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. 

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.  

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. 

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. 

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. 

"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. 

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. 

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. 

The winter of 2015-2016 has been a tough one for me in terms of exercise. It seemed like I was fighting a persistent upper respiratory infection that fell madly and obsessively in love with my body. And I got a puppy. If you have every had a puppy, you know that they take a lot of time and attention. So between taking care of her and being sick, and the normal life distractions I found myself out of shape. And I didn't like it very much. At all.
I wracked my brain to come up with a way I could get in an hour a day of exercise and still fit in my dog walk. The dog walk isn't really exercise, because with distractions, etc. I don't get my heart rate up high enough to make this cardio that means anything. I thought about running with her at the beginning of winter, but icy sidewalks and a puppy that is still learning leash manners are a recipe for disaster. I kind of put it in the back of mind and forgot about it. I found ways for her to get exercise indoors, and didn't get very much at all myself. I missed a lot of my dance classes from being sick, and at some point I got so far behind that I had no choice but to table the classes until next fall. 
Scrolling through Facebook one morning, inspirational powerlifting champ, and fellow dog lover Brooke Fineis had posted this article about a man who came back to life and health with the help of his dog. He lost 140 lbs. He went from sedentary to the picture of health, and regularly runs marathons now. Fortunately, I don't have so far to go, but I cried reading the article and realized I have everything that I need right in my house.
​I like setting goals, so I decided to start with training for a 5K. A quick internet search lead me to this plan: Coach Jenny's Doggy 5K Run Plan.I loved the way that the plan was set up in intervals to get you and your dog up to speed in a gradual and logically building pattern. All of this on Sunday night. Monday we started. 

Day One: I got home from work, and was eager to get begin. I couldn't find my sports watch that has an interval timer on it. I haven't seen it since I moved, so it might never reappear. I tried to figure out setting my phone for the intervals but it wasn't cooperating. I knew I had very limited time open in my evening, so I did something that will probably make you laugh. I counted out the intervals the old fashioned way: one-one-thousand, two-one-thousand, etc. I am sure this sounds ridiculous, but you know what, nothing was stopping me from starting on Monday. When life throws me curves I improvise. 
My plan to run by the water was quickly foiled by the chilly air, but we took a pretty route through neighborhoods and past parks. I found out that my dog, KD, does wonderfully on the leash with the jog. She seems to love the pace, and is almost unaffected by the usual distractions that challenge our walks: other dogs, kids playing, people. This was so much fun. We seemed to be in sync. She was even better than she is in our usual walks in the walking intervals that followed the jogs. I'm sure that was a combination of tiring her out a bit and her understanding pacing. I used the command, "walk, " for the walking parts and, "jog," for the jogging or running parts. We walked for another half hour or so after the formal program because we are both used to about an hour or so for our walks. 

Day Two: I woke up feeling great and not even a bit sore. I felt my mood at work was lifted from the experience of the night before. I couldn't wait to get home and see how our Day Two was going to go. When I got home I found a simple interval timing app for my phone that had sounds you could assign to designate intervals. Much better than, "one-one thousand...etc." I didn't let the light rain deter me even a tiny bit. As I walked KD to "go to the bathroom," she started the typical pulling and distracted behavior that I have been working to train out of her. Once we started the intervals, though, she was all business. She followed commands like a champ, and it was another great experience. We finished up just as the serious rain started. We stopped in front of the statue of St Francis, and I said a little prayer of thanks. I am not sure whether she did, but she sure seemed calm and happy out in the pouring rain. We headed home feeling good, and her behavior for the entire evening was extra good. I think we are on to something pretty darned cool here.