I’m going to lay down a little truth track. I feel the need to clarify some things and that means your understanding of what’s going on with us will likely shift in uncomfortable and unwanted directions. It is so much easier to see the rosier side of things, to ignore the large ugly elephant in the room, to emotionally distance ourselves from what is actually coming. I do not have this luxury and I will own that in my posts, I’ve tried very hard to “balance” the nightmare with spots of joy, for my sake as well as yours.
This has created a perception that I don’t think is helpful or true. I’m going to tell you an unvarnished version of yesterday that will help illustrate this.
We both woke up in our private room, measurably more rested than the day before and feeling positive about the “flawless” surgery Steve underwent just 12 hours before. The morning shift of nurses came in and we started in immediately on mental assessments. These are simple questions that are designed to check Steve’s mental capabilities.
“What is your name?”
“Where are you?”
“What month is it?”
“What year is it?”
“Where were you born?”
They did this test with him four different times yesterday morning. The only question he got consistently right was his name.
i sometimes add my own question.
“Who am I?”
I cannot express to you what it feels like to see his face go blank, to see him struggle, to know inside him that I’m someone who matters to him, but who he can’t remember. My heart sinks to my feet, but I keep asking because I need to know.
He later remembers who I am. I don’t know what cues are helping him trigger memories. But he does eventually remember I’m his wife, his Fel, his love. It takes a little more time and a little more prodding each day.
He apologizes so profusely. He sees the heavy sadness in me — I can’t hide it anymore — and he weeps for me. For us.
One of the surgeons on his neurology team came in later in the morning and told us we might be able to go home that day. He just had to pass a few tests.
I’m typing this from the hospital room couch so you can guess how that went.
In addition to his mental assessments, we had to do physical tests to check his mobility. I’ll spare you the painful details of those and only say that his ability to walk has diminished to the point where he needs a walker and someone with him at all times to keep him from falling.
What do you imagine happens when someone who forgets everything from the year to what he had for breakfast is told that he has to remember to not get up on his own, to wake me up to help him if he has to go to the bathroom?
i found out at about 1 am when I heard him struggling with the IV machine. I rolled over and he was standing up next to the bed trying very hard to keep his balance with something on wheels. I ran over to him and grabbed one arm with one hand and reached for the call button with the other. He held on to me, trembling and scared. And he fell.
Thankfully he fell onto the bed. But he immediately started yelling at me to help him get back up. I know why he got up. The nurse came, we helped him up, we handled what needed to be handled, and then we sat him back down on the bed. And I completely lost it.
Here at UCLA, help is one button away. When we go home, it’s just me. If he falls, I can’t pick him back up. It means I’ll need to be a very light sleeper because he won’t remember to wake me. It means we need to have handlebars installed in the bathroom. It means a walker, possibly a wheelchair, which means a ramp will be needed for the front door eventually. It means putting this ridiculously colored heavy nylon belt around his chest so I can use it as a grabbing point to resteady him.
Let me be perfectly clear. I have no qualms about what I need to do. I love him with every fiber of my being. I will lovingly carry out every task set before me and I will still love him more each day. He gave me something so precious, something I never thought possible. All that is required of me will never be enough to repay him for the gift of our love, our life together.
I am sad all the time. It changes between a sort of low buzz to an intense, heart burning grief. I got to the bargaining stage last night. I pleaded with God, something I never do, and said that I promised I would never again complain about how impatient he is standing in line, or about how he won’ t let me drive. I threw in that I would give away everything we had to the poor and work only for selfless, humanistic causes if he would only spare him from this horror.
I was asking God this as though it were an easy thing to do. But people die from cancer every day. Those people, who are also cherished by someone, somewhere, aren’t spared. Their roads may even be much harder. We are lucky on several planes. Living where we do, we have incredible access to the best medical care in the country. We are surrounded by friends and family.
Even with all this help I have never felt so incredibly alone.
The kicker is that I know I could call any number of you at any moment and you would be here in a heartbeat, no questions asked. And I would sob and I would try to explain the unexplainable and you might say the right thing or you might not, but it wouldn’t matter because nothing would change. Eventually, we would part ways and I would go back to Steve and the situation would be the same or worse as it was before you arrived.
Yes, there is value in hugs and support and letting it all go. Can you see how I am unable to believe that right now? People always ask me for what I need. The only thing I need, that we need, is for a cure for brain tumors. Everything else feels meaningless. Oh, I know it’s not. A hot meal delivered with love will be life saving. I cerebrally know that those details I need taken care of pile up and only add to the weight of what we are carrying. But I’m finding it impossible to see the value of asking. I’ve been able to ask for help with a few important things — someone is coming by the house today to help with installing some handrails for Steve — but generally I’m just incapable of articulating my needs beyond this unreachable goal of a cured and healthy Steve who always remembers my name.
One of the bargains I made was that I would even give up my marriage, I would give up our life together if it meant Steve would go on living, healthy and happy and unharmed.
Surely, that’s enough, God?
Ok. Ok. Enough. Even I have to recognize when I’ve gone a bit too deep.
I will leave you with a moment of tenderness. As I was writing this, Steve woke up and again tried to get out of bed without assistance. This is the third time tonight. It’s not that he doesn’t want assistance and is being stubborn. It’s because he forgets to ask. He forgets he needs help to keep from falling. So I rush over and grab him and call the nurse. He starts arguing for me to help him up. I tell him repeatedly we have to wait for the nurse. He tries to get up on his own and I lose it and yell for him to stop. And he looks at me bewildered and stops. The nurse comes, we take care of business, he sits down on the bed, and I slump down on the floor and cry. Out of frustration or sadness or anger I’m not sure. In that moment, I had to let it go.
And then I feel his hand in my hair and he’s stroking my head and saying don’t cry. And I look up and he’s smiling at me and he cups my face a lifts me to his for a kiss. I explain that I know it’s because he doesn’t remember that he needs help and he nods. I explain that I’m scared and he says yeah, he is too. I say I’m sorry and he looks carefully at me and says, “only about a third of how sorry I am.” It’s a rare and beautiful moment of clarity for him, a sentence he couldn’t utter yesterday or the day before. So maybe the fluid in his brain is finally draining. Maybe some of his function will come back.
Another moment — I forgot that the nurse had to take his blood sugar before he ate. Breakfast came and he was so hungry I set it up without calling her. He was halfway done when she came in to take it and gave us both a short, scoldy look. So she took it and it was well within normal range and as she left, he let out a snarky, “Ha!”
It’s not all darkness. But it is dark and lonely and frightening a lot of the time. And I’m not as strong as I seem. I’m learning all too well exactly how frail we all are. I hope I come out the other side a better person for it.