To Wish Impossible Things

I don’t have much time for writing this evening. This is the sort of reasoning that drives my dwindling number of blog posts. I don’t know where to begin, and I don’t have the time to start.

If I keep waiting to write until an afternoon yawns wide before me, eventually I’ll cease writing here. This blog will be yet another casuality of attrition.

So I will share this evening’s stream of thought, that I need daydreams about as much as my body needs oxygen. I’ve learned that waking dreams can be crucial in coping with many forms of adversity, especially chronic pain.

The key is to persuade my mind to reflect of pleasing things rather than awful ones. I’ve had persistent nerve pain in my right hip this week, which is a distressing development because my as-known nerve damage is on the left side. The pain strikes like a beacon from the black box of an airplane that’s crashed and refuses to let its wreckage be lost. The volume of its signal is a solid 7 out of 10 while I drive.

It is very tempting indeed to anticipate more of the same suffering in the days to come. However, I’ve found that a daydream of a perfect place is the best tool I have to cope with this nerve pain.

My perfect place isn’t merely some generic place like an idyllic beach. It is impossibly perfect, a forest retreat with city utilities and Wi-Fi that never fails. Here I relax in a cabin that is covered in vines and surrounded with flowers year round. Here I can stop time and have as much time to myself as I need. I might even let a pet or two join me in my repose:


I feel that this place has such a conducive vibe for learning that L’Orange and I could read through spans of the canon of literature with ease. He’d take along my copy of Washington Irving’s short stories that’s been collecting dust and good intentions on my coffee table in real life, and we’d thrill over those pastoral, sometimes spine-tingling tales.

My perfect place would be self-cleaning. It would engage all my of senses.Any food I wanted would appear at my wish. There’s something so comforting to me in imagining a perfectly satisfying meal, which would depend on what combination of salt, fat, or sugar I’m craving at the moment. Or sometimes I imagine something quite wholesome, like garden-fresh tomatoes on top of barley with a brightly flavored dressing.

What seems delightful today would be a small plate of the best fries I ever tasted, which was at a random restaurant in Solvang, California, back in ’94. I ate them at a sidewalk table, and the fries had a stellar crisp-to-fluff ratio with a hint of garlic flavor. The weather was superb for outdoor dining, as it almost never is semirural Ohio. In the perfect place, I’d eat those fries with a bit of fresh dill on top and school cafeteria ketchup for dipping. No ketchup has ever rivaled the high vinegar type of my school days.

And now my time for writing really has dwindled this evening.

Do you have a perfect place you visit in your mind?

By the way, I feel like I am remiss in writing about L’Orange without mentioning his real life sidekick Buddy:

I Choose to Go to the Moon

As I mentioned in today’s garden post, I had an EMG (electromyogram) test this morning. This test was paired with an NCS (nerve conduction study) to measure possible nerve damage in my L4 root nerve. Long story short, I was mildly (and literally) shocked at points along this root nerve, from my feet to my lower back. Then the testing neurologist inserted an acupuncture-sized needle on some of those same points. This needle is equipped to measure the amount of electrical activity of the muscles at rest and contraction.

The speed and degree of electrical conduction can reveal whether a nerve is healthy, pinched, or damaged. During the EMG portion that uses the needles, the sound should be silent when a muscle is at rest. During my test, every point probed along the L4 root nerve produced static both at rest and during contraction. It was like listening to an AM radio in the desert where every station eludes reception.

Onto a small tangent, my husband told me that one of the treasured memories of his youth was tuning in the Wolfman Jack show broadcast from CKLW in Windsor, Ontario. I’m not sure what sort of voodoo he used to make this happen.  This was no easy feat considering that he lived 240 miles south of that city at the time. In my left leg, it’s like the Wolfman Jack, Captain Beefheart, Casey Kasem and similar worthies have taken a permanent vacation.

Today’s electrical studies showed that my L4 root nerve has some permanent damage. The matter of when and how this happened is debatable. The neurologist told me that it is unlikely that last year’s spine surgery caused this damage because I had six good months of recovery afterward. This nerve endured some degree of compression for 10-15 years before the surgery. Now that I am having problems with an adjacent disc compressing this same nerve, the damage is more obvious.

At this time, there is no certain fix for this damage. A second surgery could relieve this pressure, but I would still have a damaged nerve. Another surgery would also present more risk than the first. This revelation makes me wonder if I unknowingly had a pointless first back surgery. Why in the world didn’t anyone order an EMG test before that surgery? How was it possible to get a spine surgery approved by insurance without such a test?

Before that surgery, I mainly had numbness along that nerve. Looking back, my pain before that surgery was much easier to endure than the flare-ups I have now. It’s like that lumbar fusion surgery awakened a beast that rages at the dying of its light whenever I stand in place for more than a few minutes at a time.

Life has ample opportunity for regret. Alas, I can’t time travel back to early 2017 and cancel that surgery. A part of me needs to believe that one is never in the wrong place at the wrong time, that we are exactly where we need to be right here, right now. It is possible that the need for a back surgery could have become urgent eventually. The longer I might have waited for that surgery, the worst the residual damage to the nerve would have been.

It still blows my mind that I lived in oblivion regarding my lumbar degeneration for more than a decade. That was a time when I could let nothing hold me back, and I was better off striving in ignorance. If I had known about this damage, I don’t think I would have even tried to have the life that I have now.

When I think of this oblivion, I recall JFK’s well-known words about the goal of reaching the moon:

We choose to go to the Moon! We choose to go to the Moon in this decade and do the other things, not because they are easy, but because they are hard; because that goal will serve to organize and measure the best of our energies and skills, because that challenge is one that we are willing to accept, one we are unwilling to postpone, and one we intend to win, and the others, too. (found here)

Creating a self-supporting life for my daughter and me has been my moon shot. While I have been married for a couple years now and have a husband who is a great help to me, it was essential to me that I learn to make it on my own. For five years, my daughter and I lived by ourselves, and we were self-supporting. This was no easy feat.

I face mental and physical adversity that could have made this impossible had I stopped long enough to consider it. Here’s what my MMPI results were when I started my personal moon shot:

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That evaluation was courtesy of the Ohio Bureau of Vocational Rehabilitation. I qualified for BVR services, but I did not pursue the plan they created for me because I would run out of welfare benefits before I finished the additional education and training needed to create a career that accommodated my disability well (and Social Security had denied my disability claim because I hadn’t given “unskilled” labor a try (Wtf?)).

So I signed up for an office temp service and prayed that I’d land in a position that could keep a roof over my and my daughter’s head. Thank God it happened! I blindly began the job I have now, thinking it was a steady data entry desk job. When I arrived, I discovered that I’d be walking through a half-million square foot facility to collect much of the data I entered.

No job is perfect and constantly loved (in that way, I suppose jobs are like people), but my job is fairly ideal for me. I never tire of the mystery of finding a pallet that seems to have sprouted legs and left the building. Or why in the world do we have cases that expire on May 36th?

If I had known how damaged my back was, it is possible that I wouldn’t have tried such things. It is true that I continue adjusting to my nerve pain, but at least I know that I am living a life I have proven is not impossible for me.

Below shows how many steps I walked last week:

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Perhaps I am grating cheese to say the following, but I will endure this road, even though I have moments that are harder than I could have imagined they’d be. I still choose to go the moon. I’m loving this metaphor a bit too much, but there are plenty of moon shots ahead of me, even if I have to sit in a chair part of the time to make it there.

Garden, May 23

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I scheduled a day off work today due to an EMG (electromyogram) test scheduled for this morning. The test was only minimally painful, which was a pleasant surprise. One doesn’t expect the sensation of electric shock to be merely inconvenient. The strongest charges did provoke a tiny rush of adrenaline, which I suppose was my body’s way of reminding me that shock is something to avoid.

More on the EMG in a later post . . .

I had some time to take a few photos of the garden. I love the May sunshine, how it offers a warmth that is not yet oppressive. It’s something I long for a bit all year.

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Nothing Ever Changes Unless There’s Some Pain

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Spring is well into its eruption of green and blooms. Once again, it’s been entirely too long since I last posted. I actually took these photos a fortnight ago, but I haven’t gathered the will or candor to post them until now. The previous sentence begs the question of why should honesty enter the equation of creating a blog post with nature photos? This oddity arises because this blog is also an open diary of sorts, and I feel that failing to disclose parts of my ongoing problems would be a lie of omission.

I continue to struggle with chronic pain, and I suspect that I have partly alienated key people in my life with my complaints about it. I can take enough of their perspective to understand why some people just look at me with stone-still faces as I talk about my nerve pain or migraines. They can’t solve this problem for me. Nerve damage is not something that can be fixed like a flat tire.

There’s also something to be said about the notion that thinking about pain is not helpful. I don’t think it’s possible to talk about pain without thinking about it. Reflecting on pain can intensify the sensation of it. Perhaps my conversations about pain tend to become monologues because people might think being supportive of my talking about pain will lead to me thinking more about it and hurting more. There’s an innocence beneath such a perspective. You are lucky if you’ve never felt pain so omnipresent that it could not be ignored. Since I think of lyrics entirely too often, this sort of aforementioned innocence reminds of some lines from “These Days” by the Foo Fighters: “Easy for you to say . . . your pride has never been stolen.”

Speaking of lyrics, the borrowed the title of this post hails from “Goodnight Song” by Tears for Fears. There are bits of treasure to be gleaned from pop culture.

Another gem I remembered this week hails from “I Wish You Well” by Tom Cochrane (who, btw, also wrote “Life is a Highway”): “She wants her space to feel love and be angry.” I’m still angry that pain erupts in me every single day, like a toddler who tantrums again and again for toys that might have been bought if not for the fit thrown. There are few certainties in life aside from birth, death, and change. I’m mad because I don’t want my life to change.

I loved the character and substance of my days in the decade before this mess happened. I loved that I had become a morning person, that I had conquered my fatness (a problem which has returned btw, but not entirely). I loved binge-watching British mystery shows while riding an exercise bike or elliptical machine for the entirety of a series (I’d watch the show for 30 to 45 minutes at a time). I loved my small feats of strength, such as carrying the better part of a trunkload of groceries in one trip.

I’m beginning to consider that the sort of life I was leading was both a denial and intuitive treatment of spinal issues that had been brewing for years before their diagnosis. Weight loss is a good conservative treatment for spinal degeneration. Losing 130 pounds did make me feel better, but all the while I ignored important signs. It is not normal to awaken five nights a week due to leg cramps. It is not ordinary at all for weight loss to restore sensation to a knee that was apt to go numb when doing any significant standing or walking. This era of my life now seems to be an extended remix of the sort of denial that can lead a woman to fail to realize she is pregnant until she is in labor. Wasn’t there a show about this phenomenon called I Didn’t Know I Was Pregnant? I remember seeing an episode of this series wherein one of the women said she was mystified by pains that were “growing stronger and longer and closer together,” until her baby crowned.

I recall laughing heartily over that woman’s surprise childbirth story. I thought, holy shit, how can you be of childbearing age and not equate pain that gets stronger, longer, and closer together with labor? I now know that life is full of such willful ignorance. We bury all sorts of deception and pain until we’re ready to deal with it. There are times when we’d rather not add up signs of betrayal or know what that pain means. We don’t want to stop just yet and open the door to that which must be reckoned with eventually.

I’m lost in charting a course in how I must change to cope with my chronic pain. Should I pursue a cure when some of my previous attempts seemed to be worse than the disease? I belong to a Facebook group for people who’ve had spinal fusion surgery. I’ve noticed that many members have written that spinal fusion surgery was the most painful experience of their lives. In all honesty, I didn’t think it was exceptionally painful compared to other surgeries I’ve had. Actually, there have been times every day this week that I have felt worse than I did in the days after that surgery.

I suppose it doesn’t help that my affect is rather flat through all this. My Midwestern stoicism is very deeply ingrained in me; I seldom look stricken when I’m in pain. I suppose that it is hard to believe me when I mention that today I felt worse than when I was in labor with my daughter, even if that is a true statement (and I had back labor for 44 hours, half of which I endured with no pain medicine).

Here are the diagnoses on my chart at my family’s doctor’s office:

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There are several chronically painful conditions on that list.

My chart at the local orthopedic center has a bit more detail:

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I don’t know how I could keep this mess to myself, to spare people the details and reality of such pain, without being a fundamentally dishonest person. I am the sort of person who has almost no mental real estate for keeping secrets, and all of that space is reserved for secrets that belong to other people.

Lately, I’ve heard that I must be blowing this struggle out of proportion, for I’ve been through worse in the past. For example, people will mention that it must have been harder to leave everything behind but a couple suitcases when my daughter and I relocated 2,000 miles away during her infancy. I assure you, dear reader, that my past struggles were very easy indeed compared to what I face now. Nothing is easier than quitting, no matter what the consequences of doing so. Through quitting, you take the power of choosing the outcome, even if the result is awful. Quitting is not an option now. I must bend without breaking to keep everything in place, no matter how bad I’m feeling.

I will close this post with images of this season’s enfolding growth, and I hope that my mind, body, and spirit begin to reflect this renewal.

Still searching for answers

I’ve had yet another lengthy flare-up of nerve pain. I waited to write because, really, what is the point of peeling that onion of anger and frustration once again? It’s not like this nerve pain recedes completely. It’s been a faithful visitor to me for decades (since age 11). Its visits have become frequent and longer lasting over the years, especially in the past year and a half, with the exception of the six month period immediately following my spine surgery. I had minimal nerve pain during those six months. It’s possible that I lost of bit of my “tolerance” for this pain during those six months, kind of like how one needs to get acclimated to cold all over again at the beginning of winter. Still, you’d think I’d have built that tolerance back by now.

It’s becoming clearer to me that I may not find an answer or a ready narrative for my pain. I recently read a book called Drug Dealer, MD by Anne Lembke, MD (Johns Hopkins Press). While this volume is really a textbook for college classes addressing the opiate crisis, it did have some concepts I found very helpful to my situation. Lembke stresses that story creation is a fundamental part of both culture and identity.  Like every culture, mine has common stories about illness, about pain. There’s a good chance I’m going to pursue one or more those stories to get relief, and the doctors who have treated me and will treat me have their own stories.

I feel lucky that one particular story was not available to me: long-term opiate therapy. Had I gotten surgery for my ruptured L4/L5 disc earlier in time (and my disc ruptured many years ago, unbeknownst to me, actually), this may have turned out differently. I think it was a bad collision of opportunism on one side and compassion on the other that lead to a whole generation of back pain patients getting hooked on opiates. No one can convince me that opiates work long-term at safe doses, and I don’t think they help with nerve pain. There’s also the proverbial elephant in the room, or the colon, if you will, constipation. Why in the world in the world would I want to lay a pile of bricks and mortar on top of the mess I’ve already got going on down there?

I used the term back pain the preceding paragraph, but that is also a source of contention for me. In reality, I don’t often have back pain, and when I do, it quickly resolves itself. No matter how many times I’ve tried to correct the matter in the past and present tense, my appointment records and the like still indicate that I have back pain. Is there is just no diagnostic category for what ails me? I have spinal stenosis, assorted bad discs, and the like. I have radicular nerve pain that is intermittent and moderate to severe when it flares up. Years ago I saw an electrical storm from a highway in the New Mexico desert. The nerve pain feels like that storm looked.

The pain seems to be a function in part of the pace of my movement. This is most evident when I am walking. Slow walking or waiting in line can be an agony to me, but faster walking usually gives me no trouble. Why is it that I can walk miles in a day but I can’t stand in place for more than a couple minutes?

This is the moment when I recall something that my sister, who is a fellow nerve pain/spinal stenosis patient, used to say to me in the midst of our various sibling rivalries, “Nobody knows and nobody cares.”

That may sound radically cynical, but there’s a vital truth in it for chronic pain patients: you are chronic because nobody yet knows how to fix your pain, and if they do not care, do not go back.

I don’t know where to turn next for getting treatment for this nerve pain. The first thing I’ve learned is that any treatment can have unintended consequences. When I had L4/L5 fusion with disc replacement last year, the indication was advanced disc degeneration and severe spinal stenosis. I had significant numbness in my left leg, urinary issues, and the like. I did have sciatica in the months leading up the surgery, but nothing as troubling as the nerve pain I’ve felt in the past nine months.

Long story short, surgery was the treatment of choice for what ailed me. I knew that the discs above the one replaced were not in great shape, but I did not think they would give me trouble so quickly. By the way, despite the nerve pain L3/L4 is generating, it is nowhere near qualifying for surgical removal. The one that did get removed, L4/L5, was so herniated it compressed my spinal cord on one side. It remains a mystery to me why it took so many years for me to feel pain or other symptoms from the L4/L5 rupture.

Next, I had the epidural injection. I wasn’t thrilled with this treatment. The relief I had was partial, and it lasted for six weeks. After this injection, I had nerve pain in new locations like my toes and neck. When the L3/L4 returned, it was mirrored to the right side, too. Now I have nerve pain in all four quadrants of my body. I cannot claim a cause-and-effect relationship here, but I will tell you to be very careful when you open the proverbial Pandora’s box of the central nervous system, especially if you come from a family with a history of migraine or fibromyalgia as I do. It’s not that I feel more pain than I did before I had the epidural; it’s coming from many more locations than it did before.

Back to the concept of story, I suppose it’s up to me to craft one of my own that helps me makes sense of what’s changed within me, one that does not rely on scalpels, syringes, or prescription drugs. We were human long before there were any cures. We loved, suffered, and triumphed before we knew what ailed us.

The Thaw Begins

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The weather continues to vary, and the graph of its changes could stand for an equation not yet quantified. Last night the low was 30 degrees, but Tuesday’s forecast high is 71 with heavy rain. We have reached the point of winter that reminds me of that arcade game with the ever-growing row of quarters that inch ever slowly toward a jackpot that really is the watched pot that never boils.

Against the backdrop of disappearing and reappearing snow, there has been some movement forward in my family, but there are lingering frustrations. The boys who taunted my daughter at lunchtime have been moved to a different cafeteria at her school. As for me, I finally had my epidural injection for nerve pain arising from my L3/L4 disc.

The epidural has definitely helped with my nerve pain. Six days after the injection, it seems as if it resolved 80% of my pain and redistributed the rest in oddball locations like the toes and bridge of my right foot. Before the shot, almost all of my pain was on my left side. What matters at this point is that my pain is tolerable. I sure wish the cortisone shot hadn’t bloated me (hooray for elastic waist pants!), but that side effect should be gone within a week.

Eileen still is still not thrilled about attending school, but what teenager ever has been? There is still a moment every school morning when there is a possibility that things will fall apart, but I’m so proud of her when she overcomes that inertia and gets on the bus.

I’ve started reading In a Different Key: The Story of Autism by John Donovan and Caren Zucker. I’m just a third of the way through this excellent book, but the experience has already been a bit cathartic, especially the passages about the “Refrigerator Mother” paradigm that reigned for entirely too long. Essentially, this theory insists that mothers create autism through poor parenting.

Unfortunately, my experiences suggest to me that this theory just formalizes a common layperson’s definition of autism, that the behavior of such children is nothing more than proof positive of a parent who is too lazy to raise a child properly. This has been the greatest frustration of my time as a mother. There have been a few people who shall remain unnamed, people who matter to me more than anyone else in this world, who in anger have told me that I created all of my daughter’s problems through my parenting. I have been hurt by such words, but there has also been the agony of knowing that I love some people who cling to ignorance despite all of the information I’ve given them, despite their witnessing firsthand many of the trials my daughter and I have endured and overcome together.

When my daughter turned two, a local hospital evaluated her intelligence as part of her intake for early childhood speech therapy. The staff informed me that their evaluation indicated that my daughter was “retarded.” Oh really? She learned to read less than two years later. She took the ACT in eighth grade and scored 31 in the English section.

Don’t believe what people tell you about your child and your parenting if it rings false.

One month down, two to go . . .

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I really don’t like winter. While I appreciate its restful qualities after it’s reality has passed until the next year, I detest winter in the present tense. Why is it that everything seems harder when the weather is awful? It’s not as if I’m living outdoors. Actually, I am outside no more than is necessary.

Since I wrote last, I have endured the H3N2 flu that has made its unwelcome visit to so many homes this year. I did get the flu shot, so the illness was not nearly as awful as the last time I had the flu years ago when I become so delirious that I hallucinated I looked like a supermodel version of my myself when I looked in the mirror. While that symptom was not an unpleasant one, the chills and muscle aches of that flu are something I’d rather forget. I also had the benefit of Tamiflu this time around. I was pleasantly surprised at how quickly that medicine worked on my fever and congestion.

I am still waiting for my epidural shot that should help alleviate the bulging L3/L4 disc that is impinging a root nerve that runs along my left hip, thigh, and knee. Now that insurance has preapproved this treatment, my shot has been scheduled for the middle of February.

If you ever find yourself in need of treatment for spine issues, be prepared to wait in line behind an unbelievable amount of people. These issues are so commonplace I’m surprised that they are not standard fare for conversation, like predictions of winter storms and roll calls of who’s on statin drugs for high cholesterol. If this were so, I would not have been disappointed so many times in how long I’ve had to wait for spinal treatments.

In other news, I have faced a common struggle that plagues parents of teenagers, the age-old battle over school attendance. I have endured a few too many mornings convincing my daughter that every school day is important. I have gone so far as to tell her that attendance is the most important thing one learns in school. In college, I once heard the rumor that St. Thomas Aquinas had a vision shortly before his death in which he saw that all of his erudition was but straw compared to the reality of seeing the Almighty. Likewise, my adult experiences have made the values of my youth seem so trivial. Your grades and class rank have little value if you can’t be depended to show up at work.

In contrast, she made a bold yet shrewd choice in plotting the rest of her high school days. She has applied to join an automated manufacturing program at a local vocational high school. She was the only young woman who visited the open house for this program. Here is a sample of some of the work she enjoyed during her visit:

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I am so proud of this unexpected choice. She’ll graduate with all the classes she’ll need for college, but she’ll also have job skills that pay living wages. I sure wish that I had acquired actual job skills in my high school days. The only vocational skill I had was typing.

When she mentioned that she’ll be wearing a uniform for the work portion of the program, she said, “Maybe I’ll look like Grandpa.”

I replied, “Looking like Grandpa is not a bad thing.”

When I consider her choice, I can’t help but reflect on two truths. We stand on the shoulders of giants, and we are deeply influenced by our ancestors. In my family tree, that giant is my great grandma Nellie, who in the photo below was the only woman making school buses at Lima’s Superior Coach factory:

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