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.


Thursday, April 6, 2017

lists of life in no particular order

"Alexa, play ocean sounds."
"Ocean sounds by ocean sounds."

Phoebe
no more Phoebe
walker upstairs
walker downstairs
no more walkers

borrowed pink manual wheelchair
borrowed red manual wheelchair
PWC - hot pink with cup holder
van with ramp
EZ lock

moved dining room table
moved dining room chairs
moved kitchen table
moved one kitchen chair

recliner
dining room chair for my feet
little purple blanket
big blue blanket from our beach supplies
wonder woman blanket
plant stand / little table

vitamin C drops
extra toothbrush
rubber mat
grab bar, grab bar, grab bar...

clumps of dried mud
bags of pills
dings in walls
dings in molding
dings in kitchen cabinets
ramp, ramp

stair glide
pulled up carpet
bigger bathroom
roll in shower
shower wheelchair

moved bed
switched sides
bed bar
pivot disc
    aka "lazy debbie disc"

electric toothbrushes
extra pillows
little pillow
on my back
help turning to my side
help turning to my other side

pill box
neck pillow
funny socks
sweatpants
yoga pants
ponchos

awkward conversations
what happened?
what's wrong?
will you get better?
no
change the subject

boxes of cards
boxes of notes
boxes of love
pictures
supportive texts
visits
huge favors never to be reciprocated

toilevator
lift seat
no lift seat
help getting to bathroom
help getting onto toilet
help with pants down
help with pants up

food cut up
paper cups
fork that bends with larger handle
fork that bends with larger handle now too heavy
little fork
paper plates
paper bowls

hard to text
touch too soft
touch too hard
turns to calls
methodical talking
hard to talk
voice recognition
voice recognition hysterical mishaps

"Alexa, table lamps off."
"I'm sorry, I don't have tag lights in your devices."

"Alexa, TABLE. LAMPS. OFF."
"Ok."
Lights out.





Tuesday, April 4, 2017

"Life doesn't come with an instruction booklet"

"Life doesn't come with an instruction booklet" stated a very wise woman on one of the online ALS support groups I belong to. She is a CALS and works very hard every day to care for her husband who lives with this awful disease. This woman writes eloquently and I always have a take away from what she writes.
There is no right way or wrong way to care for someone with ALS or live with ALS or even love someone with ALS.  We all just mosey along in the best way we know how, and try to share with each other different solutions to the different problems that pop up - a different one almost every day. The most interesting solution was something I came across a few weeks ago as I was trying to figure out how to sleep with my gnarled pointer finger in a straightened position. A PALS suggested that one should sleep with an empty movie candy box on your hand. It forces your fingers to lay straight AND you get to eat the candy first! Genius! If I were ever to write a "How to do LIFE" instruction book that would definitely make the cut.
I recently had the opportunity to drive through Perrineville, New Jersey. Perrineville neighbors Roosevelt, where I grew up. I spent a considerable amount of time there as my friend Lisa's grandparents (both sets) lived there. Predominantly rural, open space and farm land when I was a child, it is now a bit more suburban. As my parents and I drove down a familiar road, I commented that this road remained unchanged. My father responded that "no, the abandoned house finally fell". I looked to my right and there lay the remains of what was once an old, wooden home. It took my breath away as I remember driving by this empty, broken down structure almost every weekend, each time wishing I could go inside and explore.
I felt that way about every deserted and discarded home or store or structure that I would see. I envisioned walking in and finding treasures under years of dust. Old dolls, and broken tea cups. Rusted tools and expired cans of food in cabinets with doors hanging from just one hinge. I am not sure why I thought the previous occupants of such homes would leave their belongings there. Maybe they had to escape the mafia or they were run out of town by the sheriff! Whatever the reason I would romanticize the items left in these forgotten homes.
I remember one time Lisa and I venturing into the broken down chicken coops on Grandma Jackie's farm. We didn't get very far before Lisa's Uncle Lonnie found us and threatened to tell. I remember the excitement I felt when I discovered that the abandoned tiny house sitting on the edge of a property in Etra (on the way to Hightstown) was part of Andy's family property. I met Andy in high school, but I had spent most of my elementary school years wondering about the contents of that tiny house, which in my young mind was occupied by tiny people or fairies who only came out at night. They ate on doll size plates and wore the leftover Barbie clothes thrown away by the people living in the big farmhouse behind it. I thought now that I knew Andy I would finally be able to look inside the small vacated home. I never got the nerve to ask.
Chapter two of my imaginary "How to do LIFE" book would be Don't be afraid to explore. Chapter three - Have the nerve to ask.
Now that I live in this uncooperative body and a power wheelchair, I recognize that I will never see what is inside these abandoned structures. The dolls and tea cups will remain under the decades of dust, as well as piles of termite infested wood now that the home has fallen. The secrets of the tiny nocturnal people in the plastic Barbie heels will remain undiscovered. They will continue to live in my childhood, in my mind, and in my imagination.

Sunday, April 2, 2017

The one that was very hard to write

Yesterday I was blessed and honored to attend and celebrate Jacob becoming a Bar Mitzvah. Jacob is Abby's son, one of my oldest and dearest friends. It was a beautiful day and Jacob did an exceptional job reading from the Torah, reading his Haftorah, and giving a speech with poise and a bit of humor. I honestly didn't know Jacob very well but I felt like I knew more about him after witnessing such an important event. I like him very much.
I decided that I was going to just "take in" the time at temple. No following along in the burgundy prayer book. No taking out the blue book when it was time to read the Torah. I simply let the prayers wash over me. I listened to the familiar tunes and watched the familiar routines of taking out the Torah and parading it around the temple. The temple was more in line to the traditions of the temple of my childhood and there was comfort in that. All the men wearing yarmulkes. Some praying with tzis-tzis. their tallit draped over their heads. The Rabbi spoke about his upcoming trip to Israel where he will witness his own son becoming a Bar Mitzvah at the Western Wall, his voice cracking with the emotional impact of such a journey.
It was wonderful to see the joy and pride in Abby's face. I loved what she and her husband Adam shared about Jacob in their speeches. It brought back sweet memories of my own children's B'nei Mitzvah which were a few years back but seemed like yesterday. I remember that feeling of sharing your pride in your child with friends and family. I shed a few tears as I watched Abby and Adam do the same.
I felt very emotional yesterday. I found myself getting choked up talking to Abby's parents, who I adore. They have always been so kind to me and I struggled to tell them that I love them without crying. It was lovely reconnecting with some of Abby's high school friends, who over the years had become my friends as well. The memories of lazy summer days at the pool, and walks down Nassau Street in Princeton came flooding back.
I spent much of my day and night loving on Lisa. She lives in Florida, and we see each other about four times a year. However Lisa checks on me every day. Through text, or sending me a link to a relevant online story, or just a funny picture of herself. These connections mean...everything?...so much?...it is difficult for me to put into words how important she is to me. When I try to express to Lisa or other friends their importance in my life, I cry. I actually bawl uncontrollably. And so, that is how I left Lisa and Abby last night - bawling like a child. But when you have been friends for as long as we have, and have been through as much as we have, the words are not necessary.
Honestly it is hard for me to say, admit, and reconcile in my head, but I think one of the reasons I cry when I say goodbye is the uncertainty. Because I don't know how my future will play out, I question if I will see her again. Will this be it? And if it is not the last time what will my body be able to do or not do the next time I see her? Will I be able to talk? Eat? Share a glass of wine? The uncertainty is killing me. There is never enough time.