of Spring that were right in front of me, on the side of the road, NOT off the beaten path.
Beauty I did see...








The scents, the sun, the breeze, the buzzing of the bees all as Spring brings things back to life! All of this just from my pwc as I roll around my neighborhood.
I will miss the grandeur of the mailbox clematis. It was important to me. Who knows - maybe I will get the time to see it in full bloom again. In the meantime I will find other ways to regal in the beauty of Spring.

Monday, April 10, 2017

From temporary to permanent

I have been dreading this day for over six months. Today was the day we got the blue handicapped placard for our van. Blue is the color of the permanent placard. The temporary one that expired at the end of March was maroon. It said temporary at the top, and seeing it there gave me this hope (albeit false hope) that I was to get better and I wouldn't need it anymore. Sigh.

But there it hangs, the blue placard with permanent at the top, taunting me. "Ha! No chance now!" Since I have a tendency to name everything - Phoebe, Consuela - I am going to name the placard "Bitch". I am sure Bitch and I will have a tenacious relationship at best.
On a completely different note, we spent the weekend getting ready for Passover. "We" isn't quite accurate. My Mom came here and made chicken soup and matzoh balls. I supervised.

Gillian made charoset. I supervised.

Adam moved furniture and, yes, I supervised. Kathleen, Marian, and Gillian set the table and I supervised. All the rest of the cooking took place outside of our home, all made with love and I am sure delicious. Now people are here getting ready for Seder and I am sort of supervising. It is surely a strange feeling watching something you have always done a great portion of, going on around you without the ability to do anymore. Last year I was able to do some of the Seder prep with the hope that this year I would be able to do it all again. But life took a turn, and we went from temporary to permanent.