A Blog of Flashbacks

The Impact of Disease—The Third Roommate

December 2020

A couple of days ago, I received a call from a friend apologizing for something she’d said to me. It’s one of those moments when I thought she didn’t say anything I need an apology for. In the course of the long conversation, well beyond the need for any apology, she mentioned having that third roommate in the marriage, the one where you want to say, “You’ve been here long enough now. Would you please leave?” But this person, who is not a person but an entity, cannot and will not leave. The impact of disease becomes a third roommate in a marriage. It won’t go away.

In the case of my friend and her husband, it’s Parkinson’s, an entity who has now earned the sobriquet of PD for them. For other couples I know, it’s PTSD (post-traumatic stress disorder), TBI (traumatic brain injury), MS (multiple sclerosis), Lupus, or Lewy Body Dementia. It could be others too, too many others.

I wrote this poem about the PTSD that wanders the abouts and in and outs of my home. I titled it “Universality” and it’s in The Soul of My Soldier (Familius, 2015).

Universality

It’s larger than our marriage
larger than the sum of us.
The universe walks into our room,
lies down on the bed—
takes form as
mastodon, whale or planet,
wraps around the in and out of us,
never leaves.
Curls in the corner and naps
as we walk our daily lives.

I guess this or any of the other diseases or disorders doesn’t ever leave the house, no, it just turns quiet on occasion and the people can go about their daily lives. Sometimes it wanders about or sleeps in the corner or under a table, but it doesn’t leave the house unless the couple does. They’d like to leave it at home, napping tidily under the corner table. But no, it insists on going wherever they go. It may sleep in the back seat of the car, or rear its head and announce, “I’m here and I won’t let you forget about me.” What a nuisance, just when I thought I had a moment’s peace. I thought this was going to be a pleasant drive through the mountains to the beach. Sorry, not this time.

It’s not the elephant in the room because that cliché refers to something no one acknowledges or discusses. No, this uninvited guest lives quite out in the open with a medical diagnosis.

As a couple or family, you accommodate, you learn to shift plans, hopefully without too much ado. Using an analogy, this entity reminds me of the present. It’s COVID-19 time, and now comes Christmas when I really, really, really want to spend it as usual with my son and family. We won’t get to spend it with our three grandchildren. I can’t watch them open their presents. We can’t laugh with them, hug them, or even just hang out with them. My husband and I refuse to expose ourselves to COVID and risk our lives and leaving our grandchildren without a grandparent, our son without a parent. I know I’ll cry this year when we open presents. I so want to see them to hug, to tease them, and be teased. But that is different; COVID-19 can be temporary even if it lasts for a year or two, and even if we don’t get infected. Still, COVID-19 is a disruptive disease that can result sometimes in death, but can more frequently be an intrusion on life. Next Christmas, when the pandemic will be over, hopefully, Christmas can be back to normal. While we may not feel it now, COVID is temporary. Ending this analogy on the pandemic, I return to those situations, those diagnoses, that don’t go away. 

This salad of letters, be it PD, TBI, PTSD, MS or any other, does not stop one day. It’s a lifetime issue. Its hallmark is that it is not going to go away. Further, it’s unpredictable. This may be a good day, or even a good hour or moment, but that doesn’t say the next one will be. Anything can happen. Dressed and ready to go to an event, the person may suddenly say,

“I need a nap.”

“I’m having a panic attack.”

“I’m having a seizure.”

These are real events that can happen at any given moment, but when they happen, they happen in the now, in the right now, at this very second. Plans change on a moment’s notice, no matter how inconvenient. The bigger reality walks in the room like a mastodon, whale or planet.

So what to do? Stay home all the time? No, you make a situational decision about what to do—stay home or go for a short while.

Each day is a new and different day. We’re all aware of that. Even every day at work or home has its differences, but there is a routine, a pattern. What most people are not aware of, though, is the limit of options because of the impact of a disease. Whatever the routine may be, it can disappear in a second. Whatever your plan, whatever you had your heart set on, when the bigger reality walks in the room, the plan has to change.

In many of these situations, each family has at least one caregiver. The son or daughter who lies in front of the door so a parent, in the middle of a nighttime PTSD episode, does not walk out of the house and begin to wander the neighborhood. The service dog who knows better than any human that their owner is having a panic attack and puts his head in the person’s lap, then waits for the calming to come. The husband who tells his wife that she needs to take a nap right now. The wife gently guides her husband to a chair before he falls. The son, in the back seat, senses his mother panic when she comes across road cones at night and he sits forward and guides her through the construction cones. The dentist who sits and talks with someone who may not be okay at the moment till he ascertains all is well enough for her to drive home.

These are the caregivers who take care of the person they know. Thus, the impact of the disease, any long-term disease, syndrome, or disorder that won’t go away, means that someone needs someone present who knows what to do and how to do it with composure, someone who can deal calmly with this third roommate, this third entity.