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.