Now that I was all set up with a brand new primary care doctor that had no grand plans of putting me in a nursing home or trying to kill me, I was able to start getting excited about my birthday. Jeff and I were told that we didn’t have to do anything to prepare for it.
“I’ve got it all under control, you shouldn’t have to plan your own party,” Jackie had insisted while she was setting up all of my IV and tube feeding bags on July first, the day before my birthday.
“But its going to cost money, I can’t have you spend all of that money on me,” I insisted.
“Nan is helping with the money, so is Jay, and so is Greg, because we’re all chipping in its barely costing us individually anything,” she insisted. “I can’t let you and Jeff spend your own money on your own birthday. Anyway, it’s nothing too fancy, just a little bit of food and drinks, some decorations, and a few presents, that’s all. I don’t want you to get too excited and think it’s a whole big thing.”
“I’m sure whatever it’s going to be, we’ll have a great time, and I know it’s not much, I just feel bad having you spend anything,” I explained.
“Becca, I’ve been working for you since February, I’ve gotten really close to you, I see you more than I see anyone else in my life pretty much. I can’t let your birthday go by without doing something for you.” She explained. “Plus, Jeff too, I mean as much of a pain to me as he is, the guy is pretty awesome, I see how good he is to you, and I need to do something for him too.”
“You’re so sweet Jackie,” I told her.
“Well, you are too Becca,” she said. “I see what you go through on a daily basis, all of the pain and debilitating nausea and how much fight it takes you just to do what other people take for granted every day, and yet you still get up every day and do it. Not only that, but then you go ahead and do even more than the average person can accomplish. You graduate college summa cum laude with a BA in writing and a GPA of 3.98. I am so impressed, but you just make it look like nothing. Even when you feel miserable you don’t take it out on the people around you, you still treat everyone so nicely. I don’t know if I could do that if I were in your shoes.”
“I just don’t think about it,” I explained. “I just know I have to take things moment by moment to get through it, and sometimes get a little creative when things get really bad, but give up isn’t a choice. I have too much I still need to do and too many people I care about that would hurt too bad if I gave up.”
“I think I would just get fed up with it all and take it out on everyone around me,” Jackie said.
“I just keep treating people the way they deserve to be treated. How I feel should have no standing on the way I treat them.”
“You’re amazing Becca,” Jackie told me. ‘This is why you deserve this birthday party, and you love Jeff, so he’s along for the ride.”
“Jeff is really amazing too,” I explained. “Jeff also goes through hell. Jeff had a difficult life. Growing up his parents fought a lot, and that was hard on him. His mom was an amazing mom to him and did everything she could, but his dad was an alcoholic with a temper. Jeff turned to alcohol to protect himself from that. He got drunk for the first time at age ten off his father’s keg alongside his friend Ellen who was also ten. From then on, he was addicted to alcohol. It was the only way he knew how to soothe himself. As he got older, he went to parties and was the life of the party. Everyone thought he was so cool and funny and entertaining when he drank which only reinforced his drinking more, but then into young adulthood he began needing to drink constantly to function. He drank Molson Ice.
He said he originally drank it because no one else drank it so it was a way to have more beer for himself. But then everyone else would finish their own beers and want his, so that plan stopped working, but it had already become his favorite beer.
Jeff got with Barb, his girlfriend that he got serious with after high school. She was the same girl that used to babysit his little sisters when he was in high school. He used to let the air out of her bicycle tires when she was babysitting so that she would have to stay longer once his parents got home and then he could hang out with her. By the time he was with her, he needed a 12 pack of Molson Ice a day, just to function like a normal human being. Barb was drinking heavily as well. They spent a whole lot of time together in bars.
Jeff finally slowed down on his drinking when his father became ill. He ended up moving in with his father and one day his father had a stroke. Immediately Jeff knew something was wrong with him when his dad, who had been washing dishes at the sink, suddenly turned to face Jeff with half of his face drooping, guttural sounds coming out his mouth, and terror in his eyes. Jeff got his dad lying down on the floor and called 911 and then gathered up his dad’s wallet and ID and tucked it into his dad’s pants so that their roommate Rick couldn’t steal anything from his dad while his dad was in the hospital. Then Jeff sat with his dad terrified but trying to be calm for him until the ambulance arrived to bring him to the hospital where they confirmed his dad had definitely had a stroke.
When Jeff’s dad finally came home from the hospital Jeff slowed down on the drinking to take care of his sick father. He tried to nurse him back to health and did everything he possibly could to care for him. But then one day Jeff’s dad got mad at Jeff and in his garbled speech kicked Jeff out.
Not knowing what else to do, Jeff packed up all his stuff and left, fully expecting his dad to call him to move back in at any moment. But three days later Jeff was visited by Pittsfield Police asking him to identify his father’s body. His dad had a heart attack shortly after he kicked Jeff out and had been dead for three days. Jeff made a positive ID. He said his dad looked gruesome. His theory, which I fully believe, is that his dad somehow knew he was going to die and didn’t want Jeff to be there when he did.
After his father’s death, Jeff fell back into drinking heavily again, in grief. Sometimes he was drinking as much as a 12 pack before lunch. His mom tried to section 35 him to force him into treatment but he hid from her and went off the radar. Finally, Jeff began feeling so ill that he went to see a GI doctor who diagnosed him with total liver failure and told him his only hope of survival was a liver transplant but that he needed to completely stop drinking to get that. The GI doctor looked at him and told him point-blank.
“If you don’t immediately stop drinking you will die.”
Jeff got the message and stopped drinking immediately.
He didn’t realize that he was supposed to go to detox or he would go into DTs. Several hours later, he was at a party and had a terrible grand mal seizure that went into status epilepticus.
His friends at the party were so busy hiding all the drugs before they called 911 that he sustained an anoxic brain injury from the seizure. He was rushed to the hospital, but would never be the same. He went into a coma from the seizure and then was transferred to a long-term acute care facility in Worcester for intensive rehab. At least he was weaned off the alcohol and put on the transplant list though. Now he is towards the top of the transplant list and receives frequent paracentesis treatments where they drain out the fluid that builds up in his abdominal cavity because his liver is failing and can’t drain the toxins out. He gets that at least once a week at Berkshire Medical Center, it takes a few hours a day.
Jeff never complains, he knows he brought it on himself by drinking too much, but he will joke around about it and make light of it, it’s his coping mechanism. He treats me with the utmost respect even when he’s having a bad day, and he has such a giving heart and is so brave. When he doesn’t feel well, he comes up with the most creative, out-of-the-box ideas for what to do to make himself feel better. He is another unsung hero for what he did for his dad. The good news is that he is very close to his mom still and she is there for him every step of the way.” I finished explaining to Jackie.
“I never knew all of that about him,” Jackie said.
“Yeah, he and his roommate Rick were always trying to hide his dad’s bottles of Blackberry Brandy to cut down on his dad’s constant drinking, they were always fighting off people who came to pick on his dad and beating people up for his dad to protect him. They even picked up girls and brought them home for his dad,” I smiled thinking of some of the stories Jeff had told me.
“How did he finally stop drinking?” Jackie asked me.
“Sheer willpower,” I explained. “He just put his mind to it, and did it, that’s how strong Jeff can be. No AA, no therapy, no meds, nothing, just sheer willpower.”
“Wow!” Jackie shook her head. As she finished setting the last pump and transferred me into my chair. “That is really impressive, I guess I will look at him in a new light. But he’s still my Jeffy, the bad penny that always turns up, to me!” she joked.
“You’re impossible,” I told her as she pushed me over to the main building.
The following day, my mom was the first one to call to wish me a happy birthday. She promised she would be there by noon to take me to Williamstown to see a play with her, it was supposed to be some sort of funny comedy play, and then we were going to go out for ice coffee to celebrate my birthday. As long as it was black coffee and sugar-free, I could sip on coffee because it would immediately drain right back out of my G tube into the G tube drainage bag before it had a chance to digest and make me sick. After my mom called, my maternal grandmother called, and then my paternal grandparents, also to wish me a happy birthday.
When my mom arrived she shared with me that she had signed me up for a professional development online writing course for writers at Gotham Writers school. It was a course on writing blogs. That was part of my birthday present. She had also gotten me some silvery bracelets and some counted cross stitch kits and a latch hooking kit.
“These are awesome presents,” I told her, “I’m so excited about all of them, but I’m especially excited about the writing course.”
“I thought you would be,” she smiled at me while we were driving from Pittsfield to Williamstown on our way to the play. “If you like that course I can also sign you up for some of their other writing courses. They have fiction writing courses, novel writing courses, memoir writing courses, creative non-fiction writing courses, they offer so much, you can cruise through the site and take a look.”
“That would be amazing,’ I agreed. Anything to take the focus off my health issues and change it to something more meaningful.
The play my mom and I watched was hysterical and very entertaining and then I ended up getting a cold brew iced coffee with no ice and 3 equal and 3 sweet n low while my mom got an iced chai and we just sat outside the coffee shop and chatted. She told me about work and the book she was writing for PJ library, all the other crazy projects they had her doing there, and funny stories about the quirky but very intelligent and very warm-hearted multi-millionaire philanthropist boss she worked for, who invited her over to his mansion all the time for dinner and discussions. I told her about my latest projects for Verblio, the book I was working on writing, Jeff, Jackie, and Nan, and updates about my health.
When it was finally time for her to drive me back to Pittsfield and for her to head back home to Springfield, I was really sad, she had made my birthday such a special day. I felt so lucky that my relationship with my mom was now what it was, so open and loving and strong. My safety nets were safely back in place.
Even my relationship with my dad had improved now that I was at Side By Side. We didn’t discuss my health and we had a close loving relationship again. My dad loved me 100% unconditionally. That was certain. He just didn’t know how to accept the fact that I had a terminal illness. He couldn’t bear to face it. So, his defense mechanism was to deny it so vehemently that he had convinced himself that I and all my doctors had made it up and that I instead had a mental illness run so deep to the point that I didn’t know what was really wrong with me. Now I just knew to avoid mentioning that.
He was interested in hearing about Verblio and my writing career, he was interested in hearing about Jeff and Nan and Jackie and my friends online, he was interested in hearing about the craft projects that I was working on, so I brought all of that up and asked him about his writing and his projects and his photography which was his art and we had great conversations together. But it was rather hard to leave out huge chunks of my life that I knew I couldn’t talk about. My dad did call me on my birthday as well though and he told me how proud he was of everything I had accomplished that year and of how far I’d come.
And I had come far, I thought back to last year’s birthday spent at Hillcrest Commons, bedridden and left without my most important medications for my Small Fiber Autonomic Polyneuropathy, feeling shaky and dizzy and scared but trying to put on a brave face for my family while they visited the nursing home to celebrate my birthday with me, about to face months with Jillian attempting to kill me in her efforts to cure me. Compared to back then I had really made a 180.