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" I Have No Idea What To Say," or, " I Know Exactly How You Feel." : How To Talk to Someone in Extreme Grief

8/4/2016

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The truth of it is, I cannot offer advice on how to talk to anyone other than myself. There are so many generalized grief articles out there. The bottom line is, we are all different, and want different things in terms of support. 

Ive always had an amazing family and friend support system. Im very blessed. When I recently went to the psychiatrist, he told me that I am set up to eventually have a pretty amazing life again. It's hard to believe now, but I am fully aware of the many blessings of family, friends, job, even the kindness of strangers that I have always enjoyed. 
Anyway, here are my suggestions for dealing with me, suggestions or maybe explanations. 

1) Just tell me you are sorry for what I am going through. Dont beat yourself up about a huge, life-changing speech. Its not only unnecessary, I don't need or want it.
 
2) If you say something dumb, forgive yourself. I have chosen to think that at least during this point in my life, everybody means well. It's all ok. We all feel awkward. I know it's meant with love. 

3) Yes, you can talk about him. Share stories, ask me about mine. Nothing I love to talk or hear about more. Seriously. It makes me feel closer to him. And God, do I ever miss him. 
 
4) No, hearing about the death of your loved one doesnt help me. It only makes me sadder.
 
5) Yes, offer to come visit or do something. There is a very odd list of things that I am up for right now because my head is not on straight. Don't be offended if I can't do your thing. DO suggest it. It might be just what I need!! And also:Ask me what I CAN do.  Because I do want to see you. 

6) Yes, for once in my life I can and will accept help. So If you are offering help with something, i will probably take you up on it. 

7) I love all of you. 

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The Story of Us Part Four:The Immediate Aftermath of the Loss of You

7/24/2016

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I wake up every morning happy. It takes me a few seconds to remember that you are gone and that you are never coming back.
I cry.
I sometimes ask God why.
I talk to you up in heaven like you are here and ask you to come back. 
 I get dressed. I take KD Puppy out. Thank God for her. 
Then I go to work, or I go and do whatever plans Ive made, trying to hold myself together the best that I can.
I have pockets of a few minutes each day where its just normal, not grieving me. 
The rest of the day, I spend thinking about how you would have loved this little meal, this little conversation. How even if we were not together, which was rare, I would have enjoyed telling you about it later.
I hate being alone.
I hate being with other people.
I hate being away from home.
I hate being home. 
Each day I hope that tomorrow wont be quite as bad.
I go to bed early, hoping that I can conjure you up in sleep. I hug my pillows and blankets like I used to hug you all night. 
I fall asleep from exhaustion. 
​I wake up every morning happy, It takes me a few seconds to remember that you are gone and that you are never coming back.  

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The Story Of Us Part Three: The First Time I Was Sick

7/22/2016

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The first time during our relationship that I was sick, I was sick to my stomach. Peter rubbed my back the whole time, sensing that it was extra-horrible for me. (It was , I had a number of years fighting stomach issues) I mean, he rubbed my back while I was puking. And then he brushed my hair to calm me. And then he rubbed my back when I finally laid down to let me know he was there. One of the most loving and special moments I have ever experienced. 
If at any time this becomes TMI, just scroll by. At this point, Im writing for Peter and for myself. If it makes you smile, keep reading stuff that I write. If not, I get it. 
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The Story Of Us Part Two: MAGIC. Not Quite At the Beginning, But Fairly Early On. 

7/21/2016

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Peter was visiting. He still lived in Binghamton. We were in my house. The house that I was in throughout my marriage that had ended a while back. It was a happy house, but it had become a sad house. There is no other way to really explain it. 
At that time I was hoping to still be able to afford the house and make it a happy place again. 
So, prior to Peter's visit I had gotten this idea about stringing some solar lights in the backyard. I loved sitting out back, and thought that would be a lovely touch out there. We went to the store together, picking out a couple of beautiful lights that looked like flowers, and then some others to string around the deck and the bushes. It was fun shopping with him. He had a way of making everything magical. In the beginning, I used to think that he was just trying trying to entertain me to ease my broken heart. I later learned, no, that's just Peter. 
Anyway, we picked up a few things, and he planned to put these things up while I was at work on that Saturday. I came home to find :
He had my favorite music playing.
He had a beautiful table set.
He had my favorite wine chilling. 
A delicious dinner in the oven. 
And then. He brought me outside, first putting his hands over my eyes. He removed his hands to show me the most beautiful backyard I had ever seen.My entire backyard was alive with lights. Lights around the trees, bushes. He put up a candle chandelier that I had in storage, hung it from a big tree and had candles burning from it. He had gone back and bought out the store in wrapping lights, and picked up more flower lights that fit in with the scheme we had planned. 
This will always be one of the most special memories and one of the most romantic nights of my life. 
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The Story of Us, Part One: If You Don't Mind, Id Like To Start at the Middle.

7/15/2016

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It was November of 2014 when Peter and I moved in to Chateau PM, our happy, beautiful lofty little place in the City of Tonawanda. It was one of the coldest winters in recorded history, but we didn't mind that so much. 
We carefully shopped for and curated our little place with items old and new, thrift and antique shopping, and filling in with eclectic little finds along the way. Artwork, furniture, or measuring cups, we picked it our together and found its place in our little home. 
We made great warm and beautiful dinners together. Well, mostly he cooked, and I set a beautiful table, picked the music, and cleaned up. We both felt like we won the lottery as we talked for hours on end about everything and nothing, many times late in to the night. 
On the snowiest nights we would just start walking and see what groovy little places we would find in our charming little neighborhood. Even in the winter, the City Of Tonawanda has some amazing scenic water views. It also has an eclectic mix of restaurants, shops, and lots of fun to be discovered if you only look for it. 
Some nights we might stumble upon and old pub filled with characters, or a great band playing. Some nights we would eat in beautiful restaurants, often getting to know the owners or other diners. 
We would walk home enjoying the softly falling snow and the moon and the water views. Usually holding hands and talking about our experiences of that day or night. 
We had friends over for great parties, brunches, small dinners. We both loved when our friends would play music on our piano and or guitar. A few times we even sat down and jammed (poorly) together. We had a blast. 
When the spring came we planted vegetables and flowers in pots , and got involved in our community garden. We went to hear local and national bands. We went to see show and plays. We had picnics, and rode our bikes to watch the sunset almost every night. Then we would sit on our little stoop porch among the plants and flowers and look up at the stars, sometimes sipping wine and always sharing stories.We talked about books and movies and politics and told the stories or our lives. We made all kinds of plans for the future.  
We enjoyed great times with our family, friends, and even strangers. 
Our home was bright with color and with spirit. We had figured it out. We felt almost like we were getting away with something that others hadnt figured out. We were madly and crazy in love. We thought that we had discovered the secrets of the Universe.  
This is "The Middle," and all I feel like talking about today. There is much more to our story, including our fun and crazy start, our incredibly strong love through all kinds of obstacles we could not have foreseen, and where that led us and what it taught us. 
This is what I felt like thinking about and sharing today. 
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"How Can I Help You," or "Give Us Your Nonsense," (Or: "When You Love Someone Who Is Gravely Ill Pt Three")

6/20/2016

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"Let me know if you need anything." Or "How can I help you?" If you have been following along, you know that my beloved +beautifully/awesomely crazy boyfriend is sick. You can read more about that here. And here. 

I am lucky and blessed enough that I get to hear these questions often. I am never sure quite what to say. 

The other day, I was giving this some thought. I sure could use some help. This time in our lives has made me understand that I do need TheHumans, and that I cant do everything myself. But what? What would help me, and more importantly, what would help Peter? So I came up with a list in my head. And here it is:

1) Arrange a visit. We are both highly social creatures. And suddenly, we can rarely leave our little loft. We would love you to arrange a time to come by. Or, arrange an outing if Peter is up to it that day. He loves sitting at the river, at Niawanda Park,which is just a couple of blocks from our home. Fishing, picnicking, or just sitting there. Its one of the most beautiful places in the word. If hes not up to that, sit on our front stoop or sit by his bed and just talk to him. Play a game. Tell jokes. His health and spirits go up exponentially when we have a visitor. 

2) Offer to run an errand. It seems that every day is an endless sea of errands. Pile that on with doctors' appointments, and it is quite a marathon to get everything we need every day. Whether it is light bulbs, toilet paper, food, batteries, it is always something. Offer to take our list and pick the stuff up. We will give you the $. Its the time we cant spare. 
Every day of the week. 

3)Call him. Talk to him on the phone. Tell him about your life, ask him about his. 

4) And, piggybacking on #3:  This is what we figured out that we have been missing most of all. Tell us your stories. Ask us our advice. Your trivial crap about your day. You are wondering whether or not to go on that second date. You are annoyed with your spouse or your coworker. TELL US YOUR CRAP. Nobody tells us anything any more. We want to hear your funny silly stories, your petty little annoyances. Of course, we appreciate people asking about Peter's health. But we need another thing to talk about. Give us your nonsense. We miss the hell out of it.

5) Pray for strength and grace for both of us.  

PS: Sign up as an organ donor. Do not tell me that you are not an organ donor and expect a pleasant conversation from me. 

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When You Love Someone Who Is Gravely Ill Chapter Two

5/29/2016

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If you know me well, or you read my blog, you might know that my beloved boyfriend is bravely and 'kickassingly' fighting liver disease. The latest news from the doctors is that he is doing much better than they expected and is continuing to defy medical logic +/or common sense. This is partially because he actually does what he is supposed to do. He takes his medication, he goes to his medical appointments. He is kind and appreciative to every medical professional who crosses his path. He gets his blood drawn when he feels like there is nothing left to give. And basically, he is a tough, stubborn, kickass, belligerent Irishman. Or he would not be with us. Period. 
You might think that writing about this would be depressing. And don't get me wrong, there are depressing moments. There are moments when you seriously doubt your own capacity for strength, and his. Its not the easiest thing in the world. 
On the other hand, you start to have these profound moments. Special things that happen the seem to mean more to because of all that is going on. A rainbow follows you to one of your best friend's housewarming party, just when you really needed a boost badly. Heck, the fact that he felt well enough to go for a bit was a huge deal. If you saw that rainbow on a regular day, you'd think, "gee, that is lovely." Vs., "wow that has to be a sign of beautiful things to come." 
I've always done a pretty good job of appreciating small beautiful moments. I thank my parents for that. That is not a new skill for me. At the same time, is kind of like everything is heightened now. The good, the bad, and the ugly. A long soft backrub from someone so sick seems like a beautiful gift. Other days,he falls on the ground and it feels very ugly and frightening. He says, "I love you," with such intensity and sincerity that it goes through my soul. Minutes later:A brilliant man, he loses his place in the conversation and looks scared and confused. It feels like a constant rollercoaster of beauty and pain. 
Peter has about 4 and 1/2 more months before he is eligible to even begin the wait for a liver transplant. Then its about matching and other complicated things like that. He is working very hard at making sure that he does everything within his power to make sure that he is ready, willing , and able when the time comes. It is something to watch and admire, and learn from. Focus. Strength. And he still manages to find moments of beauty for us along the way. 
Friends and family, well we both draw from their amazing strength and support. And even strangers, like our nurses, blow us away with their many beautiful kindnesses. We have acquaintances offering us support in ways I have been incredibly inspired by, and learned from. Ive always loved finding ways to help other people. Now, I look at each one of these people along the way as a lesson in how I can be a better person going forward. No, I wasn't a big jerk or something before all of this. I was always a pretty nice person. But there is nice, and then there is putting your life's focus on making this world a better place in any small way possible. 
I do cry. Ive probably cried more in the last couple of months than I have in my entire life.  I do say directly to God, "what the eff could I have possibly done to deserve this?" And then I snap out of it and find my way.
Today we went to the water and spent time with good friends. We felt the great water breeze. Enjoyed the beauty of where we live and being together. And Peter, looking at the water, said, for the 20th time this month, " We live in a magical place."  Maybe we do. 



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When You Love Someone Who Is Gravely Ill

5/20/2016

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I have been in a relationship with my boyfriend for somewhere between two and three years. Nobody really knows exactly how long. We came together as: we were just supposed to be fun, friends,no-big-deal thing. At some point we realized we never had enough time to talk, even if we talked all night. And we had pretty much ten lifetimes of adventures that we wanted to do together. Eventually we moved in together. For about two years, we had the best relationship that we, or anybody else, could imagine. Every day an adventure. Talk every little thing over. Find new and amazing things to do every single day. We made our friends sick with how happy we were. We both brought life, joy, and color to each others' lives. 
A few months ago, Peter started acting differently than the person I knew. He didn't want to do anything, vs up for anything. Where he used to be a huge sweetheart, he was mean. I don't mean abusively mean, I mean: "here was this amazing guy, and now hes kind of a dink." All he wanted to do was sit on the couch. He didnt want to have our talks. He wanted to be alone. Period.  Where we had beautiful meals together every night, he didn't want to sit with me and eat. Eventually, he didn't even want to eat. I very seriously pondered moving on. I had no idea that he was sick until it was impossible to ignore. I am so glad that I didn't "move on!"
Once I finally realized that he was sick,it took my every trick that I had in my book to get him to the hospital. Jaundiced, exhausted, and as far as the doctors told us, close to death, he insisted on going to work for a solid week after everyone around him knew that he was sick. Stubborn Irishman. 
When we finally got to the hospital, the doctors said that he very nearly died and that he, by their numbers, should not be alive. They worked to stabilize him. Three times, they told me to say goodbye to him. Three times, I said, " thank you for telling me all of the possibilities. " And then I told him, in his ear, " you are not ready to go yet. If you see a white light, run the other way. If you see Danny, ( his brother who died recently of a similar disease) tell him you cant be with him yet. Run, and fight, and with all of your strength, go the other way. Be with your family a while. Be with me. Be with Jessica (his niece and goddaughter.) " I did tell the one doctor that kept telling me that he was going to die to eff off. Not much of a swearer, but I did that. I did. 
Peter came out of the hospital with the knowledge that he needs a liver transplant. Two days out of the hospital, he checked in to his employer. He was up to doing light duty. They fired him. That is all that I will say about that. 
We spend our days making sure that he is OK. My mother hangs with him when I am at work.  Unemployment, disability, we have received $0 so far. He was fired on 4/25. His copays keep coming in. We still have normal living expenses, ie: rent, utilities, food, copays for all of his stuff. I am not writing this to complain about money. We have a huge support system of our families if we need it. Not the point. Two, above average intelligence humans navigating the system of insurance and the medical community=at our wits end. 
As far as Peter goes, he is brave. He fights hard every day to get himself better. He has moments when he is confused. He wakes up in the middle of most nights in states ranging from foggy to frighteningly confused. We are told that this is standard with his disease. He comes out of confusion, every single time, plotting about something nice that he can do for a family member or friend. He adores his family and wants to reconnect with his best friends in a more meaningful way. That is his focus. He loves his plants, he loves our dog. He wants to leave his mark on this planet for doing good. He quotes St Francis; "make me an instrument of your peace," every day. 
Where our days were filled with bikerides, walks, going to hear endless bands, culinary adventures, etc., our life is making sure that he is ok and that we cover all of our bases medically, nutritionally, and to make sure he is happy and entertained a bit. Days off are doctors' appointments. He has an entire team looking after him. 
Lessons learned: 
1) Its tough to be this sick. Its horrible.
2) Its tough to watch somebody be this sick. Its horrible. 
3) Its tough to navigate the medical community, insurance companies, and help for 'displaced' workers
4) Its all kind of horrible. I do not recommend it. 
At the same time:
1)We appreciate small moments of beauty, like a meal prepared and eaten, or a sunset, or a doggy cuddle. We REALLY appreciate my mother. BIGTIME. 
2)We have seen unbelievable help and support from our friends and families. We have both become closer to the closest people in our lives. 
3) We both better understand what our friends who have survived grave illnesses have faced and can better support them. 
4) There are beautiful moments where he feels strong. In those moments, he is at his best. Smart, imaginative, loving, and wanting to save the world. Beautiful. 
I didnt think that I would write about this. It seemed too grave for a very long time. I have decided that we are not the first, wont be the last people who are facing this. Others facing similar circumstances might need a kindred spirit in writing or in life. 
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A Midwinter's Day Off

2/18/2016

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In a rare moment of unplanned splendor, I made no plans for my day off. Except, I was planning on going to this estate sale and walking my dog.
I couldn't find the information for the estate sale on my computer, and only remembered that it was on Goundry. Well, thats easy. Goundry isnt that long of a street, Ill just drive on Goundry. I saw all the cars, , and parked mine. In an odd twist of fate I had parked in front of my first ever apartment! This was a beautiful place in an old mansion.It looks pretty much the same! I lived on the third floor. It had a purple clawfoot bathtub and bright yellow cupboards back then. Made me think of the old Barenaked Ladies song, "The Old Apartment. "
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So I walked the couple of blocks to the estate sale, only to find out there was a line out in the cold. I have been to many estate sales, but I have apparently never been there on the first day when they open. Anyway, I decided to wait. I quickly made friends with my "line-mates" and it wasn't so bad. 
When I saw the ad for the estate sale, I was drawn in by the great photos of the "mother-load" of vintage finds. What I did not anticipate: seeing how much 'stuff' this woman had accumulated made me want to purge, not purchase. Still. I enjoyed walking around, seeing the beautiful clothes, decor, and housewares. I decided that would be my entertainment whether I purchased anything or not. 
Turns out, I found a few cool things and bought them:

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This ring was my cup of tea and coffee. Yes, it went home on my finger. 
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This painting. How could I not buy this?
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This vintage tablecloth in kind of a Beverly HIlls Hotel vibe. 
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And, finally, this ashtray. No I do not smoke. I love the look of this, the beautiful ballerina,how she is sitting at the edge of the pool. I feel like I can use it for jewelry at my bedside or something else fun. 

Next, I stopped at Squires for lunch. Squires is a place that looks like you could have walked in during the 1960s and it would not have been all that different. The food is simple, as my dad would say, "gin mill" food. Still, they have a veggie burger there. And the bartender, Elaine, builds a beautiful cocktail and is lovely. 

I stopped to see my girls, Julie Ann and Meagan, at one of my favorite haunts, Cats Like Us, and got the socks that I had been coveting: Raining Cats and Dogs socks!
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I then came home, and walked my beautiful pup around a winter wonderland. The water views in the City of Tonawanda and North Tonawanda are just incredible all year 'round.

And then came home to read more of the book I have been reading, and am completely fascinated with,and prepare for a fun evening with my love. 
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The day isn't even half over, and I have seized it. Clearly, I need to "not make any plans," more often! 
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We Use the Good China

1/25/2016

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My grandmother died a long time ago. A really long time ago. I was blessed with inheriting her beautiful china set. Its a full set and includes dessert dishes and teacups. It is in pink and yellow, and trimmed in gold. I love the idea of my aunts and uncles and all of our extended family having used these beautiful dishes over the years. It makes me feel connected to my grandparents and others who have passed. Family china. It means so much to me. And happens to be in exactly my taste, which is a nice bonus. 
When my grandmother died, I was too young to be hosting any dinners, and until fairly recently, I wasn't much of a cook. The china was packed and stored in my basement in various apartments until I bought my house. "OK. Now I get to use the china!" 
Except I didn't. We kept the good silverware, china, and special glasses put away for just the right occasion. For the fifteen years that I lived in that house, I never used it once. 
Peter came in to my life at the end of my divorce. I was sorting out my house, and I had a big job of downsizing from a four bedroom house to a two bedroom loft. He helped me go through everything and helped me with some difficult decisions about what to keep. So, one night, going through boxes, we came across the china. After ten minutes of me rambling on about how much I loved it and what it meant to me, Peter said, "lets use this tonight for dinner." 
It was like being set free! Out came the crystal glasses, the amazing silverware. A hand-painted water pitcher and glasses from Italy. Flowers and candles on the table. I don't remember what we ate that night, but I remember sitting there thinking, "all of these years. These exquisite things sat in boxes in the dark. " 
We pledged there and then that we would use all of the beautiful things, all of the time. Every day. We make a simple meal beautiful. We don't have to wait for a special Veuve Cliquot night to use the good champagne glasses. Korbel Brut Rose tastes just lovely out of the same glass. We don't wait for lobster or caviar to use the dishes. A nice veggie stir-fry looks and tastes fantastic with the dishes and silver. 
The day that my mother told us that all of these things could go in the dishwasher was like icing on the cake! And you know what, if something breaks, so what. At least it will have been used and loved. And not wrapped in a box in the dark.  
So wear that special dress, carry that special handbag. Even if its just to the movies. Or make an occasion, go to the Giacomo , and order a special glass of wine and look at the spectacular view of the falls. Or take those special plates and a lovely tablecloth and have a beautiful dessert picnic at the park by the water. 
We dont know how many years that we have on this earth,but I can assure you, we will spend them making each day as special as possible. We use the good china. 

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