A Glimpse From My Shelf

This is a very different entry than I normally would want to post here. I feel its important for me to gain some clarity and getting my story out will help my growth. A great tragedy has happened and there’s so much the world can learn about love. This is my perspective of my year so far. I had to get it out and didn’t know where to put it, and I honestly don’t know what’s coming after this. I might focus on writing this book. Also, its really cool that a few people have come back to read more even without the email notification and I hope I’ve offered something that helps you find peace and stability during your trip through the workshop.

I got the call that my momma was in the hospital in December. Apparently, she had been to the emergency room, and her liver was infected. Maybe cirrhosis. She was in Rogers, Arkansas, at Mercy Hospital, and I needed to go.

No question about it, we were having Christmas in a hospital. It was scary, but maybe it was the best Christmas I will ever have. The tiny hospital room was filled with so much love. Origami Christmas trees, Gillian giving momma her backpack, the kids, and the tiny present opening fun we had. There was more love in that room than I have felt in a long time.

Momma was pretty sick. She had been depressed since Daddy died and never made it out of that. In all honesty, and without shame, there was already an addiction, so she stayed in the bottle after Daddy died. That messed her liver up something awful, but she was alive, and she was happy to be.

She had infections, and she was weak, and she was in pain. But she wasn’t ready to die yet. That’s something she and I talked about later. She was ready for whatever God wanted, but she had decided she wanted to live. This ordeal had given her a new thirst for life and she was going to make the most of it. She was going to try.

So she fought. The doctors in Arkansas put her on medicine for the infection and treated the other related issues associated with her disease, but there was only so much the hospital could do. And Medicaid had paid for the bed long enough, so she was transferred. She was moved around, shipped around, and hauled around like a thing, and no one was informed where they were taking her.

When I returned to Arkansas to see her at the hospital, no one knew where she was. We had to call around to find her. But find her I did, and I resolved not to leave her again. She would have someone by her side while she fights this. It wouldn’t be easy, and I would surely say something hurtful, but she was ready for the fight. She was ready to put in the work, get through rehab, and she wanted to go home to her dogs.

So we worked. She hit her rehab hard, working on her own and with me, not just with her physical therapist. She wanted to give up sometimes (a lot, really), but she kept pushing. She was getting stronger, and that was motivating her. The nursing home was terrible. They only bathed her once(because I emailed the state OMBUDSMAN), they hardly fed her, and they would leave her in her filth for hours if I left her side. I had to do most of the nursing. I was only capable of that because of what Gillian taught me.

We finally got her out of there. Well they kicked her out of there because again, Medicaid wouldn’t pay, but we were going to make it. We knew all the exercises. We knew all of the diagnoses. We knew that when we got her to Virginia, the doctors would take care of her, because I would be there to make sure.

The first week out of the nursing home was hard. It took a lot of energy to get out of there, and Momma is a headstrong woman. So it was hard finding a routine where we were both agreeable. But momma knew I was trying to be gentle and caring, and I knew she was fighting something I had no idea about. So we worked together, and Steve and Joe helped, and we made it through it.

Getting her prescriptions refilled before the trip should have been my biggest red flag. The doctor had only spoken to her in the room for a few brief seconds, and when I called for refills, they simply called everything in, and I went to pick it up. The Xifaxan was the hardest to get. Maybe that should have been a second red flag, but I missed it. Why did I let that happen?

Well, we got the medicine, and we started on the ride home. I wouldn’t have been able to do it without Gillian. Momma had started to get a rash, and it was growing quickly, and she was in pain. The journey was difficult, and stopping to get in and out of the truck was getting progressively harder.

When we finally made it home, Momma’s rash had gotten so bad that her diaper was stuck to her genitals. Momma didn’t want to go to the doctor that night, but we took her to the ER first thing the next morning. The ER doctor was an (I shouldn’t say that about the guy, but I really can’t think of another way to put it so I deleted it and you can use your imagination about the interaction). He took one look at Momma and started treating us like we didn’t have any input to provide. He didn’t care about the rash because her blood pressure was low.  I had been taking her blood pressure regularly and tried to tell him it was normal for her. I tried to get him to listen about the rash. He knew better.

The whole week in Winchester was about like that. We couldn’t leave Momma’s side because the doctors would put bandages on her and rip her skin off. They would poke and prod, and they just kept looking for signs of a failing heart, all the while the rash that was covering her body was growing and growing. She was in excruciating pain, described as being burned alive from the inside out. She said the pain came in waves. We timed them once… about every two minutes, the pain would go up and up and up, then release briefly and cycle up again. It was so agonizing to watch and I can only imagine her pain. I wished then and I wish now that God had given it to me instead of her.

Finally, after several days of searching for heart problems that weren’t there, they found specialists. Maybe it was a nurse who had mentioned seeing something similar, but i can’t remember exactly. I had been saying it for days. Momma was having a reaction to Xifaxan, and it needed to be stopped. I’ve had time to do research now. Apparently Xifaxan shouldn’t be given to people with liver problems, and it had already been associated with SJS. They finally stopped the medicine, but it was too late. The damage was done. Momma’s body was so badly damaged that if she lived through this, she would be permanently disabled. She wanted to live, but she didn’t want to live like that.

The doctors didn’t really have many options except to transport her to a burn center with a dermatologist. That took work, but without a diagnosis of SJS, no one would take her. It was stressful for us because we didn’t know what time she was leaving, and that led to an argument. Momma was first sent to Ruby in West Virginia, where they conducted a biopsy, and the doctors there immediately sent Momma to Mercy in Pittsburgh. There was no question to them about what had happened.

Pittsburgh was scary. I already knew Momma was going to die, and i was losing it. We talked to the doctors and went to the hotel room where the fight happened. It was a pretty impactful fight considering what was going on. Often the situation dictates our reaction. What I think of as mundane, someone else finds deeply impactful. Nevertheless, my momma was dying, and that carried more weight for me in the moment than anything else, and it’s hard to accurately describe why or how the fight played out. I wanted a hug. She wanted space. There has to be some compromise.

Well, Gillian came home(we came home), and I went back to the hospital to see momma through her death. I knew that’s where I was going. My mother was going to hear me tell her I love her for the last time, and it had to be special. Even if she was tripping balls on fentanyl. She deserved a brave loved one by her side. So we played music, and we danced(she sure tried), and I told stories as best as I could. She was there. She heard me. She tried to respond. At the end, someone came into that room. Someone, only she could see. I’ll never forget how she made me feel. Her last words were, “Wait, not yet.” She looked at me as clearly as she’s ever looked at me and said, “I love you.” She turned away and said, “OK.” Love convinced God to wait one more second.

The doctors could do no more. Momma had gone to do whatever it is God has us do next. She was ready. After all that she had been through, she was OK. She lived a full life. She loved her babies. She loved her grandbabies. She loved her brothers and sisters. She got to travel and explore, and she was so hopelessly devoted to her husband.

When I walked through the door at home, I found a letter on the table describing how bad the fight was for Gillian. To be clear, I have the utmost respect for Gillian and the trauma she witnessed. Her pain is very real and if I could take that pain away from her, I would. No one should have to go through that. I was reeling from the death of Momma, and I was too much. I felt guilty for giving Momma the medicine that killed her, and I felt like all of the blame for the fight was being thrown on me. But I was afraid of losing everything, and I didn’t know what to do. I had stated that in Arkansas, it was now coming true.  I felt guilty. I felt vulnerable. I was particularly susceptible to criticism. Now my engagement to Gillian was over, and that was my fault too.

My whole life, I’ve been made to feel responsible for the world around me.  “Why did you let that happen?” is the ingrained stuck point I have from childhood. If I would have spoken up when it happened to me, it wouldn’t have happened to someone else. But I did speak up and no one listened. Not the teachers or my parents when I was a kid. Not the doctors when my momma was dying. Not my family when I said it was all too much to bear. I know I’m not responsible for all of the world’s problems, but I can’t help to feel responsible.

So I went to work. Accepting Momma’s death as a terrible tragedy and a difficult part of life is one of the hardest things to accept. I’ve been going to therapy for months, processing traumas that very few people in history can relate to. I watched my mom die from chemical burns brought on by her medicine I administered then I came home to my fiancé leaving. If those things aren’t my fault, why did it happen? Well, God has a plan, and he’s got something to teach us about love. I hope. God I hope.

The aftermath of my momma’s death is still unfolding. I’ve missed a great deal of work and lost pretty much everything. I have had to take significant personal time to deal with the stress of watching my mother suffer, and now I’ve given up my last hope to save my relationship. Well, God’s got me, so my second-to-last hope, I guess. Sometimes, when things are hardest, I tell myself that people have a choice, and it’s not my fault. Other times, I let anger take the place of sadness and lash out. More often than any of that, I wonder why the Potter doesn’t just step in and take the pain away, however He sees fit. Some things are hard to accept, but I have faith that my true purpose will be revealed soon enough.

I bury my mother this weekend. There are people in my life who know how hard that’s going to be. My only hope now is to trust in God to provide the comfort I need to get through this. The next chapter is going to be very scary for me, but I must go through this fire.