Amid lupus, this family of three longs for a real home
By Fred Dickey
Dec. 12, 2016
A poet tells us a house is not a home. I understand the point. However, if a home is not also a house, or at least a suitable dwelling, the poem becomes just a bunch of words.
The “house” that compels me to mention this is a small motel room of the Motel 6 genre on a backstreet of Escondido. In it are two beds, a small bathroom, a microwave and one of those little refrigerators. For eating, the table is the lap and the chair is the edge of the bed. Even a table-top Christmas tree can’t be squeezed in.
In this cramped room sleep three adults — a woman and her two unmarried children. One bed is shared by the mother, Carrie Crawford, 54, and her daughter, Nicole, 27. Her son, Philip, 24, has the other. This is home. For real.
Harsh as that is, I’d like to leave it at that, but there’s more.
Carrie is a friendly, respectful woman with a smile so broad that, on a lot of people, it would crack their face. She’s a single woman who works as a beautician in Carlsbad. She says she lost her husband a decade ago to another woman. He now lives out of state and is only barely in the lives of the two children.
Philip is an intelligent, personable guy who works graveyard in the warehouse at Best Buy.
Nicole … ah, say a prayer for Nicole.
Nicole has recently returned from two weeks in the hospital, where she is frequently treated for lupus. She had a permanent feeding tube inserted and was given blood transfusions, a procedure she knows quite well.
I address her with that inane, standard greeting: How you doin’, Nicole?
“Fine,” she says.
Just a few years ago Nicole was a tall, willowy young woman filled with vibrant hopefulness. In 2011, this ugly lupus thing hit her and has since abused her with five years of hell — and counting. She’s more friendly and upbeat than she has a right not to be.
“I was working full time. I had a boyfriend. I was going out with my girlfriends. I was just being 22, living life. I wanted to be a nurse, get married, have kids ...”
Instead, Nicole now has to take autoimmune-suppressant drugs to wage war against her own immune system, because it has betrayed her and attacks the body it is supposed to protect.
The consequence is that her system is unprotected and naked to whatever microbes want to invade her body. If you are around her and have a cold, she has to treat it like the bubonic plague.
Nicole has systemic lupus erythematosus and two other autoimmune diseases. What they do is make the body’s immune system mistakenly turn against itself. So instead of forming a barrier against invading microbial organisms, the immune system turns traitor and attacks its own joints and organs.
The result isn’t pretty. In severe cases such as Nicole’s, it’s horrific. We don’t know a great deal about these diseases, except the damage they do.
When she’s not in the hospital for prolonged periods, Nicole is, in effect, a captive in the motel room the family has to call home. All she has in the world for comfort and sustenance are her mother and brother.
Nicole says, “It’s very difficult to live in this room. The little privacy we get is when we might be alone for a few minutes. We're desperate to get out of here. It would be awesome to have my own room. I haven't had my own room in forever.”
All this together must depress you, Nicole.
“I try not to let it, but there are just times where it’s gotten really hopeless for me. Not wanting to take all the medications. Just not wanting to do it anymore. Just wanting to give up. Philip helps. He's my best friend. Whenever I'm feeling down, I can talk to him and he brings my spirits up. He's amazing. He does a lot for me.”
Is there any prospect of a cure?
“No. There's no cure.” And there’s no hope in her voice.
Describe the pain you have.
“Where do I start? It’s constant, generalized pain. I have fractures in my spine. I have bad hips. I have arthritic toes and fingers. The lower lobes of my lungs are collapsed, so it hurts to breathe. I have a lot of nerve pain from surgeries. And so much more.”
What are the happiest moments you have, Nicole?
“Honestly, just being with my mom and Philip. The three of us, just knowing that no matter what life is going to throw our way, we’re always going to be OK. That makes me the happiest.”
Nicole doesn’t mention another of her hurts, but her mother does: the loss of her beloved little rescue dog, which had to be farmed out to friends.
The rent for the motel room is $2,000 per month ($66 per night), which Carrie has been paying for nine months. The family was evicted from its previous apartment because of failure to pay rent, due to a money shortage caused by medical expenses.
I ask if drugs or alcohol contributed to the family’s plight. Carrie grimaces at the question. “No. We have enough trouble without that.”
She is desperate to get her family out of “temporary” quarters and into an apartment. However, she finds herself on an awkward cusp between low-income housing, which she probably does not qualify for, and the suspicions of landlords who realistically view an earlier eviction as a waving red flag.
In self-defense, Carrie cites her motel residency as evidence of being able to pay rent, the earlier experience notwithstanding. The problem is, her cash on hand falls short of funds for a security deposit and a final month’s rent in reserve.
She is also aware of the cold calculation that a prospective landlord might be skittish about renting to such a beleaguered family that might someday face another eviction. Who wants to be seen as a Simon Legree, the hardhearted villain of “Uncle Tom’s Cabin”?
Separately, Carrie describes the agonies of her daughter’s young life: “The disease has affected her brain; it has affected every organ in her body. She’s had heart problems, liver problems, kidney problems. Her lungs have been compromised.
“She'll never have the quality of life she used to have. We’ve all suffered depression over this, but in her, it’s very dire, very grave sometimes.
“A couple of years ago she was in the hospital, she was there for seven months and they said they couldn’t do anymore for her. It was the type of hospital where people go to die.”
Carrie, you’re describing hospice.
“It wasn’t hospice, it was a long-term hospital. That’s what they called it. That time was frightening because of the weight loss. She’s 5-foot-10, and one time she got down to 98 pounds. It was really painful to watch. There is no quality of life. Not right now, no.”
What is her prognosis?
Carrie deflects the question. “She’s suffering, she’s tired. God gave her to me and he’s going to take her back when it’s her time.”
Philip, the brother, dreams of standing at the front of a classroom and lecturing on history. Instead, life handed him a shovel.
He has two A.A. degrees from Palomar College, but the prospect of going on to Cal State San Marcos is as remote as Oxford University. He doesn’t have the money, and he can’t separate himself from taking care of Nicole — nor does he wish to.
Carrie and Philip share caregiving duties. Carrie says he is a good nurse. He monitors Nicole’s feeding tube and the pump that pushes the food through it. He escorts her to the bathroom. He takes care of the hundred little things that every disabled person needs every day.
Philip is acutely aware he’s giving up education, job improvement and a social life. However, it’s a sacrifice he doesn’t begrudge his sister.
“It’s a lot of time and energy on my part. Things would be a lot different if I didn’t feel like my help was a necessity.”
Do you feel the burden of commitment?
“I wouldn’t put it that harshly.”
You’re afraid of the word “burden,” aren’t you?
He says it like a confession.
“I feel like everything is kind of pushing in and keeping me locked into this state of mind that I have to be in to take care of everybody.”
That’s fair, Philip. If you had said, “Oh, I just enjoy getting up in the morning and doing these things,” everyone would know you’re lying.
“Yeah, for sure. … What we’ve been through these past five years, it’s kind of weird telling people about it. It’s like, how does this much bad stuff happen?”
Your mother says drawing close to your sister and taking care of her has made you grow as a person.
“Yeah, I think so. I’ve embraced that (duty).”
Carrie, listening to Philip, becomes quietly emotional. I ask why.
She takes a breath and says, “We don't talk openly like this because it’s too hard. When I hear him speak as he does … We don't really talk like that because we can’t, because we have to keep going.”
As I leave that motel room, Carrie grips my hand with both of hers. It is a gesture of thanks that someone, anyone, would be interested in their desperation. I smile, turn and walk away, past the closed drapes of rooms from which seep cooking smells I don’t recognize. I descend concrete stairs to the parking lot, nodding to young guys just hanging around who nod back.
It is a pleasant day, and in moments I will be in my car, returning to my comfortable life on the other side of the world in Cardiff. There, I will sleep in my king-size bed next to an accomplished wife and with a beagle snoring nearby.
I am a lucky guy, and as I drive out of that parking lot, I feel … awful.
Fred Dickey’s home page is freddickey.net
He believes every life is an adventure and welcomes ideas at email@example.com
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