Sunday, March 26, 2017

Diagnosiversary

I have been dreading this upcoming week.  Wednesday is my six month diagnosiversary. I have been living with the knowledge that I have ALS for six months. Six months. Six. Months. If I am typical of other PALS my age, that is 1/4 of the two years I am supposed to have left. Or 1/6 of the three years; 1/8 of four years; 1/10 of five years. That is where it typically ends.
I have moments where six months seems like an enormous amount of time - this endless period of grieving which alters and changes with the loss of each little muscle. Every time I get a cramp in a place I didn't before I imagine it is my muscle dying. Sometimes the cramp is deep and very painful, almost like I can hear it fighting to survive. Other times the cramp is small and weak, like the last little breath that the muscle had.
Six months of experiencing changes in my body and abilities that I never thought could happen. Walking, limping, walker, wheelchair, power wheelchair.
Standing, leaning, holding on. needing another.
Writing/coloring, different hold, messy hold and handwriting, no hold, others writing for me.
The list goes on...
I alter deadlines in my head and out loud. And as much as I try to keep our lives as normal as possible, I see and hear my kids changing their plans and goals based on this concept of limited time.
I wonder if we would be better if the end would come faster rather than drag on and on and on.

There are other moments where six months is fleeting as I spend time laughing and loving my beautiful children. That went too fast I think. Slow down. I want it to creep along so I can savor the sweetness of it all. Gillian coming home at the end of the day, plopping herself down in the love seat next to my chair. Sometimes chatting away about her day, sometimes both of us sitting quietly while she catches her breath. Ean revealing more about who he is every day through humor and opinion and artistic creations. Sarah sending snippets of her busy life at school through texts and pictures and political commentary that shows maturity and happiness. All of this goes so fast and I want THIS to slow down so the memories become more ingrained. I want to see lots of Springs come and go, not a limited amount. I want to see forsythia bloom and crocuses peek up and the robin come back to the nest on our light fixture a million more times, not just two, three, four, or five.

I don't write this for a response. I know many will think and say (as I do often myself) that I can live as a PALS for much longer than the anticipated two to five years. That I might get on a drug trial. That the cure is coming closer every day. Have hope. Feel hopeful. Don't let the negative thoughts take over. Stay positive. And I do. And I will. And just because this blog post feels especially dark and "woe is me", this is not the whole of who I am at this moment. Just one facet of a myriad of confusing and multi-dimensional feelings. This is a snippet of what it feels like to me to have my six month diagnosiversary looming in front of me.


Thursday, March 23, 2017

Sam and Izzie

It was December four or five years ago. A new student joined our class. His name was "Sam". He was a boy with a shy smile, big dark eyes, and a somewhat limited understanding of the English language. We greeted our new friend, and gave him space at the yellow table. He was to sit next to "Izzie". Izzie had a little bit of a temper, was very competitive, and was a great reader. My intention was for Izzie to help Sam get acclimated to our classroom, our procedures, and new classmates. The day before I had pulled Izzie to the side and asked her to be our new friend's helper. She was excited and up for the challenge.
The day that Sam joined our classroom community happened to be the day that we were playing subtraction BINGO in math. The class had earned this privilege, and they were very excited. I knew playing any game, and possibly losing, would be a challenge for Izzie. To prepare the class for the potential for losing and disappointment, we reviewed appropriate responses to being upset about a loss. "Bummer", "Maybe I'll win next time", and "Good game _____" were just a few of the phrases we reviewed and wrote on the board.
Sam took his place next to Izzie and I happily noticed her making sure he had counters and put one on his free space spot. We began our game, and as I read the subtraction problems I also wrote them on the board. I saw Izzie regularly helping Sam, and the two of them smiling as they shared answers. I went over and quietly complimented Izzie on her good sportsmanship. She beamed with the responsibility.
The end of the first game resulted in a BINGO for Sam. Because he was a bit shy he didn't yell BINGO himself, but rather Izzie yelled it for him. Izzie seemed proud of her participation in this win, and she did not have a tantrum as she had in the past when confronted with a game loss. I heard a few "Bummers" and "Good game Sam" and we went on to the next game. The math period ended with Izzie not winning any of the games. I could sense a bit of disappointment but she kept a brave face.
Later in the day we were outside for recess. I was walking around the playground and I found Izzie crying under the climber. I approached her and asked her if she was okay. She ignored me and turned her head. Having a strong suspicion about what was bothering her, I asked if she was sad about not winning a BINGO game. She started crying harder. I sat with her a while not saying anything. After she stopped crying she said "I am glad Sam won". I told her that she did a great job being Sam's friend, and we talked about how you can feel happy and sad at the same time - happy for Sam and sad for yourself. Izzie seemed really surprised about that statement. It was then I realized that first graders didn't really have a grasp on that concept of feeling more than one emotion, and it was okay and normal to feel that way.
Fast forward to March of 2017. I am reclining in the living room, listening to country music, thinking about all the nice things that have happened lately. We have an upgraded, upstairs bathroom due to the generosity of good friends; I have wonderful relationships with strong women; a husband who still loves to make out; and thank G-d no one was hurt when our parked car was rammed into yesterday. Yet I was sitting there crying so hard that I was having trouble catching my breath. Yesterday I couldn't run to my child as she was distraught and crying - I could only watch as I tried to comfort her with only my words. I was getting angry at myself that I was "sad" when all these "happy" things had happened. And then I remembered Izzie and the lesson she learned during BINGO - that it was perfectly acceptable to feel more than one emotion.
I laughed as I compared myself to a first grader. I thought of the sorrow I felt last night learning that one of my online support group friends had passed; I smiled at remembering how funny it was as my Mom blocked herself from Sonky's paws behind the manual wheelchair. I shed tears for my inability to bend my own right leg; I laughed about the Tastycake escapade. I cried for the loss of my voice; I laughed at the words that my voice recognition software thinks I am saying! Thanks to Izzie I remembered that it was perfectly normal to feel this way. Thanks Izzie.

Tuesday, March 21, 2017

Necessity is the mother of invention OR how do you grab the grabber

Adam bought Tastykake Kandycakes. For the kids. For their lunches. Not the peanut butter ones, but the chocolate ones with the perfect thin layer of white cream that runs through it. Oh. My. Goodness. They are the perfect little cake. Come in two-packs. A great snack for after lunch or around three o'clock when you just want a little something.

Adam hides the snacks he wants to leave for lunches. Or he thinks he hides them. I let him think they are well hidden, but well...they are not. Most of the time I just leave them alone but today I just couldn't. The Kandycakes were calling me. "Deb! Come and get me! I am delicious with a glass of milk!"

I surveyed the situation. The Kandycakes were positioned behind the bottle of gummi multi-vitamins on the kitchen window sill. Way out of reach from the pwc. I remembered that I have a grabber. Looks a little bit like a back scratcher, but with a claw on one end for grabbing things, hence the name "grabber". I rolled into the living room to retrieve the grabber. However with all the construction and chaos going on in our home it was no longer leaning against the railing. Alas, it was on the floor wedged against the wall. Out of reach from the pwc.

I surveyed this new situation. I grabbed a towel and began swiping the grabber until it pulled away from the wall. Now if I leaned over just so I would be able to pick it up. Somehow I was able to manipulate the pwc into a position to grab the grabber in between my middle finger and my ring finger. Almost...got...it! NO! It fell! But this time it fell leaning against my foot which was resting on the foot plate of my pwc. If I just use the controls to very s-l-o-w-l-y raise the foot plate I could grab it. Okay slowly...slowly...a little more...GOT IT!

I had possesion of the grabber. I was a little tired from all that hard work, but I didn't forget about the end goal. Kandycakes and a large glass of milk. I rolled myself back into the kitchen. I realized that before I was to get to my desire, I was going to have to conquer the large jar of multi-vitamins. Should I grab them? Probably not a good idea. The jar would probably be too heavy for my weakened hands and arms. So I went with plan B - I would use the grabber to just push the jar out of the way. I was able to lift the grabber and push the jar to the left just enough to see the pile of double-packs that Adam had so innocently hid from me.

One more step. My mouth began to water in anticipation of my reward. I lifted the grabber toward the windowsill in the open position with my left hand ready to close upon the sweets. My arm began to cramp a little with the weight of the grabber, but I was not going to let that stop me. I had experienced worse. As the opening got to the goal I squeezed the handle and the claw closed upon the cakes. I slowly lowered the Kandycakes into my lap and let go. Success!

I took a few moments to admire my work and catch my breath. I rolled over to the fridge and opened the door to get the milk. I looked inside and my heart dropped. The milk was on the top shelf. Way beyond my reach. I smiled and shut the fridge. Chocolate Kandycakes and ice water was going to have to do today.

I opened the package and savored every bite of those cakes. It was totally worth it.

Monday, March 20, 2017

The Kindness of Joyce

I saw my parents today. We went out to lunch and did some shopping. We do lunch and shopping well. Lemon Blueberry pancakes, the company of my Mom and Dad, Target, and Wegmans. What could be bad?
Over lunch we were reflecting upon last week's visit to the Philadelphia Flower Show. I had been wanting to go to the flower show for years. I hesitate to say it has been on my bucket list because that makes me think about dying, but yes, it has been on a bucket list of sorts. So I got tickets for myself, Sarah, Mom, and Dad, and off we went. The cars going to the flower show, combined with everlasting road construction and two days post heavy snowfall didn't make for easy traveling through the city, but two hours later we got there. We could see that parking was going to be an issue so Dad dropped Mom, Sarah, and myself off. Finding a location to pull over and open the van/ramp for me to get out had its own challenges, but Dad is city-driving savvy and he pulled it off. The intention was for us to go in and him meet us inside. Well, that never happened. Dad drove around for three hours and was never able to find a spot. In true Dad fashion he told us to take our time and he would come back for us when we were done.
So that is what we did. The flowers and displays were beautiful! I was most impressed with a display that a local high school did using Anne Frank as their subject. It included a building model that showed the inside of her hideaway home, an Anne Frank statue, and the gardens that would have been outside the home. Interspersed with the flowers were quotes from her diary that referenced the beauty of the flowers. It was quite moving.


After a bit, Sarah went off to find a snack and Mom and I went off to find the bathroom. The first bathroom we found had an "out of order" sign on the handicapped stall. No go. The second bathroom had a handicapped stall so we got on line. As we waited our turn we learned from the bathroom custodian that this bathroom was originally a men's room revamped into a women's room as the flower show draws more women. It had a handicapped stall, albeit smaller than most. (I am not sure why the men's room would have a smaller than most handicapped stall as wheelchair sizes are gender neutral.) Mom and I filed into the bathroom, commented on the urinals, and got to work. I was able to get my pwc in, but the door was definitely not going to shut, so Mom stood guard. I did what I needed to do, but then it was time to get up and that wasn't going to happen by myself, so Mom had to come in. Did I mention how small this stall was? Mom is small but there was no way Mom holding two purses and a jacket, the pwc, and me were all going to fit into the stall. Something had to give. Mom turned to her left and asked the bathroom custodian if she could hold our bags. She took them without hesitation. Mom was then able to SQUEEZE in, and help me up. And when I finally got out of the stall, giggling at the hilarity of it all, there was the bathroom custodian watching our purses, giggling along with us. She could see that I was struggling to reach the water and the soap, so without hesitation she assisted. As she was washing my hands, I thanked her and asked for her name. She said "Joyce". Joyce handed me the paper towels, held my hands and said "G-d bless you". We looked at each other in the eyes, smiled that deep sense of appreciation, and Joyce handed me the purses.
The flowers were beautiful, and I could breathe in the smell of hydrangeas and never tire of it, but it is the kindness and benevolence of Joyce, and the unselfishness of Dad that I will remember from that day.
Today Dad parked the van, the ramp lowered and I got out. I drove myself over to the sidewalk, face to the sunshine, watching my parents. They closed up the van, and together, like a well oiled machine, moved three shopping carts out of the way of other handicapped parking spaces. I smiled. I thought about Joyce, my Dad, my Mom and I giggling, kindness and the good feelings that you really can find anywhere if you just look. Today was a good day.

Monday, March 13, 2017

Cheap sweatpants

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Cheap sweatpants
crawl up my calf
and reveal too much sock.
Hair in perpetual
bedhead
flat
from sleep and headrests.
Arms no longer reaching
places to scratch
or scrunch.
Gnarled fingers
scratch at my face
attempting to bring on youth
with false claims
of anti-aging cream.
Shirts that rise up
above my soft belly
and gassed up bag
and up my back
revealing old lady
panties
previously only used
for periods
and crampy days.
Scratches and bruises
last for days
weeks
months
leaving traces of dry skin
when they are gone.
No longer "what if"
but rather "when"
for trusts
and wills
and directives
and health plans.
Blue feet
bruised toes
cracked nails
all on this
unrecognizable body.
Success in pulling up
elastic waistbands
using strength
typically used for
opening brand new
jars of pickles.
Resonating words in
speeches made by actors
who play their end of life
when you are living
end of life.
Crumbs
crooked forks
extra napkins.
People look -
I smile
and they smile back.
Sometimes from embarrassment.
They were caught
in a stare.
Sometimes from sincerity.
Can't remember which one I was.

Saturday, March 11, 2017

Flying

Growing up in Roosevelt we had this family friend named Ginny. She lived in town much longer than we did and still lives there to this day. After my parents moved away my Mom kept in touch with Ginny and they talk on the phone and visit when my parents are in New Jersey. I have been thinking a lot about Ginny lately. I don't really know much about her history, or her family, but I have always liked her. We tend to have the same political sensibilities and I remember once speaking to her and our mutual friend Jane about the issues of public education, Governor Christie, and teacher frustration. She always exudes confidence. I remember passing her on the streets of our small town - me on my bike, Ginny swiftly walking with perfect posture and sensible shoes. She always greeted me by name with a smile on her face and asked me some pertinent question about my life. Sometimes she would be walking with friends. Sometimes she would be walking with her dog.  Ginny is just a bit older than the last time I have seen her, but something tells me she is still the confident, strong woman I remember her to be.

The other night I dreamt I was flying through Roosevelt. A bird's eye-view. Almost like I was in a Google map. I passed all the landmarks that were important to me. 
My house.
The Katz' house.
The wiffle ball field that was between our homes.
The little hill separating our home from David's.
Lisa's front yard.
The creek.
The closed road.
The road that led up to the cemetery.
Abby's backyard.
The wood's behind my house where the bullfrogs lived.
I passed Jimmy washing his car, George sitting in the driveway beeping his horn for Margaret, and the kids playing on the tire playground.
I watched the people coming out of synagogue from high holiday services, the horses running up toward the tree line of the horse farm, and my Dad putting up our swing set with Michael and Bruce.
I saw Ginny walking down the street with her dogs, and I followed her. She walks fast but I was able to keep up because I was flying. I remember wondering where she was going, and how long she had been walking, and would she ever get tired. I followed her for what seemed like a long time and then...the dream was over. It ended with that falling feeling, and my whole body jerked awake. Maybe I bumped into a tree or something in my dream. I don't remember. 

I like thinking about and dreaming about Roosevelt. It was a pretty nice place to grow up. It wasn't perfect by any means - our little town had more than our share of hardship, tragedy, and sadness. It was really small. It is really small. Two-square miles. (The joke is if you blink you would miss it.) I think that limited us in some ways. But in other ways it forced us to dream bigger. I enjoy talking to past and current Rooseveltians about memories, and who they know and where they lived and who were their neighbors. It makes me feel safe. 

It was suggested to me by someone I respect immensely that it is important for me to remember the past, and have comfort in these memories, but also work on creating new memories, and look to the future. That is hard and sometimes very painful. But I am working on it every day. Making plans, laughing, taking pictures, doing things that are difficult because I still can.

I am glad Ginny was in my dream the other night. It reminded me to straighten my back, put a smile on my face, and keep on going.



Tuesday, March 7, 2017

Gillian



Today my baby girl turns seventeen. Seventeen! She is not the baby of the family but she is my baby girl. She is out with Adam as I write, taking her driver's test. Time is sure rushing by.

A few weeks ago, at the Live to Love event, old friends reminded us how Gillian was in a rush to come into this world.  We were having a Superbowl party - in March. I know that doesn't really make sense. We were scheduled to have a Superbowl party the day of the Superbowl but there was a huge snowstorm and our friends were coming from all over New Jersey so we canceled and rescheduled for a day in early March. It was at least six weeks before Gillian's due date - what could go wrong?

About midway through the afternoon, I came out of the bathroom and announced to my friends and Adam that my water broke. And like good friends do, everyone kicked it into high gear. Adam called the doctor's office, Jen came upstairs with me to pack a hospital bag, and Tom sat on the couch with two year old Sarah to watch a Barney video (ugh - Barney!).  Friends packed the food away, did the dishes, straightened up the house, and within an hour my parents were there and we were off to have a baby!

I was in the hospital for a little less than a week. Gillian was early and they wanted to keep her in as long as they could to give her time for her lungs to develop.  In the very early morning of March 7th they discovered that not only was Gillian anxious to come into the world, but she was upside down and backwards and there was no longer enough fluid to turn her around. So, we went in for a c-section and a few hours later we were blessed with a five pound baby girl.

Gillian's first year was not easy. Breastfeeding didn't happen, regular formula gave her reflux. We ended up feeding her "liquid gold". She didn't sleep at night unless she was in her car seat in her crib, always needed a pacifier, and had a tendency to nap for only a twenty minute stretch. But she loved laying on her blanket watching the trees and the shadows and she had a smile that would light up the room. After year one we realized she was going to need a bit of help meeting some milestones, so she had PT and speech therapy. And though she wasn't talking to us until she was much older, Gillian was always watching. She would listen and look, gathering information about the world around her.

Gillian has never stopped watching, listening, and looking. She has a keen sense of "what should be" and if a situation doesn't agree with her sense of right and wrong, she stays out of it. Loyal to her family, she learned to keep the peace between her brother and sister during the years when hostility ran high. She never really took sides, as each of them are incredibly close with her.


During more complicated days Gillian is often the voice of reason. She helps when a hand is needed and jumps in even when it is not.  This year has brought moments when I have had to ask her to do things I never thought I would have to ask. And she does them. Without argument, question, or concern. When the task is done, she moves on. We still laugh and snuggle and she enjoys telling me the details of her day.

I write this today because it is Gillian's birthday, but also because I am learning that even those that aren't the squeaky wheels, those that watch and observe and don't make a fuss, those that help in times of need no questions asked - those people need to know that they are loved and valued and important.

She passed her driver's test. My baby girl who is no longer a baby girl has accomplished this milestone. She is happy and proud, but it is time to move on. A smile, a picture for posterity, and a hug from Mom and Dad. Now its back to school for a test, or pit orchestra practice, or...




Sunday, March 5, 2017

Stream of thoughts from this weekend

Though it is not very clear, this is one of my favorite pictures ever: (Photo creds to Ean)


My Mom is back in New Jersey and though that always makes me feel great, I know she must feel torn between being here with me and being in Florida with my Grandmother.
I absolutely LOVE chocolate.
It was nice to talk to Lisa.
It was nice to talk to Sarah.
When Lisa is in town I often mistakenly call her Sarah.
My Aunt Gail also uses a power wheelchair (pwc) and I always had trouble understanding why she banged into things all the time. Now I totally get it. I owe Aunt Gail an apology.
My dogs are crazy.
People who spend time with us at our home with our crazy dogs must REALLY love us. They are that crazy!
I wish that I could eat without getting all these crumbs in my lap. Yes, I do use a napkin.
I had a great dream last night about a preschool I was involved in that was located in the bar in Chestertown that was on the other side of the cemetery. WC friends, what was the name of that bar?
I am really looking forward to going to Handbag Bingo this weekend!
Danny and Tom are saints.
I love cozy long sleeve t-shirts.
My nails look like shit.
I wish that my speech wasn't slowing down.
I am losing my ability to use intonation.
Intonation is one of the keys to humor.
My nephew Sam has a very good sense of humor.
My kids and my niece and nephew (Erin and Sam) get along so well. It's fun to listen in on their conversations.
We have way too much wine in the house.
I think I am going to give a bottle to every person who comes and visits me. Talk about incentive!
I was able to help my Mom with a writing project today. It felt good.
I love to write.
Somehow I will always write.
I will write to the end.
It is weird to think that PALS are actively dying.
I am actively dying.
I am actively living!
I did a lot of living this weekend!
Seeing the ocean this weekend, even if it was only for a few minutes, rejuvenated my soul.
I wonder how many people are Facebook friends with ex-boyfriends/girlfriends.
I just decided that this was okay for me.
It isn't weird.
I'm letting go of what I used to think was weird, and just letting it all be.
I wish the world could read what a CALS (caregiver) wrote on an ALS online support group page yesterday. This woman has such insight. It was truly brilliant.
There are days that I think being a CALS is harder than being a PALS. Today was one of those days.
Adam made me laugh so hard a couple of times this weekend that my stomach hurt, I was snorting, tears were coming from my eyes, and I could do nothing until the laughter passed.
When I laugh like that, Adam laughs.
We were laughing together.
One of the things we laugh about is the ridiculousness of these boots:


These are the monstrosities that take the pressure off my heels. They work but they are so hot and look so insane! I need boots with just a little style. Is that too much to ask?
I am looking forward to this week.
Making plans, moving forward.
Live to Love. Love to Live.

Friday, March 3, 2017

Having an ostomy and ALS - it is getting complicated

Before you continue reading this blog post, you should know that I am going to be talking about poop. And other sensitive material. So if you don't want to read about poop, you might want to skip this one. Its okay. I won't be offended.

Wednesday night my dear friend Laura brought us dinner. Oh my goodness, it was delicious! She made buffalo chicken pasta (for Adam and Ean) and spanikopita pasta (for me and Gillian). The spanikopita pasta was filled with spinach and feta and of course, pasta, three of my favorite things. I ate a lot of it. It was so good!

Well, apparently I can not eat spinach in excess anymore. Who knew? Not me.

The next day I changed my ostomy apparatus as I typically do on Thursday mornings, ate breakfast, and then since I had been up pretty early that morning I lay back in my power wheelchair (pwc), and took a short nap before my Dad picked me up at 11:00 to go food shopping. When my Dad got here I headed to the bathroom one more time before our outing only to find that my bag had leaked. Oh crap! Literally. It appeared that I was no longer able to digest spinach anymore. I informed my Dad of the situation and he helped me to get upstairs to the bathroom with everything I needed to change my ostomy apparatus AGAIN as well as get redressed. I knew this was going to be tricky. Tricky for someone who was able bodied but doubly tricky for someone who doesn't have full strength in their arms, hands, and legs. But I was determined to do this without panicking or getting hysterical. What good would that serve?

I got my pants and underwear off, but when I went to lean over to get a washcloth, my bag exploded. Yup exploded. And the poop went all over the floor, directly into the space that I would need to put my feet in order to get myself pulled together. I uttered a few expletives, covered myself up with a big towel, took a big breath, and called my Dad into help me. And without blinking an eye, he did. He cleaned up the mess, and waited for me outside my bedroom door when I needed him again to help me finish getting dressed. I apologized a few times for putting him in this position, recognizing that this situation was awkward to say the least. I even hesitated to write about this because I didn't want my Dad to feel uncomfortable. But my Dad told me to stop apologizing, that he loves me, and went on his way helping me like this is part of the process. And it is. And although I fretted over the "incident" a bit yesterday, I am now over it. When texting my cousins/sisters this afternoon I said "I've resolved that this is all part of my life now. I've got to find a way every day to let these uncomfortable things go and focus on the positive. Like today I made myself a delicious lunch [no spinach] and got my pants up and down in the bathroom without incident. I know these things seem trivial but to me they are positive accomplishments."  I believe that!

My Dad and I did eventually get to the supermarket yesterday. I wasn't going to let a little poop, an embarrassing situation, and exhaustion get in the way of strolling through the aisles of Wegmans! One positive I discovered during this trip is pre-cut cheddar cheese. I love extra sharp cheddar almost as much as I love drinking through a straw. Cutting chunks of cheese - not on my ability list these days. So I spent the extra dollar and bought pre-cut extra sharp cheddar. Today I was able to open the packaging, take out the cheese, and close the packaging. Oh my! Cheddar cheese never tasted so good! It is the little things that give me pleasure and a strong sense of accomplishment. Like pre-cut cheese.

So living with an ostomy AND living with ALS is getting more and more complicated every day. It takes more adjustments and "tricks" to change my ostomy apparatus on Thursday mornings, but I am still doing it. And every Thursday morning, as I finish up, and I get my tired ass back into my wheelchair, I give myself a little pat on the back (not literally because I can't reach my back anymore). For I have gotten through one more week of doing this task by myself. And I know that I have people beside me when I need a little help.

                                                                      Some of my ostomy supplies


Wednesday, March 1, 2017

Allen



My cousin Allen was different. When I was a child he was this fabulous grown up who like to play board games with us - Sorry was his favorite - or go for walks collecting acorns, telling corny jokes, or telling us stories about his summers at the bungalow or at camp. He wasn't different to us then. He was fun and cool and better than all the other grown ups who just sat around drinking coffee or preparing large amounts of food in small kitchens for our big family gatherings.
And then I got to an age where I realized Allen was different. I don't remember who told me, but at about twelve years old I didn't want to play Sorry anymore, but Allen still did. I didn't want to hear the corny jokes, but Allen wanted to still tell them. I was more interested in listening in on the adult conversations or talking to Marian and Alice about boys. I remember seeing the sadness in Allen's eyes when I said "no thanks" to a game of Sorry. I remember feeling confused about the guilt and sadness I felt in reaction to that interaction.
When I decided that I wanted to write about Allen, I asked his sister Bonnie if Allen had a diagnosis. She said " When Allen was younger, we said retarded which was a clinical term, not stigmatized." She went on to say "Now we say developmental (and/or) intellectual disabilities". I realize that it doesn't matter the words that people would use to describe Allen. I grew up knowing that he was inspiring.
Allen is my father's first cousin. My father was nine years old when Allen was born. He went to school, had his Bar Mitzvah, graduated from high school. During the summers he spent time at a sleep away camp for physically and intellectually disabled youth. Soon after high school Allen began working for McGraw Hill, in the mail room. He worked for them for forty years. Forty years! He loved getting up in the morning and having a purpose, a place to go, where his work and commitment were appreciated and respected.
Allen lived in a semi-independent community (a YAI community), in an apartment with other people with similar abilities, supervised by a person from YAI.  It was my impression that he always had this very full life, of family and friends, work and travel. Lots and lots of travel. He went to exotic locations like Morocco, St. Maarten, the Canary Islands, Italy and so much more - all with his friends and a counselor. He saw more of the world than I ever will, and he relished this part of his life and the independence that allowed him to do these things.
My memories of Allen always include arms spread wide open in anticipation of hugging you at least forty feet before you got to him. A big smile on his face as he hugged you, always reminding me that he was my favorite cousin.  Birthday cards at least one week before my birthday as a child and a phone call or message from him on my birthday and all the Jewish holidays as an adult. Allen was the keeper of all family connections. He could remember who was related to who and their children, and their children's children. He liked to tell stories about his childhood summers spent in the bungalow colony with his parents and the extended family. He remembered the names of all his friends from sleep away camp, and could often fill us in on where they are now. Allen loved going to the movies and watching TV so we often talked about these things when we got together. He was an advocate for the intellectually disabled, so when the movie Tropic Thunder came out in 2008 using the word "retard" or the "R word" in a very derogatory way, Allen was right there in the trenches fighting against the injustice. His dedication to this cause made me braver and more likely to speak up for what I believe in as well.
Allen was at every family gathering. He prided himself in the fact that he was one of only two children that were invited to my parents wedding. When he couldn't get a car ride from his apartment in the city to my childhood home in Roosevelt, he would take the bus. He was going to be there hell or high water. He loved my kids and the kids of my cousins as much as he loved us and he was at all the Bar/Bat Mitzvahs, eating and dancing, hugging and taking pictures, enveloped in all the love of the day. Adam always commented that Allen was the only person who he knew who didn't have any enemies. Allen was pure love.
It was April of 2014 when Allen passed away. In his sleep. Peacefully. The TV on. He was only 61 year old. He had some heart trouble a few years back. I still feel like this important piece of our family puzzle is missing. I looked around the room for him this past day after Thanksgiving when we were all gathered together. He should have been there.
So much of who Allen was inspires me. In preparation for writing this blog piece his sister/my cousin Bonnie sent me words that had been written about Allen from a variety of people in his life. One of the pieces was written by Sarah Baier, Allen's Leisure Trax counselor who accompanied him on his travels around the world. She recalled Allen saying “Sometimes I need help. Sometimes I don’t. I’m not embarrassed to ask for help when I need it, you know what I mean?” These words are so poignant and ring so true to where I am in my life right now. Thank you Allen. I needed that.

If you would like to learn more about Allen and his life achievements, please view the link below:

https://www.yai.org/videos/allen-achieves-his-dreams