“God is it!” Facing the fear of loss

Something was wrong that day. I kept thinking maybe it was the pain med I was giving him for his broken ribs making him loopy. But something was wrong and I knew it. With an anguished heart I kept walking out into the back yard and breaking down sobbing, begging God to help us. I did that several times that day.As he slept, I spent a lot of time, as I always did, holding him and looking at him. When Bob was awake I would say, “Hey Precious Man (that’s what I called him all the time when we were alone- that or “Beautiful Husband,”) let’s try to get you out of bed today. Let’s go for a walk in the wheel chair.  Remember how nice that was the other day?”  He would nod or shrug. I sat on the edge of the bed, looking out the window at the roses in bloom for long stretches of silence.

I had prayed Morning Prayer by his side that morning and read to him from the little book about St. Joseph we had been reading from that our friend, Rita had given him.

He listened intently as well as he could, with his eyes closed and his hand on his chest. I figured that though language was hard for him,  he would understand whatever God wanted him to understand, so we always did this.

Apparently Bob understood better than I.

Later on, I was writing an e-mail while he watched.

Suddenly, he said, “Shawnie!” with some urgency. I was at the bedside instantly. He took my hand and looked at me intently.

“Let. God.

Shawn, let God! Let God!”

I said, “You mean let go and let God?”

“YES! GOD! IS! IT! … GOD IS IT!”

We looked at each other.  “God is it,” I agreed.

He squeezed my hand tightly, “God SAYS! God WANTS!” (Here he became frustrated and tired, trying to talk.) Then he began again and I was captivated by the power with which he seemed to speak.

“God says…. ‘Why do you weep?”

His face was intent but very serene.

I had the numinous feeling that this was not, on a certain level, Bob speaking. These words, even before Bob got sick, were not Bobly words at all. He never would have talked like that.

I recognized what he was saying as what Jesus said to Mary Magdalene on Easter morning, “Why do you weep?”

It seemed like the world became quiet for us right then.

I kissed the rough hand I was holding without breaking our mutual gaze. I said, “Well, because I’m scared. And because I love you! I don’t want to lose you!” My voice broke, my tears came, and he nodded calmly, watching my face.

I said, “But I love you and you do what you need to do. I love God. If… if this is what He is asking of us, if this is what God is saying to us then I will try to be alright, so you can go in peace.”

I will never, ever, ever, forget how touched he looked. He was surprised. And he was touched. I have no doubt he felt totally loved by me and that a great burden was lifted from him. I also felt that he was proud of me.

Then I said, “But still I totally believe, and I know absolutely, that God can do anything and He can fix all this even now. Who knows but that He will take us into the greatest, most hopeless situation so it will be all the better?” Bob nodded.

“I hope God will not ask for you from me, Bob.”

He said, “Me too.” And he squeezed my hand. I got into bed with him and held him, kissing his face now and then.

When he was asleep I called Andrea, our friend who is a nurse. I don’t know if I mentioned to her the conversation I had just had with Bob. Probably not. I wasn’t really ready to deal with it.

I had thought if Bob wasn’t better I would take him to the doctor that day. I actually thought he was a little better. He seemed more alert, had no fever, wasn’t coughing as much. He was just sleeping all the time and showing an unBob- like reluctance to move at all.

Andrea really thought I should try to get him out of bed. She thought it could be really bad to leave him lying down too much. She said she would come over and check on him after her last patient.

Bob did not seem to want much to eat. I fed him some “Coconut Bliss” for lunch and he didn’t finish it. This was a first. He seemed to get tired and not want anymore, less than halfway through. I was scared about that.

I reasoned that he was set to see Dr. Erin on Wednesday anyway. Moving him would be almost impossible and certainly painful. If I took him anywhere it would be by ambulance and I was extremely reluctant to do that. I didn’t want to cause him unecessary pain and stress, or expose him to infection. I recoiled from that idea. But I was worried.

My brother, who is Bob’s best friend, Mark, came over with Willie and Jason from the press room to visit during their lunch break. Bob started crying when he saw Mark. They could only stay a few minutes. Bob held Mark’s hand and said, “Stay.” But Mark had to get back to work. He kissed Bob and hugged him though.

I eventually managed to get Bob to sit up in bed, letting him sit on the edge and catch his breath so he wouldn’t be too dizzy before I got him into the wheel chair. He was still very dizzy and nauseated, though, when in the chair. I wheeled him to the front door where he wanted to go and he only looked worse and worse. He looked alarmingly grayish and pale. I could see he felt terrible.

Andrea showed up and she was alarmed, I think, at how bad he looked. He was really out of it and his mouth was open. His eyes were not right. She took his blood pressure and it was really low. He was in pain and wanted to lie on the floor, I remember. We lowered him carefully to the floor and I covered him with a blanket.

Andrea and I had a quick discussion. Then she asked him if he would like her to call an ambulance. He said yes he wanted her to. So we did.

The ambulance guys got to our house quickly and Andrea and I filled them in: Brain Cancer, (GBM,) alert and aware but difficulty with speech, broken ribs from a fall, paralyzed on the right side the last few weeks because of the tumor, low immunity due to present chemo-therapy drug. Has had a bad cough lately, a chest cold? He was so tough it was hard to tell what was going on.

Getting on the stretcher was more painful than I had feared, and I noticed the men tried to distract me from Bob’s pain by firing questions at me.

Andrea stayed behind to meet Roise’s school bus while I rode with the ambulance. Our neighbor from across the street, Donna-Lee, came out and held my hand through the window. I told her it would be OK, we were just having Bob checked out. The driver was kindly and asked gentle questions about Bob on the way, to keep me talking, I think.

A lot of the ER stuff is a blur to me. It was freezing in there. I had only brought my phone, Bob’s wallet and mine, and a rosary.

I held his hand a lot.

I thought some of the nurses and doctors were kind and some of them seemed heartless and insensitive. I couldn’t pray my rosary but I clutched it in my free hand and it is hard to text that way but I did.

Bob slept. His breathing seemed shallow and jerky.

A team of nurses came in with a catheter. Bob realized what they were about to do and made eye contact with the only male in the room, a young EMT standing in the corner. “Hey man! HEY HEY!” like the kid could help him.

I was asked more sets of questions by various specialists. One of them asked me if I was a medical person. I said no, just a devoted, on- the -ball wife.

I had a lot of experience by then. We had been fighting GBM for two and a half years, successfully. His quality of life, until very recently, had been good enough for him to live a fairly normal, “Bobly” life.

Bob was X- rayed on the spot but eventually they wheeled him off for a CT scan. My necessary text updates done, I was alone in our curtained off room like area. A nurse finally brought me something that could pass for a blanket. I clutched my rosary.

A doctor or somebody like that was talking very loudly outside the curtain about a guy who had presented with a couple of broken ribs that night. The man had cancer. “See, he has lung cancer too, look at this, see these on his lungs?”

I thought they were talking about Bob. A guy with cancer and broken ribs.

I cannot express to you the terror I felt. Lung cancer, too? They were talking about Hospice, even. I wasn’t ready to hear any of that at all.

I almost lost consciousness. I had been standing… and the edges of the room started to look a misty black. I sat down and tried to breath in that empty, heartless, freezing room. I couldn’t even cry. I clutched my rosary and tried to pray.

I thought of the verse of Scripture that says, “We do not know what we are to pray but the Holy Spirit prays within us with groans that no words can express.” And I did begin to pray. But I don’t think it was my own prayer. It felt like my soul was praying without my mind taking part at all. My soul prayed by the inspiration of the Spirit, I think. It was praying these words over and over and they seemed to overpower me, “Father, manifest Your Will! Father, manifest Your Will! Father, manifest Your will!”

Eventually Bob was brought back to me and I was able to hold his hand again. I wanted to hold him but he was hurting too much. He said, “I love you,” apologetically. Physical closeness has always been very important in our relationship. He meant that he wanted to be close to me, too, but he was hurting too much to be able to do it.

So we held hands, as specialist after specialist: blood takers, blood pressure takers, respiratory specialists, etc., came in asking questions. All of them were kind to him. Everyone expressed surprise that he had made it so long with GBM, some thinking it must be a mistake on the chart.

A doctor came in who had been Bob’s doctor that night of Dec. 3 two and a half years ago when all of this began with a seizure. He remembered us. He was very kind and even gave me his cell phone number. He told us he was a cancer survivor; of a rare form of leukemia, and had been given four months to live. That was fifteen years ago. So, he said, there is always hope. I needed to hear that. It re-enforced the balancing act I had been doing this whole time.

We had always balanced our understanding that the worst outcome was possible, with hope and faith. This is how we made it. It is how we made it that night, too; faith, hope, and the non stop fuel of love as it is purified to its essentials, until God is it.

A very competent nurse who I am sure Bob admired for her leadership and efficiency, came in, taking over decisively. Bob asked her for something for pain. She was very sympathetic that he had not gotten anything as we had been there for hours and hours. She got him some morphine and he slept for a while.

A young doctor came in to talk to me. He was very kind. He said the situation was that Bob did have a couple of broken ribs but also a serious lung infection.

He had talked to our oncologist, Dr. Erin, who had told him she knew us very well and that I took very good care of Bob, so if we wanted to go home she would let us. However, this doctor said they could give me a break and have us stay the night if we wanted to stay. I said frankly that sounded pretty good right now, as I was past my wits’ end.

The situation was grave. Bob might make it through this but it could go very badly very quickly, he told me.

I dutifully texted this information to the right people.

Mark, and my sister-in-law, Jamie, had the kids with them. I gave medication instructions over the phone. Richard, the neighbor, had called a couple of times to the ER desk asking to talk to me but I could not leave Bob’s side for one minute. I had the people at the desk tell Richard to catch the girls while they were at home taking their medicine.

We were told we would get a room in “Oncology.” I was glad. I remembered how good they are over there from when my mom was in there and that it was quiet and secluded, too, with especially kind nurses.

By then Deacon Ron had come to give moral support and bring us Holy Communion. We were just finally being wheeled to a room. When we got to our room they sent me into the hall. I knew that was because getting Bob into the bed and set up was going to hurt him. As Ron and I leaned against the hall wall Bob started to scream. It was very hard to take. Ron held me. I was very grateful for that.

Once Bob was settled they gave him more morphine and he went into a fitful sleep.

Ron and I prayed the Divine Mercy Chaplet, and we talked for a while. He gave me the Eucharist, but Bob was too out of it to receive. Ron went and got me something to eat, standing over me while I ate a little bit and had some water. I remember there was broccoli and grapes. “Now you can tell Rita I ate,” I said.

Ron handed me his pyx with the Host in it for Bob should he wake up. “You are an Extraordinary Minister of Holy Communion so I can leave it with you.”

That night I slept with the Eucharist on my chest. To a Catholic this is an incomparable favor of Divine Grace and an immeasurable comfort.

Jesus came to spend the night with me and keep vigil for Bob. In my Gesthemane the Lord himself was the angel who came to strengthen me.

 

I texted my Carmelite Community that we were staying overnight. I said, “As Abraham climbed Mt. Moriah with Isaac, the letter to the Hebrews says he reasoned within himself that God could even raise the dead. GOD CAN DO ANYTHING. I will not deny Jesus anything. But I believe.”

I knew if they prayed for me, I could do anything I had to do.

During the night Bob needed more pain medicine, and I went and got people to give it to him.

Various specialist doctors came in to talk to me. Most memorably the “hospitaler” and the lung specialist. I began to wonder if there was a left eye doctor, a right eye doctor, a fingernail doctor, etc.

The lung specialist came in, turned on the lights, and sat on the edge of Bob’s bed. He said Bob had a lung abscess, not just any infection. He seemed to have blood clots in his lungs and maybe his paralyzed leg too. Usually they do an operation to clean the abcess up but there was no way Bob would make it through that in his weakened condition.

I thought to myself, “You don’t know Bob!” Plus I knew God could do whatever He wanted, whatever this doctor might say.

So I thanked the man for his antibiotics and advice and said I would discuss our situation with Dr. Erin tomorrow. He left.

The hospitaller was a nice guy but he was pretty negative about our situation. He also said GBM is always fatal which is not true. I didn’t really listen to him either.

I listened. But I knew Bob would not leave this earth without God’s permission. I was waiting on God. I knew he could talk to me through these doctors. But he was going to have to tell me clearly- drop a piano on my head, and, maybe more importantly, make me capable of hearing.

I was still, as I had been two and a half years, in fight mode and still maintaining my delicate balance of facing darkness as an assessment of terrain to help me prepare for battle.

 

Our friend, Peter, came to us.  He let me sleep as he stayed for nearly four hours putting essential oils on Bob, to help with breathing and pain, every ten minutes, the whole time. The devotion!

I slept (sort of) in the chair beside Bob’s bed with Jesus, the Holy Eucharist, on my chest, my free hand clutching my rosary, and holding Bob’s big hand as best I could.