8/05/2016
Enlightenment on the Path of Grief
The Storm
There are things that can’t be healed.
August 5, 2016
Michael and I have begun the long drive home from the Mayo Clinic with heavy hearts and minds. We are both exhausted to the core. Michael has undergone three days of invasive and painful testing in order to diagnose what’s wrong with him. Now we know.
Both of us are silent and thoughtful, in shock really, over what we are being forced to face — not realizing yet that what we are facing is a complete change in every facet of our lives. As we make our way home, I see that off in the distance the sky is growing dark and it looks like a storm is brewing on this hot summer day.
Soon, the wind picks up, and Michael steers hard to keep the car on the road. The sky becomes a furious gloom of the green clouds that precede a tornado. Now, torrential rain, Biblical rain, and a cacophony of lightning and thunder begin to accompany us as we struggle to see the highway in front of us. The rain becomes sheets of water pouring from the sky so densely that it becomes impossible to drive. We stop the car several times because we cannot see to go on.
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My husband Michael is sick. Three days ago, we didn’t know how sick, and our local physician referred us to the Mayo Clinic for a second opinion. I have a premonition that Michael is dying, and I am terrified, but he is not. Or at least seemingly, he is not. He seems steady and calm and I try not to let my own fears take over. We make the long trip to Mayo hoping that the local doctor is mistaken.
Luckily, my eldest son Colin, a physician who lives in LA, “happens” to be at Mayo doing research at the same time as we are there for Michael’s evaluation. I feel this coincidence is providence at work as Colin moves us through the maze of clinics and tests and then sits with us in the endless waiting rooms. He also knows how to talk “doctor talk” and the physician in charge of Michael’s case becomes much more transparent and helpful once my son is in the room with us.
The doctor, a tall thin and serious man, supports the diagnosis of our local doctor and talks us through the likelihood that what Michael has is amyloidosis. Though symptoms can be managed, the long-term prognosis is not good. This is a rare disease that has no cure. The doctor wants to figure out what type of amyloidosis Michael has and which organs are being affected. We are made to understand that a stem cell transplant is the best option for treatment. But first, it has to be determined whether Michael is healthy enough to go through this procedure.
Amyloidosis is a disease that occurs when a substance called amyloids, an abnormal protein, builds up in the organs. These amyloids are created in the bone marrow, the very deepest part of the anatomy. We hear that amyloidosis frequently affects the heart, kidneys, liver, spleen, nervous system and digestive tract. Severe amyloidosis leads to life-threatening organ failure.
After our first day of anxiety and testing we take Colin out to dinner and we find a good Italian restaurant. But as we are waiting for the food, we inevitably begin to talk about the nitty gritty of our situation. This is really serious, and we start to discuss all of the possible ramifications. Eventually Colin says out loud that Michael could die. And suddenly, Colin is crying and then I am crying too, while Michael maintains his usual dry-eyed stance. Still, I can see that he is affected. We distract ourselves with the food when it comes, eating automatically, and then go back to our hotel rooms and vegetate in front of the television.
After three days of painful and invasive testing that includes a bone marrow aspiration, a fat pad biopsy, cardiac testing, blood and urine tests, and a PET scan, we are exhausted. The days feel endless in their minutiae, their invasions of Michael’s body, and the horrible anxiety-ridden boredom of sitting for hours waiting in one small room after another for the next examination.
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Now Michael continues to drive us through the storm but our progress is very slow. We barely speak since I don’t want to distract him from the road. My other son, Darby, calls me wanting to know what we found out at the hospital. He begins to cry when he hears the news and finally, I can cry the serious tears I have squelched during these long three days. I can cry for this strained and terrible time while Michael drives cautiously through the ever-deepening chaos.
When I look up from the phone call, I find that we are on a highway we’ve never been on before, and we are lost – literally lost in the storm. Michael, who has always been directionally impaired, missed our turn while I was on the phone back in the little town we passed a half hour earlier, and we are going the wrong way. Now we turn around and backtrack, and a bleak long trip becomes even longer as we drive through the endless downpour.
We stop to rest a few minutes in the little town hoping that the rain will ease up. We’re hungry and tired but the only restaurant that is open is the Dairy Queen and neither of us can face it. The weather map looks like we haven’t even hit the center of the storm yet, and in fact, that center is following our path down the road toward home. We decide to go on, hoping we can outrun it.
Finally, we are on the right road but just as we leave the town we get an emergency call from our local doctor. She says that in the testing they did, they found something wrong with Michael’s heart. She insists that Michael must pull the car over to the side of the road immediately. He is to stop driving because he could go into cardiac arrest “at any minute without warning.” Michael pulls over and I shakily get into the driver’s seat. He has always been the driver in our relationship, preferring to be the one in charge of our vehicle while I’ve been content to ride along, enjoying the scenery. Now it looks like I won’t be enjoying the scenery as much as I used to.
As I take the driver’s seat, the center of the storm catches up with us. Clearly we are not able to outrun it, and I can’t see more than a few feet in front of the car as we slowly make our way down the highway. On top of the terror of this storm, I’m terrified that Michael may actually die on our way home. “This is a nightmare!” I say. Michael agrees and offers assurance that his heart is fine. But I know that his assurances are pale and meaningless.
Now the sun is going down and soon I am navigating on the interstate in complete darkness – the only guidance coming from the lightning and the other travelers’ taillights as we move cautiously through the raw chaotic power that surrounds us. My shoulders hunch together and my eyes feel strained to the breaking point. I can barely see. Trucks thunder by, leaving our windshield drenched and opaque, leaving me literally driving blind. My whole being tightens to steer us through the stark horror of this night. It’s as if the very atmosphere is echoing our journey into unknown territory.
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When we see our doctor again, Michael is finally diagnosed with AL Amyloidosis. The doctor explains that Michael’s bone marrow is producing misfolded proteins that are unable to be used by the body. Because of this, the unusable proteins end up collecting in the body’s organ systems, and the doctor is particularly worried about Michael’s heart. He wants us back again in a week for more testing in order to determine the extent of organ damage.
The doctor also recommends a stem cell transplant along with chemotherapy. We are relieved to hear this since it is the only treatment which has shown any real promise for this disease. However, we are also made to understand how sick my husband will be after this transplant — literally at death’s door with no immune function and in strict isolation.
I’m so shocked that I cannot cry. Michael does not cry either, but then he never cries. I am the one who expresses emotion in our relationship, but this emotion is simply too much. Thankfully, Colin gets the details about the treatment — things like timing, medications, and procedures. At the end of our stay, the doctor emphasizes the importance of a quick response which makes our local hospital’s slow appointment plan look inadequate and scary.
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I am half hysterical as we reach the town that is thirty miles from home. During this entire three days I’ve been thinking about the spiritual truth that is insistently coming forth to be seen.
In the spiritual belief system that Michael and I share, we believe that to some extent, we are creating the reality in which we find ourselves. In other words, consciousness precedes manifestation. And though we may not be aware of what we are creating, it is our creation, nonetheless. It is really hard to take this in for it means that Michael is creating a disease that will likely kill him, and I can barely find the words to speak of this. It may mean that at some level, Michael wants to die.
In spite of still being terrified, I speak calmly the words that I feel must be said. “Some part of you is playing with death right now. And it’s in the very marrow of your bones. It’s the deepest part of your physical being, Honey. The deepest part of your body is trying to die. We have to face this.” I say this without any sense of blame or anger. It is just a fact — part of him wants to die.
Michael pauses for a long moment and says, “You have to die to get a rebirth.” Of course this is true. It is even a truism within the metaphorical language that guides my understanding. But death and rebirth can happen at many levels, from the mundane to the profound.
If this is the death before the rebirth, it is a harrowing death, as perhaps most deaths are. But the rebirth could be into a new and healthier life and a new and healthier relationship between us. And just as possible, it could be Michael’s journey into the final letting go of his sick and burdened body. We don’t know. We cannot know.
Finally, we reach home. As we get out of the car the rain magically stops, and the dazzling clear light of stars appears overhead. We are both grateful and heavy-hearted — knowing that for now, the storm is over.
Enlightenment on the Path of Grief 