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.
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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