On being a medical experiment

 With the help of Google Maps, we found our way to the large medical complex in a neighboring city. Our destination—the cancer center of the medical research university that is overseeing my treatment for vestibular migraine. No, I don’t have cancer, but having to get my infusion in the cancer center impressed me with a sense of gravity.

This was the latest chapter in the medical experiments I’m undergoing to find, if not a cure, some relief from the dizziness and head pressure that have been pestering me for about ten years. That seems like a long time, but hope holds steady. Having a sympathetic doctor willing to try anything helps.

I entered the center, checked in, and a nurse led me to a long open room set up with what looked like large dental chairs. About 15 of them. She told me to pick my chair, so I chose one facing a window with a view of trees. Trees always comfort me and give me courage. This experiment would not be via pills or injections, but rather an IV infusion directly into the blood stream. 

But let me back up. Several years back when I began complaining about my dizziness, my primary care physician began putting me through a series of tests and referring me to numerous specialists. Over a period of three years, I had an MRI, CT scan, x-rays of my carotid arteries, sleep apnea test, and other tests I can’t remember. Specialists included a neurologist; ear, nose, and throat guy; audiologist, allergist; sleep doctor; and physical therapist. The physical therapist was the most helpful; she told me that although she couldn’t do anything about the dizziness, she could give me good balance strategies. It worked; I have yet to fall. But each of these tests and specialists came to the same conclusion—we find nothing wrong with you.

At the end of this period, my PCP told me, “Sorry. I don’t know what’s wrong and there’s nothing more I can do to help you.” She gave up. I secretly wondered if she and all the other specialists had come to the conclusion that there really was nothing wrong with me, that I was a highly imaginative hypochondriac. I began wondering that myself.

So I changed health-care plans and found a new doctor in a university research hospital, a neurologist who specializes in headaches and dizziness. (I had had no idea such a doctor existed.) Having access to all my medical records, she was able to diagnose me during our first virtual consultation. This was during the height of the pandemic; I didn’t get to meet her in person for a year. 

It felt wonderful to have a doctor who believed me and took my symptoms seriously. And it felt wonderful to finally have a name for this thing—vestibular migraine. (I had had no idea that such a condition existed.) She told me that there was as of yet no known cure for this type of migraine, but that researchers and drug companies were working on it. Would I like to become part of the experimentation? My treatments and their results would be entered into a research database and, hopefully, we would find something that would help me. Yes! I absolutely would like to participate. I was tired of being passive. And maybe I could help other people.

So began my new life as a medical experiment. That was three years ago and I’m still contributing to that database. The first treatment was several months of vitamin and mineral therapy; I really wanted that one to work, but I perceived no improvement. That has been followed by 11 different drug experiments, each one taking several months. The second drug, Lamotrigine, actually helped reduce the intensity of the symptoms and I continue taking a small dose every morning. But it’s not enough, so the experiments continue. The actual drug list is impressive and (to me) funny. Here it is (please free to skim this sentence): Rizatriptan, Lamotrigine, Verapamil, Amigriptyline, Gabepentin, Memantine, Cyproheptadine, Meclizine, Emgality, Amiovig, and Eptinezamab. Are you as impressed as I am? Most of these are not primarily aimed at migraines but are sometimes found helpful. For example, the Lamotrigine I’m still on is used mainly for epilepsy and bi-polar syndrome. 

The last three drugs are relatively new and used exclusively for migraine sufferers. This last year I have been on extensive experiments with Emgality and Aimovig. I’m proud of myself as they both required that I give myself a monthly injection in the stomach, something I never thought I’d be able to do. But I learned to do it without trauma. 

The good news is that none of these scary sounding drugs had any adverse effects. The bad new is that they had no good effects either. After each experiment, I had to say that I felt no change for the better. In fact, my condition seems to be getting more intense with time.

So now, there I was in the cancer hospital, sitting in the huge chair, looking out at the trees, and wondering if this next experiment was going to be the ONE. The IV infusion took half an hour, then I sat there another hour to make sure there were no adverse reactions. And then Hal and I drove home. That was two weeks ago. This infusion will last for three months, and then I am to repeat it. So far—no reactions. But no change either. The nurse said that it might take time to see if this would prove to be helpful. (Where have I heard that before?)

In my last office visit I asked my beloved doctor what advances the research was making. Such an honest woman, she responded that because my condition is relatively rare, it has a low priority ranking. Most investigation is focused on diseases like cancer or Alzheimer’s. That makes sense, although it’s not personally encouraging. No advances have been made, she told me.

Still, I’m glad she wants to experiment. We will find something that helps you, she says. She gives me hope.

But my hope is becoming more tempered by realism. After so many experiments, I’m not so expectant that with this new infusion my life will turn around and I’ll be able to skip into old age without getting dizzy. I don’t think I’m becoming cynical. Realistic might be a better word. But it may be that one day I’ll just decide to stop the experiments.

And, of course, I take note of all the good people, with chronic conditions much worse than mine, who carry them until they die. 

So I’ve decided to just keep saying thank you. Not for my migraines. Not for the drugs that don’t work. I not thankful for any of that. But just thank you. Just thank you.

Thank you thank you thank you. Over and over. Yes yes yes to whatever you permit. Repeat  repeat repeat.

I’m no kind of holy experiment to God. God doesn’t need research to discover what’s best for me. I’m his beloved daughter.

We’ll see what happens in the next few months. I wouldn’t mind putting all this dizzy stuff behind me.

But in the meantime, I have more than enough to be thankful for.

Thank you thank you thank you.

Too much chicken gumbo

 I admit it. I don’t like to cook. I did okay when the kids were at home, but now that I’m retired, I really would rather leave this part of life behind. But I live in an independent-living apartment here in the retirement community, complete with a kitchen. We eat most of our meals in the apartment. That means a certain amount of cooking. Hal fixes breakfast, while I try to figure out lunch and dinner. We go downstairs to eat in the community dining room as often as we can.

One way I cope with cooking here at home is every few weeks to fix a big pot of soup or a large casserole, then freeze portions for future meals. A few weeks ago, I cooked a large pot of modified chicken gumbo soup (modified because I substitute corn for okra, not being an okra fan). It’s pretty tasty. I fixed enough for six meals, which is probably two too many, but the freezer looks well stocked.

The following night I dreamed I made a kettle-full of chicken gumbo, enough for 20 people. It was for a church potluck. After I lugged the kettle to the church, I discovered the event had been cancelled. So there I was, with ten gumbo meals. Did I want all that? No. In fact I totally lost my taste for chicken gumbo. So much so that I woke up with a bad taste in my mouth.

The dream was not really about chicken gumbo. And it was not a message from God. My sub-conscious was drudging up a fear it thought I should face. Dreams do that sometimes. This one was about me as a writer.

I’ve been writing magazine columns and blogs for over 40 years. I’ve generally been well received. When I read back over all this stuff (and there’s a lot!), I actually like most of it and don’t want it to die. So I got an idea. I would gather the best reflections and stories and see if I could publish a collection.

After the initial enthusiasm for the project, my inner hidden critic sat up and smirked. “You were younger when you wrote all that,” he reminded me. “Your fans are all dead. No one knows you now. No living person could possibly be interested. Besides, you’re not that great a writer.”

The critic even gets biblical, quoting Ecclesiastes: “Of making many books there is no end, and much study is a weariness of the flesh” (12:12). “Give it up, Nancy,” he continues to goad. “Be retired. Really retired. Read books. Watch movies. Just sit there and relax.” These are genuine temptations.

What the dream tells me is that I suspect (fear) that I’ve made too much literary chicken gumbo. And left in the okra.

Self-doubt is a temptation for many writers and artists, not just us introverts. I’ve dealt with this all my life.

But it’s not just writers, artists, and musicians. I think it’s a common temptation of the elderly to look back and doubt the value of their life’s work. Perhaps not all the time, and probably not all older people struggle with this. But I’ve observed that it’s fairly common. “Was it all worth it? What have I actually done with my life? Am I leaving behind a legacy worth passing on? Will anyone remember me after I’m gone?”

Some observations: 1) Becoming a mature person is a life-time prospect; it doesn’t stop when we become 70. 2) Part of maturity is coming to terms with our past, knowing that in spite of the inevitable mistakes and unmet goals, God can take what we’ve offered to him and bless it for his ongoing purposes. 3) Our ultimate value comes from being God’s beloved sons and daughters. 4) Our legacy is in God’s hands.

I’m writing to myself here, reminding myself of what I thought I already knew. I need a lot of reminders. 

Even after I’m dead. Hal and I arranged to have this engraved on our memorial plaque: “May the favor of the Lord our God rest upon us; establish, Thou, the work of our hands” (Psalm 92:17).

I think I’ll go ahead and publish that collection of past reflections and stories.

In the meantime, I’d be glad to share my chicken gumbo with you. I’ve lots of it.

“Let’s do lunch, Mom.”—The elderly and their families, Part 2

 In my previous blog, I quoted geriatrician Louise Aronson giving the “recipe” for a good old age: “good genes, good luck, enough money, and one good kid, usually a daughter.” I told the story of me trying to be a good daughter to my elderly parents.

I now find myself in the elderly role with grown kids, grandkids, and a few tiny greats. I have the blessing of two “good kids.” Proximity helps. My son David lives in the same town and my daughter Kristin lives in a town a couple of hours down the freeway. Hal and I live here in the retirement community. Part of our decision to move into the community at a relatively young/old age (early 70s) was specifically for our kids, not wanting them to have to take care of us when we got to the place of not being able to care for ourselves. I’ll admit that the options of fighting through to a glorious independence on my own or living semi-independently in a grandparent suite in the back of a kid’s big house both make me wistful at times. I wonder if we made the right decision.  But, yes, we did.

I also wondered when we moved here how our relationships with our family would change. Would this move free them up to ignore us and get on with their lives? Would they no longer feel the need to concern themselves with our challenges and struggles? This situation really does happen to some.

But, thanks be to God, it did not happen to us. Our relationship with our kids, their spouses, and our grandkids, is growing. It’s different, having taken on more of the hues of friendship, although we’ll always be parents. They’re all glad to know Hal and I are well taken care of. There’s sense of freedom, now that obligation and duty are out of the way. While still with its challenges, relationship is a choice.

In the future, the role of my kids will be more important and they will participate in decisions about changes in healthcare, for example when we need to move to a new level of assisted living. That’s a major decision and a huge change in life-style; family involvement is crucial. I hope we’re smart enough to give up driving at an appropriate time, but if we’re not, I’m sure they’ll be instrumental in persuading us to take that step.

I don’t take any of this for granted, knowing our blessing is not the experience of many of my friends. I’ve noticed in this community there are all sorts of ways the elderly and their families relate. Families and human relationships are complex.

My friend Mary (not her real name) is today moving from her apartment in my independent-living neighborhood down to an assisted living unit. Her decision surprised me, as it seemed so sudden. But it makes sense, following her recent health challenges. I remember when she moved here a few years ago. I remember her sons carrying in furniture and boxes. And I remember their frequent visits since then and the concern and love they always expressed. Mary tells me her sons were instrumental in helping her make this decision. They’ve been here this past week, packing boxes, not letting her do anything. And they’re here today, moving all her stuff downstairs to her new room. Seeing this makes me happy; Mary deserves it.

Not everyone gets what they deserve. Some of my friends have “good kids” that live far away. They keep up relationships through phone calls, photos, and vacation visits. Still, it’s not the same as living close. Several people in my neighborhood have left the community to move closer to family. It’s that important.

Some people have kids that live within reasonable distance but whose lives are so busy they rarely see their parents. I notice that some in our neighborhood hardly ever get visits.

And then there are those who are estranged from their kids for one reason or another. This is the hardest to deal with. How people respond to this heartache depends partly on personality. One neighbor is bitter about her daughter’s neglect, blaming her daughter and taking on the role of victim. Her complaints make it hard for people to be with her. I constantly need to pray for compassion and patience. 

Another neighbor, although saddened by her son’s neglect, doesn’t let it rule her life. Her optimism and out-going personality draw people to her and she abounds in friendships. But the sadness and longing for reconciliation are still strong.

One resident literally has no family. No living brother and sisters, apparently no cousins. She never had kids. She has no living blood relative. Janice is a quiet woman and often just keeps to her room. Yet she communicates such a sense of peace and well-being. Her room is decorated with her paintings and crafts, plus numerous pictures of cats, one of her passions. She has a few close friends here in the community and they regularly share meals. Another young friend from her past has adopted Janice as an aunt. She’s making a family on her own.

Being part of a family is a need that doesn’t diminish as we age. In our neighborhood here in the retirement community, we’ve cultivated caring relationships and have learned to call each other family. We have a buddy system for checking up on each other. It’s not perfect, but what family is?

I’ve just read a novel by Jennifer Ryan called The Kitchen Front, based on a real BBC radio program in England during World War II. The program presented recipes using only the war-rations housewives received. In a cooking contest the BBC held, the four contestants started out as fierce competitors but through unusual circumstances ended up as friends. They learned to consider themselves family. One of the women, Gwendoline, remarks at the end of the contest, “One thing I’ve learned through this is that family is incredibly precious. Other things may change us, but we start and end life with our family, whether it’s the one we’re born with or one of our own making. It means that you love and are loved, whoever you are…. And you know that you’re not on your own.”

I love the phrase, “the [family] we’re born with or one of our own making.” I recognize as family many people not related to me by blood, most of them closer to me than many of my relatives. I sense the need to be forming this kind of family here in the retirement community. I feel drawn to reach out to those with less-then-perfect family situations and include them in my circle of love.

We all need family, whatever our age. The family we’re born with. Or one of our own making. Or, in a best-case scenario, both.

"What's up, Mom?" The elderly and their families, Part 1

 Louise Aronson, geriatrician and author of the best-selling book Elderhood, was once asked for the “recipe” of a good old age. She replied with a list: “good genes, good luck, enough money, and one good kid, usually a daughter.”

In my case, I’m not sure about the good genes; both my parents died young. As a Christian, I’m not sure I believe in good luck. Enough money certainly doesn’t apply. But in terms of “one good kid,” I struck it rich, actually having two good kids.

Another leading geriatrician and old-age researcher, Joanne Lynn, writes that, “In our current system … unless you’ve got three daughters or daughters-in-law, you should count on being an old person in a nursing home.” Since Hal and I voluntarily entered a long-term retirement community, we don’t have to worry about the nursing home. But I get her point about the importance of a family that cares for and about its elderly parents and grandparents.

I remember my parents as they entered old age. My mom had long-term rheumatoid arthritis and was disabled for most of my childhood. I actually got used to it, partly due to her cheerful and nourishing nature.

When she was in her mid-fifties and completely disabled, Hal and I left as missionaries to Bolivia, taking with us one-year-old David, the light of my mom’s life. My dad was healthy and an excellent care-giver, but still, I struggled with not knowing if leaving was the right thing to do.

In the middle of our second year abroad, my aunt called to tell me that if I were ever to see my mom again, I would have to come home right away. Our mission board made it financially possible for me to fly back to Oregon, leaving Hal and David to carry on in Bolivia. I brought along with me ten-month-old Kristin.

I have never regretted those six weeks I spent in my parents’ home. Although bed-ridden, Mom had all her mental capacities and her ever sweet attitude. My parents and I had wonderful conversations. I watched a lot of Sunday television football with Dad. And, of course, they were completely enthralled with Kristin, a very lively, vocal baby who entertained us all with her zest for life.

Although death was inevitably approaching, it didn’t seem to darken the time we spent together.

Mom lived seven months after my visit, dying at the age of 57. We didn’t have the means for me to fly home for her funeral, so we had our own private memorial service in Bolivia, with our co-workers joining us, bringing the refreshments and flowers.

Several months later, it was time for us to come back to Oregon for our year of “furlough,” only to discover when we arrived that Dad was in an advanced stage of colon cancer. Wanting to spare me any worry (he was always a very private man), he hadn’t told me anything. Actually, he had been in remission during my visit home and I never even suspected.

The first few weeks in his home frightened me. I hardly recognized the man who had always been so strong and capable. I wrote this poem during those weeks:

Stranger

Your eyes miss my eyes
and stare
    over my shoulder
without aim 
without focus.
Your silence scares me.
Your trembling hands
bewilder,
you, who were so huge
and strong.
    Your teeth
    (and your dignity)
    soak 
    in a green plastic cup.
They wheel you
and feed you,
croon to you
as to a baby.
It fits you ill.
All the lights have gone out
and
    I
        stumble
in this dark.
Name yourself—
lest I flee from you
in horror.

Dad took the rest of our furlough year to slowly die. My brother and I took turns, along with an uncle, to stay in Dad’s home and care for him. Although hard, this was sacred time.

We were able to keep him in the family home, according to his wishes, up until the last two weeks of his life when his care became too hard for us to handle and we put him a nursing home. At the time of his death, all of us—Hal and I, David and Kristin—were staying in his home and visiting daily. Hal was with him at the moment of his death, giving verbal encouraging for him to let go and be with Jesus.

So now I ask myself, was I a “good kid”? Was it right for me to leave home with Mom so disabled? Should I have tried harder to attend her funeral? What about putting Dad in a nursing home the last two weeks of his life? Could I have done better?

At any rate, after the memorial service, Hal, I, and the kids returned to Bolivia for our second term of service. I felt the empty place in my heart, but eventually I came to peace, knowing both my folks were in a better place. I wrote this poem in the year after my father’s death:

Unanswered

You’ve crossed over.
October’s other country claims you now.
Through what strange and lovely landscapes
do you now wheel? What hills, what trees
or cities make you stop and stare?
What new fruits refresh you
and what music fills your soul?
What books, what ideas corral your thoughts,
and with whom do you now discuss
destiny, man and movements?
What balm for your pain,
what opiate for the memories
do they offer you? What shards of light
bleed your spirit into wholeness?
And tell me, have you seen his face,
O my father?

Only God knows if I fulfilled the role of a good daughter, but I was at peace.

An inward violence

Several years ago in a writers workshop, the facilitator gave us the exercise to remember and describe a vivid childhood incident.  It could be happy, traumatic, or funny—but it had to be vivid.  These types of exercises usually bring to mind important things I need to reflect about, and this memory was no exception.

Here’s the memory:  I was six years old, and our family was living in a low-cost housing development in central California—a group of duplexes arranged in a circle around a grassy area where the kids played.  I remember that our neighbors included a gang of older boys (they would have been between seven and ten years old).  They looked mean and scary.   I avoided them.

One afternoon I noticed this group of boys huddled in the common yard.  They were looking down at something, laughing and pushing.  I feared they might be tormenting some animal, so I cautiously approached.  One of the boys moved and I discovered that the object there in the middle was my little brother Tommy, who was lying on the ground and crying.  My fear instantly changed to fury, and I grabbed a board that just happened to be nearby and charged the group, yelling and swinging my weapon.

The boys reacted almost as quickly as I had and fled the scene.  I think I hit some of them before they got away, but the battle field cleared in a remarkably short time.  I helped Tommy to his feet and burst into tears myself.  Then we both ran for the safety of our house.  I don’t even remember my mother’s reaction.

I haven’t thought about this for years, but the memory is definitely vivid.  I learned a few things that day.  I learned that even though I was small, skinny and female, I had what it takes to confront obstacles larger and stronger and more numerous than me.  I also learned that violence works.

Obviously, this requires deeper reflection.  Thanks to the grace of God, I did not develop the violent side of my nature as I grew up.  I am an active peacemaker today by choice.  But I still need to confront the seeds of violence that are part of my nature. (That’s probably why the memory is so vivid.) They spring up every once in a while, for example, in the presence of injustice.  Unfortunately, this is usually some violation of my own rights, rather than a reaction to the plight of the poor or oppressed.  I feel concern for the latter, but rarely fury.  

I’ve learned to control the outward manifestations of my inner violence, but I have to admit its occasional presence. Even now as I’m living in the retirement center, an over-reaction to some situation or to some irritating person reveal to me that something on the inside still needs to be fixed.

Lots of questions:  Did I do the right thing in rescuing Tommy in that way?  (Something in me likes this memory.)  Are there more sophisticated, “adult” ways that I still attack problems by swinging a big stick? Unkind words? Ungracious thoughts?

Will I ever be old enough (mature enough) to live in perfect peace, both inwardly and on the outside? 

Dear Lord, give understanding. Have mercy. Keep working on me. Amen.