How do I describe a waking nightmare? How do I impart the full horror of a day that changed my life forever?
My husband, Michael, has been having strange symptoms for a couple of years and at my insistence, we have seen several doctors to get a diagnosis. Nothing has changed after biopsies, thyroid medication, and blood tests until our local internist sees suspicious results and refers us to the Mayo Clinic.
Luckily, my son who is a physician “happens” to be at Mayo doing research at the same time as we are there. He moves us through the maze of clinics and tests and sits with us through the endless waiting periods. He also knows how to talk the 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.
After three days of testing that includes a bone marrow aspiration, a fat pad biopsy, a cardiac consult, and blood and urine tests, Michael is diagnosed with Amyloidosis – a life-threatening illness that attacks the bone marrow and organs of the body. The doctor wants us back again next week for more testing in order to determine which organ systems are being affected. Today, at the end of our stay, he emphasizes the importance of a quick response which makes our local hospital’s slow appointment plan look inadequate and scary.
The doctor recommends a stem cell transplant and chemotherapy and we are 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. We are told it will be 6-8 weeks of living in Rochester, Minnesota, with me trying to find a place to stay and paying around $6000 to do so – hundreds of miles from our support system and our home. It’s almost unimaginable. And yet, it looks like the best bet for a good outcome for Michael. I’m horror-stricken but I cannot cry. Michael does not cry either, but then he almost never cries. I am the one who expresses emotion in our relationship, but this emotion is simply too much.
We get into our car to drive home, both of us silent and thoughtful, in shock really, over what we now must face — not realizing yet that what we are facing is a complete change in every facet of our lives.
On the way home the sky darkens and turns the sickly ominous green color that signals tornadoes in the area. Soon we are driving in torrential rain — Biblical rain, a horrible cacophony of lightning and thunder, and water pouring from the sky so densely that it forces us to stop the car three separate times because we cannot see to go on.
My other son calls wanting to know what we found out at the hospital. He begins to cry when he hears the news and finally, I can cry while Michael drives cautiously through the ever-deepening storm. I look up from the phone call and find we are on a highway that we’ve never been on before, and we are lost – literally lost in the storm. Michael 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 backtrack and a bleak long trip becomes even longer as we drive through the furious gloom.
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 town we get an emergency call from our local doctor saying that 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 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. Apparently, this will no longer be the pattern and it looks like I won’t be enjoying the scenery as much as I used to.
So now I am in the driver’s seat in the horrible storm, not able to see more than a few feet in front of us, terrified that my husband might die on our way home. “This is a nightmare!” I say. He agrees and offers assurance that his heart is fine. But we both know that his assurances are pale and meaningless.
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’ tail lights as we move cautiously through the raw chaotic power that surrounds us. Trucks thunder by, leaving our windshield drenched and opaque, leaving me literally driving blind. It’s as if the very atmosphere is echoing our journey into unknown and frightening territory. I am half hysterical as we finally come within 30 miles of home. My whole being tightens to steer us through the remaining terror of this night.
In spite of this, I speak calmly the words that I feel must be said, “Some part of you is really playing with death right now. We have to face this.” 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 many deaths are. But the rebirth could be into a new and healthier life, a new and healthier relationship. 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 and we cannot know. Finally, we reach home and magically the rain 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.