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. 

"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.