Losing her hair was traumatic. When her hair first starting falling out, it was as if she was mourning. There was a psychic or psychological pain that occurred. I think she felt like she was losing a piece of her self, a part of her identity. Her image, one she been looking at in the mirror for decades, was changing, drastically changing. She had long hair since her teens. The transition was scary. As her hair started to look sparse and uneven, it was time to take the big step.

We had a hair cutting party, with Jaime being the designated head shaver. Jaime’s head had been shaved for several years already, being a cancer warrior herself (Jaime has since passed, in Oct. 2016 after a long 5 year battle with breast cancer). And, Jaime had never shaved anyone’s head before, but Emilee was still entirely comfortable with her as the designated shaver.

She had her daughter for moral support, and Carol and Geri here for comic relief and distraction, and additional moral support. We had something to eat first, and Em was doing everything possible to stall. All went smoothly, though, and in spite of some tears, some of which were mine, quietly in the next room, everyone remarked at how nice her head looked. Even though the act itself was traumatic, and it would take a little getting used to, Emilee seemed to be in agreement that she looked pretty good for having lost one of her prized possessions. Still, it hurt my heart. I knew that it cut deeply.

Everyone should try wearing a wig for a day or at least several hours, before going out and buying five different wigs. Yes, five wigs. Of varying hair lengths and colors. To top it all off, she really did not like wearing them, and preferred her self, her natural, bald or short-haired self, as the hair started to grow back. The wigs were warm and got itchy after a while. She was becoming proud of her new look, and less and less self-conscious. She had variety also, bald or bandanna or various other stylish head wear. She also had her sunglasses and her many scarves.

You know, she was cold most of the time. Before cancer (ahhh, now I know what B.C. stands for), she did not like the warm weather, kept the thermostat at 64 winter and summer. We just wore sweatshirts in the house all year long. Now, in the summer the air conditioners were set at 74, and in winter the thermostat was at 70 or more. She was almost always dressed in layers. I had to adjust clothing accordingly, definitely sweating a good part of the time. She would frequently say, “Why are you sweating?”

Sometimes she had a hat and gloves on in the house, especially when she had the chemo pump attached with the 5FU going. Sometimes she just could not get warm. We bought an electric mattress pad, it goes on top of the mattress and under the sheet. Priceless, because it really helped. I highly recommend it. You can put it on prewarm, so when you get into bed, no cold sheets or blankets. Then, she kept it on low most of the time.

So, let’s talk about the initial impact of losing Emilee. I don’t know if I like my phrase, losing Emilee. Sounds like I am going to find her. I am the one feeling lost. Hopefully, she is not lost anywhere, and knows where she is going. I, on the other hand……let’s talk about the first couple of days.

After Emilee had died, the family came, and were in the hospital room with her. We were not rushed, no one was telling us to get going, and the nurse said they would wait until all our things were packed up and were ready to leave, before they moved Emilee. The funeral parlor wouldn’t do anything before 9 o’clock anyway. It was around 6 or 7 a.m. I had my cereal for breakfast and then we packed up the room. I was feeling strange, almost surreal.

I saw one of her favorite doctors on the way out, and told him Emilee has died that morning. He said how sorry he was, and we moved on to our cars. Mind you, we have two wheelchairs piled high with our belongings, with bags hanging from the wheelchair handles, people rolling luggage pieces. There’s five of us all together, carrying, rolling, all that we had amassed over the course of 31 days. Including, a comforter and pillow from home, and a small pantry of dry cereal and soups. We were a sight. A group of nomads. The Israelites crossing the desert. A bunch of homeless people who found a couple of wheel chairs. Just a few of the thoughts crossing my surrealistic state of mind.
We fit all of it into my Kia Soul. My brother followed in his rental car, and he and I headed to my house.

My brother and I were to meet the rest of the family in about an hour and a half at the funeral home, to make arrangements. As I backed into my driveway, which I have done a few hundred or more times, I misjudged the last few feet and heard a cracking or popping noise. I thought I hit the mini maple tree in the front garden, or maybe the corner of the siding which I had dented one or two times before (okay, verrry funny), but when I got out to look, I saw that I hit the electric meter on the side of the house, and knocked it half off, and……I cracked my passenger side tail light. Plus, I noticed that the basement light which is on for one of my plants, was not on.

Great. Can I please go to sleep now and pretend this did not just happen? I will have to deal with it after the funeral home meeting, but on the way (my brother is driving us….lol…I am now not currently safety rated or approved for driving), I call one of my friends who is handy, and explain what happened. I will have to send him pictures, when I get back home. For the moment, the basement level has no electricity, and that of course includes my furnace and the heat for the house, as well as the box freezer. The freezer will stay cold for hours, but the house will start to get cold.

After the funeral home meeting, the funeral is set for Saturday (this was Tuesday, January 31), the coffin is chosen, the down payment is made, and another appointment is set up to meet with the minister on the following day. Once home, I am sending pictures of the electric meter box to my friend. He instructs me to turn off the main breaker to the house. Then, go outside and see if I can pull the meter off and put it back on, being careful to keep it straight and not to twist or push at an angle, push it straight in, push hard. So, I could only push so hard, and the prongs weren’t all connecting. The basement power came back on but the first floor was now out. Laugh or cry?

Now, call the electric company, because I will need them, and a licensed electrician to put humpty dumpty back together again. Amazingly, the electrician came, spoke to the electric company on the phone, and they got here in 30 minutes. Fifteen minutes later, they were all done. The electrician would not take any money from me, saying, in another place, at another time. I was very emotional that day, and his kindness was enough to make me cry.

And, a call to the car dealer for a price on fixing the tail light…..they wanted $560. Are you kidding me??? No wonder why people duct tape them and don’t replace them. Luckily, my son in law looked up the part on the internet, ordered one that was about a third the price of a new Kia manufactured one, and when we got it, installed it in less than 10 minutes. It took him longer to get the part and the tools out of the packaging, than to install the tail light assembly. God bless him.

My brother kept asking me what I needed in the store, since I hadn’t been living in the house for a month. He took me food shopping. A funny phenomenon was occurring that day. Wherever I went, to the supermarket, a local grocery store, wherever we went where there were people….I felt this strange ability to strike up conversations and connect and it was not always surface talk. I almost felt high, floating, somehow able to touch beyond their skin.

We were in a neighborhood market/deli and at the deli counter I apologized to a man a bit older than myself, for possibly being served ahead of him. He remarked how nice of me to say something to him. This started a whole conversation where we talked about pancreatic cancer, and someone in his family having cancer. I felt like my normal boundaries were lowered, I was more vulnerable, and more able to interact with complete strangers.

That day, this occurred several times, talking to someone on line at checkout, getting gas at the gas station, returning something to a department store. It was uncanny. It was what I needed. I felt less alone and isolated, I felt a part of something bigger than myself. For that day, it helped with some of my hurt, some of my bleeding. They did not know that they were helping me cope, I was helping me cope, with Emilee’s death and this enormous sense of loss that I was not even yet able to fully give in to. I had felt loss before but not like this.

Over the next few days, the crying, the sudden onslaught of tears would come in waves, rising….crescendo…..whooosh, a crashing, crushing impact, followed by quiet. The wave would lift me up and drop me down, only to lift me up again. All of a sudden I was back in my house after being in the hospital for a month. But I was the only one here. SHE was not here.

Was she out somewhere and going to come back? My brain couldn’t yet grasp the concept, acknowledge the reality that Emilee was not coming back. She was not coming back in the door later, or going to appear coming out of the bathroom, I couldn’t see her lying in her bed on the back porch from my recliner chair on the porch or from the couch in the adjacent living room. I wasn’t fixing her something from the fridge and warming it up. I wasn’t asking her what she wanted for lunch. I had to put away …….her peanut butter that she kept on her nightstand. And, the fluff that she kept with the peanut butter. I finally had to shut the TV. She had it on 24/7 for distraction. I had left it on the whole time we were in the hospital, to ward off intruders and because I thought she would be coming home.

Those first few days I took to wearing things of hers. I wore one of her scarfs, and one of her pairs of sunglasses. I slept in her bed on the back porch and I still am sleeping there. I put some of her stuffed animals from the hospital in the room with me. About ten days before she died she asked me to bring two of her favorite stuffed animals to the hospital, they are named Winnie, boyd bears. Winnie 1 and Winnie 2. They have been with us a long time (and Winnie 1 is older and really needs a bath). I gave Winnie 1 a bath many years ago, and she thoroughly enjoyed it. Winnie 1 went to counseling with us when we went through some tough times. She was instrumental in helping to pick a counselor. See, if the counselor did not acknowledge Winnie, and ask about her, that counselor was toast…..gone.

Winnie 1 is a very strong character and has very opinionated views and you had better stay on her good side or she would give you some evil hand gestures or kick you in the pants….lol…. I loved talking to Winnie and answering for her. I took Winnie for a walk (I was carrying her of course) in the hospital, waving to the nurses and patients. She is very smart and astute and can sense a person’s nature almost immediately. Yes, some may have questioned my sanity, lol, others got a kick out of it.

So Emilee asked for me to get her a stuffed animal from the gift shop. I got her two. One sang if you pressed her hand…..she sang “I’ll be there, I’ll be there, just call my name, I’ll be there.” It is a bear dressed as a doctor, with a stethoscope around it’s neck. It made Emilee cry. The other was a pink elephant, just because there’s often a pink elephant hanging out in the room that no one is acknowledging.

A few days before Em died, she told me she wanted her granddaughter Brynn, who is 5, to have both Winnies. When Brynn came to the hospital and we told her, she was so excited she didn’t want to leave the hospital without at least one of the Winnies. She wanted to take both, but agreed that Mimi needed to have one for company.

Brynn and I would look out the window of the hospital room and spot people down below (we were on the twelfth floor), and would call them “humans”. We would see how many humans we could spot, and what they were wearing, and if it was a man or a woman, adult or a child.

I am still wearing my wife’s wedding band. When I came across it, I tried it on my fingers and it fit just right on my left pinky, which is nice because it has company right next door on my fourth finger. The two bands are next to each other, and a spin ring that she liked, also on the fourth finger. It has her name, my name, and her two children’s names. Sometimes I wear her denim jacket when I get chilly and am in the house. And I have a handmade copper wire pendant hanging from my neck that she liked.

I am not quite as leaky now as I was the first week or two, but I still am porous and still have holes, still open, still like swiss cheese, still vulnerable, and still feel like my walls have separated at the seams, my tape and spackle have come apart, and I still can reach through the walls and touch other people. Maybe if we all felt this way there would be less wars, less conflict, more compassion.

I walked into Starbuck’s one day and as I pulled into the lot, I parked a little down from the entrance, leaving the handicapped spot open in the front. I watched as a man and two other women walked toward the entrance, and he had a severe walk. Noticing my car’s handicap sticker, he asked me why I didn’t take the spot in front. I said, “I left it for you,” and smiled. We walked inside. I was being spontaneous, but I didn’t know if I had offended him.

Once inside, I decided to take out the two starbuck’s gift cards that have been in my wallet forever. I decided to pay it forward, sort of. I told the trio in front of me, “ I have two gift cards and I don’t know what is on either.” I said, “Pick one”, and turns out that the one they picked only had 84 cents on it. We all laughed, and then I gave them the other one, which paid for theirs and mine. We all had a laugh, and a little conversation, and I knew my Emilee was smiling down on me, saying good job. She loved to, on occasion, at Dunkin Donuts drive through, pay for the person behind us, so when they got to the window they were surprised that they didn’t have to pay.

There are still things that catch me off guard and open me right up. Like when I had to press the dolls hand to remember the song she sang when I was writing this, sometimes a smell, a coffee cup she used, something of hers I come across in the car, certain songs. The prayer, by Celine Dion, which I have sung to her a couple of times, Come to Me, also by Celine Dion, Lullabye (goodnight, my angel) originally by Billy Joel but also performed by Celine, as well as Leann Rhymes, and the best one by a group called The Idea of North .

Please…..go….find it on U-tube, and have tissues handy. Trust me, have tissues handy. Write out the words and sing along with it and have a cry fest. Especially, the end of the song……”and if you sing this lullabye…….then in your heart…..there will always be a part, of me…………..someday we’ll all be gone, but lullabyes go on and on, ……..they never die, that’s how you and I ……will be”
I have listened to it dozens of times this last week or two, and it still moves me. Let me know if it speaks to your hearts as well.

Okay, I apologize for the length of this…like the lullabye…. I go on and on…but….this is my therapy for now….this is me finding me again….this is me finding my voice….finding my way….. living my grief…..finding my freedom…..accepting being swiss cheese and all the waves…..all of it…..finding life…..and part of me is scared, and wicked lost at times, and feeling guilty for feeling good, and….. “in the arms of the angels…..may you ..find……some comfort here”

Not done yet….

Joy….. god bless my son and daughter in law who invited me to meet them at the Bronx Zoo this last Sunday. I had to give myself a kick (thanks Winnie) to go. I haven’t been to the zoo in decades. The seals, love the seals, urrrr, urrrrrr, urrrrr. My 20 month old granddaughter was just wide eyed….the birds….the giraffes…..the carousel….. I loved it…… starting to feel alive…..deeep breath…… grief is not a constant, and I am doing no disservice to her memory by not staying somber all the time….this is a hard one to juggle……but this is a process…

..and I am flying by the seat of my pants….. I am in it….. like my flying dream a week before Emilee died……seated in the train, the roof of the train car disappeared and I floated up out of my seat…………above the train…..keeping up with it…..but going higher than the clouds….wondering how long I could stay up and how high and how fast I could go…… no fear, just wonder and joy at being able to escape gravity higher and higher, and then slowly coming down, even with the train, keeping pace with it……wondering how I was going to get back into the train…

and then the train was no longer there, and I was in a classroom, and we were discussing the experience and I was asking if anyone had enjoyed the ride and experienced the exhilaration like I did…… and they all looked at me with somewhat of a blank, emotionless face…..and I am like…..are you kidding me?….that was an incredible trip….intense lightness and freedom and joy…… and then I woke up…
and I can’t explain the deep, deep melancholy that I felt…. There was joy…bliss.. but no one shared it with me….. and…..s**t …I am crying at the moment because I never realized what that dream meant to me until right this moment…no one shared it with me….how that brought me down…. Isn’t it so much better when someone feels what you feel….and you both have that shared connection…..….

And so ….. maybe that is why I write….because I never know what I may discover…… and that is joy that I cannot describe…. Wow….that was a three tissue moment…..lol…….okay….. hope you enjoyed that ride…. With me….that never happened to me before….going back and reliving a dream and really feeling that I felt what it meant in my body….embodied…as I was writing about it .

thanks for listening to my thoughts