Tuesday, February 28, 2017

Letting Go

I am having trouble letting go. In the literal sense. You see I put my hand out to hold onto a grab bar, or the container of tea, or the refrigerator door, and when it is time for me to let go, I can't. Well it isn't that I can't, but it is difficult to say the least. I guess you use muscles to hold onto things and to let go. So just like when I go to hold onto something, I have to let go slowly and deliberately, letting my muscles have the time to release.

Last night I was not at my best. Sometimes - not all the time, but more often than a few weeks before - the ALS makes me feel drunk. Not that my brain is unclear - sharp as a tack my brain is! It's more like my body is drunk and slow, like I have given it up to some foreign substance and I no longer can tell it what to do. So last night I was feeling that way, on top of also realizing that we needed a little extra help with something. Asking for help is hard for me - I am getting a little better at it - but still, you know... I am lying in bed, feeling that drunk-icky-body feeling, texting friends for some help, feeling bad about both things, crying hysterically about both things, and in walks Ean. He sees me crying, I feel bad about him seeing me cry, which makes me cry more, and then he hugs me. My beautiful boy suddenly became a man in that instant and comforted me in a way only he could do.

Eventually I pulled myself together. It took a while. Adam and Ean spent some time pulling up carpet and carpet tacks from our bedroom floor, and I was happy watching them work together, and listening to them chat. I thought of how this disease is changing so much of our lives, including the roles that we typically hold. I am letting go of what I once was and adapting into what I can be. I am no longer the primary decision maker mostly due to physical limitations, but somehow the ALS is making the thought of having to make any decision completely overwhelming. So I am letting this go. I have always been independent, and I can not be that way anymore. So I am letting it go. I am learning how to ask for help with the things that I need. I am trying hard to get over the embarrassment, letting it go. I have to let these things go slowly and deliberately, giving my mind time to release.

Live to Love. Love to Live.

Saturday, February 25, 2017

Leading by my middle finger

This morning - well, let's just say I want a do-over.  This "thing" happened - I won't go into details - but it ended with me sitting on the toilet stark naked, unable to get up, with Adam not in the house. I was able to call him (he was only a minute from home) and when he walked into the bathroom, with a big smile on his face, and "no worries" in his words, I knew it would be okay. The way he reassures me reminds me of when my kids were little. They would fall and bump their heads, and we would smile and laugh rather than panic. They would look to us to know it would be okay. I look to Adam and know it will be okay.

My pointer fingers are pissing me off. The right one especially. It is crooked and bent like a hook, and though I can straighten it out occasionally, it takes time and a enormous amount of concentration. So when I reach for cups or chair arms, or even to go shake someone's hand, that damned crooked hook of a finger gets in the way. Our hands are led by our pointer fingers. Mine are now led by my middle finger, the cursing finger, the one that can tell the world to f#ck off. Though it is the longest finger, it is not the strongest of our fingers. I text with my middle finger. I pull up my shirt sleeves with my middle fingers. I scratch an itch with my middle finger. I'm retraining my body to use the middle finger for more than cursing out a bad driver.

I keep having a dream that the superintendent of my school district comes to my house to check my grade books, and notices that I haven't done the end of the unit assessments for Units 3 and 4 in the math program. She also tells me that I have to start doing the Fundations lessons because I am six weeks behind the other first grade teachers. I start to panic, and then I call Darlene and she does all the Fundations lessons to catch up. I call Stephanie and she tells me that she has the math assessments. It is such a relief that these friends can help me.

Friday, February 24, 2017

Spring in February

The combination of this week's unseasonably warm weather and finally acquiring my new hot pink power wheelchair, has gotten me outside in my neighborhood. (Have I been taking a "walk"? No - roll?, stroll?, jaunt?. Let's go with stroll.) Sometimes I've been out strolling with Adam, or some good friends. But most of the time I've strolled around by myself. This new sense of freedom is glorious to me. Strolling around the neighborhood by myself, kicking the wheelchair into the highest speed it will go, the warm breeze blowing past me, unaccountable to no one but myself. Stopping when I want to look at snow crocuses in bloom, or the running of the creek, or how my neighbor's dog sits so elegantly just inside the storm door. It's a new sense of freedom yet something vaguely familiar. Like the first time I went out by myself after my babies were born.
Earlier in the week, I strolled by my friends Janet and Johannes who were out walking their dog. They were stopped having a conversation with two other neighbors and their dogs. Janet very kindly introduced me to the neighbors, one who I have met on a few occasions. I shook her hand and said "oh we have met before." This neighbor looked confused as she was trying to recall a time she had met this middle aged woman in a hot pink wheelchair. Sweeping my arm awkwardly over the wheelchair, I said "this is pretty new". She smiled kindly and we went about our conversation, talking about dogs and the weather and other neighbors we hadn't seen in a while.  As I continued on my stroll, I thought a little about how we define people. Am I going to be defined as the woman in the wheelchair? Or the neighbor who has ALS? Or the crazy lady who speeds down Pine Knoll Drive in the hot pink power wheelchair with her crazy hair and poncho flying in the wind? Probably. I decided I don't care. I know I am more.
On Monday, a dear friend invited me to have lunch on Thursday. There was going to be about five of us, and I was excited to go. Yet fear initially took over my decision and I declined. I can no longer get up off of low toilets by myself, and I kept thinking - what if I have to go to the bathroom? What if I can't cut my food? And how would I get there? I really want to use my power wheelchair as much as possible, but Adam would be at work and wouldn't be able to use the van to drive me. Fear. All the things I can't do. All the I want to but...I don't want to inconvenience others, or I don't want to be seen weak, or dependent, or less than.
And then, a glorious thing happened. Another friend from this group reached out again, just at the moment when I was thinking "Deb - what the f#ck! These people are your friends! So you need help! Big deal! Go out to lunch!" So, I did. Adam and I gave my Dad a brief lesson on how to use the van, and he drove me to meet my friends for lunch. I ordered food I was able to eat independently AND was delicious. When I needed to go the bathroom, I asked for help. My friend helped me get up from the toilet, and I got over it and it was okay. I didn't let the fear control me.

Monday, February 20, 2017

When there are no words and words are "your thing"

In a conversation I was having with my friend Brian early Saturday evening, he said "Words are your thing." Many out of town guests had come back to our home after the Live to Love fundraiser that our friends had put together for us. We were chatting in my living room. He was referring to the thank you I delivered at the event. "Words are your thing."

Ok. If words are my thing, then how is it that I now have no words? 

How is it that I have no words to adequately thank people for the Live to Love fundraiser?  For raising money so our family can provide for my care? So my children will feel normalcy? 
Where are the words?

What does one say after an afternoon like Saturday when there was so much love in the room that your cheeks hurt two days later from smiling? At every turn there was another person who affected your life in such a positive way that you really needed a few hours to catch up with them.
Where are my words?

I looked around the room and it was like all the different pieces of my life had been transported to one place. My childhood, adulthood, work before teaching, teaching, my children's childhood, family - all brought together to show kindness and support.
Where are the words to thank people for this?

What does one say when this large room was filled with so much love and laughter that it had to spill out onto the porch, into the sunshine, into the warmth of an unseasonably mild February day?
The tables filled with people who came from all different parts of your life, laughing and talking - enjoying music, food, and drink together like old friends. 
How do you say thank you for this?

What do you say when you know your friends from different compartments of your life came together and spent hours working side by side to create beauty and kindness all with you in mind? These once strangers now, at the end of "the day", hugging each other like old friends. 
Where are the words to thank people for this?

What do say when you have been blessed with so much good, and love, and joy, and light? All I can say is that the Live to Love event was something that my family will never forget. "Thank you" is not enough but it is all I have right now, with the promise that this kindness bestowed upon us will be paid forward. 

Sunday, February 19, 2017

Our "Thank You" from Live to Love on 2/18/17

I was diagnosed with ALS on September 29th, 2016. That was only 143 days ago (But who’s counting. In the past 143 days this village - which is comprised of Lawrenceville, Robbinsville, Roosevelt, Ewing, Sharon School, family, friends that are family, old friends, new friends, acquaintances turned into friends, Facebook friends turned into real life friends, blog readers - every single one of you have made us feel loved and cared for. Through texts, phone calls, visits, Wonder Woman paraphernalia, Facebook posts, cards, letters, gifts, sewing projects, house cleaning, home care, meals, cupcakes, chocolate, chocolate, chocolate, chocolate, wine, wine, wine, breakfasts, a bracelet campaign, get-aways, swim caps, sick days, monetary contributions, today’s event - all of this done in only 143 days. Adam, Sarah, Gillian, Ean, and I are beyond thankful for what you have done. It is the underlying support. It is the smiles of good friends. It is the come when I call. It is my kids seeing their friends wearing Live to Love bracelets. It is the hugs. It is the knowledge that we have surrounded ourselves with people who take care of people. And that we know that this love and comfort and caring that we feel today and have felt for the past 143 days - but really forever - will continue on. The kindness that you have shown our family will not only stay within us for the rest of our lives, it will trickle through us. It will trickle through the community and the children you teach. It will trickle through your children and the children that come after them. The consequences of such kindness will be remembered and revered and copied and mimicked because it is that great and that important. Thank you from the depths of our hearts and souls.

Thursday, February 16, 2017

From the lime green storage containers...

We are having some renovations done to our home to accommodate my disability and the wheelchair. Adam has begun the tedious process of moving "stuff". We have a lot of "stuff".
Adam ventured into the basement and brought up the empty storage containers with the lime green lids. These are the containers I use to pack up my classroom at the end of the school year. After I unpack the containers and set up my classroom at the beginning of the school year, I bring the containers home to my basement until they are needed again. Since we only need them to store "stuff" for a few weeks, he began to pack them up.
I watched Adam put our home items in the containers, thinking about all the times I had put my classroom - my second home - into those same bins.
Then I began thinking about how at the end of this school year would be the last time I pack up my classroom.
Then I thought why would I need all those things anymore. I will just donate them all to the next first grade teacher.
Then I thought about all of my books.
Many of the books that I use in my classroom are the books I read to my own kids, to my babies. They didn't wear fancy clothes when they were little, but we always bought books.
Then I cried.
When I was done crying I thought about how I always imagined that I would be the grandma that had shelves upon shelves upon shelves of children's books at her house - many that belonged to my own children - for her grandchildren to read when they came over to visit.
Then I cried some more.
So I decided that I will donate most of my classroom supplies to the next first grade teacher, but the books that hold memories for me and my children are coming home with me.
Then I thought about the books that each of my kids loved the most.
Sarah's was definitely The Big Red Barn by Margaret Wise Brown. We read that book so many times, we had to purchase a second copy. She read that book with the same expression and intonation that I used. It was adorable.
Gillian loved this book called The Noo Noo Tree. I don't remember who wrote it. But it was about a family of monsters, and the baby didn't want to get rid of her Noo Noo (pacifier). The parents began to take her Noo Noos away and they buried them in the yard, and up grew a Noo Noo tree.
Ean and I loved reading Nacho and Lolita by Pam Munoz Ryan. We read this book often, but when he was a little older as it is a more complicated text with exquisite illustrations. Our memories of this book always include me crying at the end. I love this book so much that I bought a copy for my friend Danielle.
I might not be around to see my grandchildren (if my kids choose to have kids - no rush or no pressure!) but I hope the books that I loved and treasured and read and created memories with will make it to their shelves and their hearts.

Wednesday, February 15, 2017


I sat down to write a few times today. Every time I sat down I felt like I was hitting a wall. The ideas aren't flowing as they were, and I feel like what I really want to write is redundant and just plain uninspiring - "I don't want to have ALS anymore". Not that I really ever wanted it. But I'm done please. Time to go away.

So I am going to write about the number 101 (one-hundred-and-one).
There are 101 Dalmatians.
101 degrees is a fever.
101 degrees outside is a really hot summer day.
More importantly, today is my grandmother's 101st birthday. Yup, she is 101 years old. One century and one year. I spoke to her today. Of course she is worried about me, but I think she was pleasantly surprised to hear me in good spirits with a pretty clear voice. Talking to her on the phone is a bit challenging because she gets excited (she is an excitable sort) and she tends to talk over you. But she told me that she got so many flowers for her birthday (her friend Ellie sent her flowers in the shape of a cake!), that her room almost looks like a funeral parlor. She told me she was very happy to hear my voice and that I said today was a good day and that I was not in any pain. She reiterated that life is full of good and bad - good that I don't have pain, bad that I am dealing with this. It was a short conversation as she doesn't really like to spend a long time on the phone, but it was enough to make us both happy. I cried a bit when I got off the phone, as I wondered what it feels like to be 101 years old and to have seen such good and bad in the world, and then have to worry about this.
Today is also the 101st day of school (at Sharon School). I know this because counting how many days we have been in school is part of the math curriculum. And yesterday was the 100th day of school, and when you teach in an elementary school the 100th day of school is a holiday! The 100th day of school landed on Valentine's Day, and when that happens you might as well have a full moon on a Friday the 13th while black cats walk under a bunch of ladders. But, I digress...
So, today was the 101st day of school.
In calendar time it is:
One hundred. One one.
Ten tens. One one.
101 tally marks.
One dollar and one penny.
Four quarters and one penny.
Ten dimes and one penny.
Ten bundles of ten straws. One single straw.
I always liked the 101st day of school a little more than the 100th. On the 101st day we begin subtracting. (180-101=79) Seventy-nine days left of the school year. I typically begin to talk to the kids about how we have less days left in first grade than we have completed. We often go back to our Hopes and Dreams wall that we created during the first week of school, and reread what we wanted to accomplish. Many of the kids are excited to see that we have accomplished many of our goals like "learned how to read", or "do math", or "play on the playground". But often times there are goals that they haven't reached yet, like "learn how to play soccer" or "spell big words". We talk about how we have some time left - 79 days to be exact - and how we better get busy! The 101st day is a reinvigorating day.
I feel like I am on my 101st day. I have accomplished a lot. A marriage, a family, a teaching career, a college education, just to name a few. And now I go back to my Hopes and Dreams wall and decide what it is that I want to work on for the next 79 days. I don't think "playing soccer" is in my future, and I already "know how to spell big words". I know I don't want to call it a Bucket List, as that conjures up thoughts of death and dying for me. So I'll stick with Hopes and Dreams and add and subtract from it as I see fit. No real rules when you are working with 79 days.

Live to Love. Love to Live.

Sunday, February 12, 2017

Jagged Nails

So why am I sitting here today feeling like a lump on a log, woe is me, sleeping for hours on end?Ugh, enough! Get over yourself Deb! Buck up! Tell the ALS to go fuck off and do something for someone else. Wipe off the kitchen counters, or send an email to a friend, or write a thank you note. Geez! You are blessed with the need to write a million thank you notes, and all you can do is have this pity party for yourself!?
Stop focusing on what you can't do and focus on the CAN DO!
My CAN DO is becoming more limited every day. Let me rephrase that. I still CAN DO things but it is becoming more difficult and it is really pissing me off. I can still talk, but I slur many words. I can still type, but it is tiring on my hands. And I can't shift my thinking from this negative, icky, woe is me hole I have dug for myself back to the positive, not self absorbed person that I really want to be. I am tired and cranky, and I don't want to be this way. I don't want to be tired. I am tired of being tired. Where is all that energy I used to have?! I wish I really could have bottled it. I want it back.

And I know that these feelings are warranted. And I know I have the right to have them. I know that. I just don't want them anymore. Go! Be gone! Go away so I can be productive and carefree. Go away so I can be helpful and my old self once again. Go away so I can focus on being appreciative!

Yesterday I needed my fingernails cut. Many were jagged and broken. The day before I had taken the nail clipper in my hand and tried to cut my nails myself. I didn't have the strength to push the clipper hard enough to cut. So then I tried to use my teeth to push down on the clipper, but to no avail. The nail clipper went flying. So like with many things I can't do I asked Adam to do it for me. And yesterday he clipped my nails. With ease. And grace. No flying clippers. No use of teeth. At first I was in awe that something so difficult for me could be so easy for him. And then that awe turned to envy. And then that envy turned to general "I'm pissed off because I can't trim my own fuckin' finger nails by myself". So that is where I think I am right now. Envious and fuckin' pissed off. Ugh!
I was going to apologize for my overabundance of the "f" word, but no, I'm not. It's the only word that I have right now that appropriately describes my mood.

Taking a few breaths.

Ok. Thinking about yesterday. About the nail clipper incident. But there was also the time I spent on the pool deck at a Lawrence Lightning swim meet, seeing the sea of red swim caps that said "Live to Love, Love to Live". And the signs. The handmade signs with the same message, all in support of our family. And the smiles. The smiles of the kids as they saw me come in because they were able to make a connection between the cause and the person. And the greeting. The "Hi Mrs. Dauer" from Annie, and remembering I have known her since she was a wee little girl in her mother, Missy's arms.

Ok. Thinking about today. About the many hours I felt sorry for myself. But there was also the time I drove with Adam to Target in our new van. And I was able to go in the power wheelchair, and cruise around the store by myself, and be in control of my own destination out in public for the first time in a very long time. And the steps it took to get the van. And the the generosity it took to get this van. And how this van is a sign of freedom not restriction.

Again thinking about today. About Mindy taking the time to visit. And how it was really lovely of her to come see me. And how so many people reach out. And how the ALS is really making me feel more connected.


I am feeling a bit more like myself. I was able to move from the woe is me, to seeing the good.
However, I am still fuckin' pissed off about the nail clippers.

Live to Love. Love to Live.

Thursday, February 9, 2017

Today's clinic appointment

Well, "the weather outside was frightful..." but we ventured out in it this morning to get to Philly for my ALS clinic appointment. The snow was coming down so hard this morning in Lawrenceville, that Adam cleared the driveway twice within 45 minutes before I even got out of bed at 7:45. Though the snow was heavy and abundant here in the Trenton area, there were very few cars on the road, and by the time we got to Philly, the snow had turned to mush/rain and there was barely anything on the streets. All was good.

I saw Dr. Elman, and Jen, the Nutritionist. The other therapists (OT, PT, and Speech) I was supposed to see did not come due to the high volume of cancellations the office got today. At first I was a little put off by this, but it turned out to be fine. I am going to have home visits from these therapists (or ones in the home care office) and that will be more helpful anyway.
Mostly good stuff resulted from this visit. My breathing test indicated a slight decrease in breathing strength but nothing to be worried about. It is definitely not as strong in a laying down position, but that is to be expected. I am maintaining my weight which will help me maintain my strength. I received a couple of eating utensils that I can bend toward me in order to help with eating (Adam managed to get us an extra one).

Dr. Elman answered all my questions, which ranged from medical marijuana (I decided I don't need it though I might later) to my over the top crying spells (I will start a medication for that and no, it won't make me a zombie). We talked a lot about how my body is changing, and why it is doing the things it is doing. I am going to have special sleeping boots made that are really soft and supportive so my heels don't hurt as much while I sleep. I am adding a few new meds as well as a vitamin supplement to my repertoire, including something new for this REALLY annoying cough. And if that doesn't work there is a plan B.

We talked about some difficult things like tracheotomies, and why or why not PALS would chose to have one or not to have one. She reassured me that I am no where near having to make that decision, but since I am a big believer in having all the information, it is good information to have.

There were three very reassuring moments for me. The first was when she was quickly reviewing my blood work from November. I might get this explanation totally wrong so bear with me. She said my "blah blah" looked good. I said what is the "blah blah". She said it is a blood test that measures the muscle protein (I think) in my blood. If the numbers remain within a certain range is an indication that the disease is progressing slowly. Granted, I am having this blood test again in a few days and I will see if it changes, and this test was all the way from November, but this was reassuring to me.

The second reassuring moment was when Adam asked if things can plateau. For example, can I lose leg strength to a certain point and then it stay that way for a while. The answer is yes. I was thinking that my legs have plateaued, so I might be able to stand to transfer for longer than I originally thought.

The third reassuring moment came during our conversation with Jen, the Nutritionist. I am starting to choke on thin liquids like water. I was really afraid that I would have to start adding thickeners to my water, tea, etc. Honestly, the thought of that really grossed me out. She said I can still drink water, tea, etc., but when my muscles feel tired (after talked, laughing, crying, first thing in the morning) I can drink things like milk, V8, fresh juice drinks, smoothies. They will keep me equally as hydrated. That was reassuring to me from a quality of life standpoint. And yes, I can use straws. Just sip slowly.

I am blessed to have access to this fabulous clinic. I am blessed to have found Dr. Elman. I am blessed to have parents and a husband and three beautiful kids and a wonderful extended family and friends who make me laugh and are along for this ride. I am blessed to have to blog about my appointment in order to fill in everyone I want to keep in the loop.

Live to Love. Love to Live.

Tuesday, February 7, 2017

Staying busy / Balance

I have had my motor running since Friday: 

Friday afternoon visit from Danielle and Rose.
Saturday Visit from Evan.
Short Saturday pop in from my niece and nephew (with cupcakes!).
Saturday night Olive Garden with Adam and Gillian. Great conversations.
Sunday breakfast with Kay, Marissa, and Laura.
Target and Marshalls shopping with my Mom and Dad on Monday.
Monday surprise visit from Regina who was up from North Carolina.
Monday night dinner with Kim, Jen, and Carolyn.
Tuesday appointment with the lawyer.
Tuesday visit from Evelyn - I now have clean-shaven legs! (It's about time!)

And now...quiet. 
The occasional noise of my dogs' nails on the wood floor.
Or a car going by.
Or the banging of my bracelets on the keyboard.
Gillian's footsteps upstairs.
But mostly quiet.

I am not sure which is better. Maybe a balance of both? I love seeing friends and catching up on old times. I love getting out of the house and shopping and spending time with my parents. But I also need the quiet. I need to be able to reboot and listen to nothing; rest my voice; contemplate the next step. Honestly this is just me. I have always needed this balance. 

The next few days will hold:

A visit tomorrow morning from some really great people that are helping us.
My Dad coming over to help me navigate the process of voice banking.
Thursday is our big appointment at the ALS Clinic in Philly - doctor, OT, PT, speech therapist, first swallowing test.
Friday holds a meeting in the morning.
Friday afternoon - van!

This happens to be the busiest week I have had in months. I appreciate the busy and the distractions. I am grateful for the visits and plans. I want to have moments to look forward to. I need to know that our "stuff" is in order. And I will find the time to rest, and breathe. I will find the balance I need.

Monday, February 6, 2017


My voice is definitively started to diminish. It is thick and slow. I can tell how tired I am by how difficult it is for me to get my words out. I need to bank my voice as soon as possible. I am going to start on Wednesday. From the looks of things, it will take many hours. My friend Ellen did a bunch of research for me and helped me find a site I am going to use. It really is amazing what is available on the Internet.

It's kind of ironic because I never really liked my voice. When I would hear it recorded or outside my head, it always sounded very high pitched and nasal. Now, I don't want it to go. I will most probably need some sort of assistive talking device. I can use the computer programmed voice or my own. I choose my own. It is a part of me that I can preserve.

Though I haven't explored this too thoroughly, I believe that part of what I can record are expressions that are unique to me. For example, I might want to record "All is good in the hood" because I say that often. Or "skadamooch" because I use that word to get Sonky to move. Or maybe "Jackson, put your boy part away!"; "Asshat"; "Fuck-it!". The possibilities are limitless!

These expressions are indicative of my voice. Not the voice that you hear, but the voice that is within me. My self, sense of humor, way of being, what I want to say, who I am, what I want to be. Banking my actual voice gives me the opportunity to preserve what I sound like but also partially preserve who I am. I think lots of people who have neurological diseases - ALS, MS, Parkinson's disease - are of the opinion that one of their greatest fears is to lose themselves, who they are, in this journey. Will I lose the ability to express love, or retell a funny story, or to stand up for what I believe in because I can't vocalize it? Will my witty comebacks, or trash mouth be as effective if I speak more meticulously or not at all? I already can not change the speed or assertiveness of my expression, so when I reprimand the dogs it doesn't come out "Cut-it-out-Jackson!" but rather "Cut  it  out Jackson."  I will more heavily rely on my writing to reflect my voice. More blog posts, type-written letters, stories, personal narratives, emails and texts. I will make sure that my voice is heard.

Live to Love. Love to Live.

Thursday, February 2, 2017

A smattering of stuff

Last night I had one of those dreams I didn't want to end. I was at Sharon School, sitting in on lessons in the Reading Recovery room. (This is something I do every year because the Reading Recovery teachers perform teaching magic and I learn something from them every time I observe a lesson). First I observed a lesson with Chris, then Loryn, and then Pam. The last lesson I observed was taught by Therese, who in real life is not a Reading Recovery teacher, but in my dream was the team leader of all the Reading Recovery teachers. She sat with me and a student named Courtney who had a crown of little white and purple flowers in her short dark hair. Therese showed me how to mark up a reading assessment and then she had to go run an errand. Courtney and I sat and talked about all sorts of things that make her happy, like her puppy and her baby brother and her Barbies. Then I walked Courtney to gym class and Kevin was teaching the kids to play volleyball and I jumped in to play with them. I kept hitting the ball to Courtney and every time she hit the ball back to someone she smiled from ear to ear. She was so happy and so proud of herself. When I woke up I felt exhilarated like I had just run around the block. It felt so real!

My body has been feeling extra tired lately (maybe because I have been playing volleyball - heehee). Yesterday and today I took very long naps. My body doesn't feel like it has been getting enough rest. It is becoming more difficult to go to the bathroom independently. I can do it, but it takes a long time. Honestly, that really sucks. More than anything. I mean who the hell wants people to help them in the bathroom?! I plan my day and my bathroom visits so I only have to do one visit while no one is home with me. That is very doable. But when Adam is home, or my parents are over, it feels good to know that they are there just in case. I should probably be used to planning my bathroom visits after living with UC for thirty years but this seems different.

It is taking me longer to form words, and I think it is becoming difficult for people to completely understand me when I talk on the phone. I have to repeat myself often and by the words that these people think I am saying, it makes me think that I am slightly slurry.  I suspect when I am face-to-face with people I am easier to understand. They can read my lips and see my expression, and understand the context of the conversation. My mouth muscles get really tired after a while, so if you are with me I might keep my conversation to a minimum.  I felt like I had some difficulty swallowing pills yesterday. But that feeling seemed to have subsided. In a person that doesn't live with ALS, this is a minor inconvenience. For a person who does live with ALS this means other things, like weakening of throat muscles, swallowing difficulties, which leads to eating difficulties. I try really hard not to think of all these awful things, but you know...I do.

A few nights back, my ostomy bag leaked. It was actually morning - 1;36 AM to be exact. I thought about keeping this experience off my blog, but I decided it's all or nothing, and I am going for all. So, I had to wake Adam up. He got me into the bedside wheelchair, and we got me into the bathroom. Luckily I didn't leak on the sheets. I had to clean myself up, prep my clean ostomy supplies, remove my dirty ostomy seal and bag, and change it. It took an hour. Yes, an hour. At some point I just started to laugh. Every time I went to put on my clean seal, Consuela started to leak, and I had to start all over again. Ugh. I had a blog reader ask me recently if I would post pictures of the supplies I use for my ostomy. Maybe. I'm thinking about it.

In between naps and my leaking ostomy, I am living. I went to the movies with a great bunch of ladies the other night to see Dirty Dancing. I visit with friends. I have moments of deep, deep sorrow where I can't control the sadness. I have other moments where I am content and feeling spiritually full. I spent some time this week with my parents talking about something other than my ALS and that made me feel helpful. My Mom came over and helped me (well she did most of it) cook Bubbe brisket. Sarah seems happy in her second semester of college, and we text and talk on the phone in a way that makes me feel so connected to her. Gillian is studying hard, and a joy to spend time with. Ean is swimming and his team is getting ready for states. He comes home every day hungry and happily gives me a tidbit of information about his life. Adam is spending every day taking such good care of me - of us. We are still able to make each other laugh. We spend a lot of time keeping up (and trying to predict the future) with the ALS. What will my needs be in a month? Six months? A year? We made some adjustments to the ramp situation in our house. Our friend Danny is going to help us with some renovations. I keep receiving notes, cards, and messages of such kindness and support. They often bring me to tears. Gillian and I were commiserating the other day that we both cry when people are nice to us.

That is all for now.

Live to Love. Love to Live.