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When You Love Someone Who Is Gravely Ill

5/20/2016

27 Comments

 
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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. 
27 Comments
Lynda Smith
5/20/2016 03:11:51 pm

So sorry about Peter- prayers for you - my husband is sick now and I agree with your list of points- please hang in!

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Michelle Trimper link
5/20/2016 05:33:28 pm

Thank you! Sorry you are experiencing this too. Big hugs!

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Robin
5/20/2016 03:31:36 pm

Thank you for sharing this. Xoxoxo If there is anything I could possibly help you with I hope you will let me know.

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Michelle Trimper link
5/20/2016 05:34:17 pm

Thank you!!

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Christina Abt link
5/20/2016 03:47:37 pm

Beautifully crafted, Michelle. The hardest part is accepting what life has planned, that we never imagined. Sounds as if you and Peter are figuring out how to thumb your nose at life and make your own special time together, as best you can.
Prayers for you and Peter.

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Michelle Trimper link
5/20/2016 05:35:02 pm

Thank you!!

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Peter Kelleher
5/20/2016 04:32:21 pm

Pretty much that's it.

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Michelle Trimper link
5/20/2016 05:35:45 pm

<3 !!!

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Colleen
5/20/2016 04:41:22 pm

Michelle, I am so sorry to hear this sad news. Please call me at the office Monday to discuss. Hopefully, I can help. Colleen

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Michelle Trimper link
5/20/2016 05:36:35 pm

Thank You!!!

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Beth Mellas
5/20/2016 04:54:43 pm

You are obviously a blessing from God.

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Michelle Trimper link
5/20/2016 05:37:24 pm

Why thank you! xoxoxoxo

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Kathy Tolsma
5/20/2016 05:13:25 pm

Thank you for sharing and know that you and Peter will be in my thoughts and prayers. This may have been so difficult to write, but also helpful in the process of it all. If there is anything that I can do, please let me know.<3

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Michelle Trimper link
5/20/2016 05:38:14 pm

Thank you Kathy!

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Stephanie Maier
5/20/2016 05:50:22 pm

You are both in my prayers. Thank you for sharing...

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Michelle Trimper link
5/20/2016 06:03:33 pm

Thank you! That means a lot to both of us! xoxoxoxo

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Matt Lerner
5/20/2016 06:03:22 pm

Thank you for sharing. Keep strong with everything. I couldn't stand not having The Pete Kelleher in my world. I'm glad he intends to stay around for a long time.

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Michelle Trimper link
5/20/2016 06:17:22 pm

Friends like you are a lot of why he wants to kick this things a^^ and win at life. You are a great friend, and I know that he appreciates you! xoxo

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Marilea Mirek
5/20/2016 07:11:44 pm

All of the !!!!!!!'s and rainbow unicorns to comfort you. Please do not hesitate to call on me if you need anything, and until then, unlimited hugs to both of you. <3
P.S. before I submitted this, it said "There are too many exlamation points in your comment" What is that? No such thing! lol.

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Michelle Trimper link
5/21/2016 08:03:17 am

Thank you!!!!!

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Amy Gamet link
5/21/2016 04:54:16 am

Sorry to hear you've been sick, Pete, and about your brother's passing. Better times are ahead. If I get hit by a bus you can totally have my liver (though I think it might be a little "broken in").

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Michelle Trimper link
5/21/2016 08:04:50 am

HI Amy:

I will pass along your greetings and wishes! Im sure Peter will be happy to hear from you! :)

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Jerry DelValle
5/21/2016 07:14:17 am

I'm so glad Pete has you in his life. We haven't met yet, but I can tell how much you care for him. I know my stubborn friend Pete isn't going to let this get him. There's no way that will happen.

If you need anything let me know!

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Michelle Trimper link
5/21/2016 08:11:40 am

Thank you Jerry! Ive heard many funny stories about you. I cant wait to meet you.
Peter will be ok. We are just going to have to go through a lot of garbage to get there I guess. We will get through it, and I will make sure that he gets in some great moments of beauty, fun, and some laughs. xoxox

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Pat and Bob OKane
5/21/2016 07:39:31 am

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Donna DiPasquale
5/21/2016 08:33:39 am

Wow. I'm so glad you posted this. I've been wondering what was going on, but didn't want to pry. I have you in my thoughts and prayers every single day. Please message or text me sometime. I'd love to walk at the river or get lunch. No words needed, we can walk quietly or chat away whatever you feel like. Just know I am here (and live very close). I can be over in 5 minutes even if you just need a hug.

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Michelle Trimper link
5/25/2016 08:54:35 am

Thanks Lady D! Id love to see you! xoxoxoxox

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