Spring Photo Walk, April 22: Spring Wildflowers Are Here!

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This has been the first week of spring with weather cooperative enough to permit some wildflower blooming. The result was a collision of three types of wildflowers that usually bloom separately from one another: bloodroot, anemone, and trout lily.

I was pleased to see all three of them today. I haven’t had the chance to see all three of them in a few years. Every spring, I intend to capture all the season’s changes in flora, and then time just runs away from me. The next thing I know, the irises are in bloom. At least that hasn’t happened yet this year.

The first picture below shows the next bloom in spring’s progress: Virginia bluebells.

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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.

Spring Photo Walk, April 8

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I was hoping that I’d spot some early wildflowers in bloom, such as bloodroot or jack-in-the-pulpit. I’ve seen several crocus patches in bloom in town, so I was just a little disappointed that the forest floor hasn’t awakened yet. The sole flower I spotted was a brave yet small dandelion on the park lawn. It was so tiny and ill-situated in the grass that it defied having its photo taken.

There was a red cardinal who paused graciously for his portrait as he called for his mate.

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He Is Risen

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Happy Easter!

All is quiet at the Cole house, aside from the rumble of my husband’s snoring in his recliner. He worked most of the night on a water line break, unwilling to resist a chance for overtime now that he’s emerged from his post-shoulder-surgery convalescence. My daughter slept through most of the morning. She had been up late into the night alternating between typing on her Chromebook and reading Ray Bradbury.

Today is a low-key day. We aren’t having a traditional holiday meal, aside from my small ambition to replicate my mom’s baked beans. We will consume “fun” food like hot dogs and chicken strips. I bought a hot dog toaster for the occasion. Have you ever tried this oddball small appliance? You can toast two hot dogs and buns at a time, and they turn out about as well as a freshly roll-cooked carnival hot dog.

Although I attended Catholic school for eight years of my youth due to my mom’s conversion to that faith halfway through my childhood, I seldom attend church. I pray every day and reflect on God, but I don’t feel like I belong when I walk into a church. I just can’t process the intersection between worship and social class. I don’t want to dress up for church (I rarely do so for any occasion). God has seen and loved me when I looked my worst, even when I weighed 260 pounds and grocery shopped in Stewie lounge pants. My faith is strong, but I haven’t encountered a congregation that feels like home.

On Easter, I reflect on God’s infinite mercy. There is no better proof of human imperfection than our failures of mercy. Think of the most odious person you’ve ever encountered in real life or through the media. Christ died for that person’s sins, too. He died for your chance at salvation and Nikolas Cruz’s as well. Forgiveness and redemption are available for everyone you love and anyone you may hate in the past, present, or future.

On Easter, I try to see people through God’s eyes, even though I, like all people, see through a glass darkly in this life.

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In Like a Lion and Out Like a Lamb

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I’ve neglected this blog for half of February and nearly all of March. I saw no point in broadcasting regular updates in my ongoing tale of woe. Of course, there have been happy times, such as seeing how our elder guinea pig has taught the younger one how to demand more hay. By the way, I’ve gathered that the secret to getting more feedings is to act as if one has never been fed since birth, that one’s girth has been attained solely through the act of respiration.

My daughter’s continuing troubles and my ongoing nerve pain have cast a pall over these bright moments. Meteorological winter has lingered far too long as well. We woke up Wednesday morning with a snowfall three inches deep covering the roads. Usually, I dread the prospect of driving during a winter storm, but I felt fearless and relieved at driving through that snow. School had been cancelled for the day, so the day was free of yet another attempt to evade attendance. Spared that struggle, I felt there was nothing I couldn’t face that day.

The next day I received the dreaded truancy letter informing me that my daughter has missed too much school. Nevermind that she has no unexcused absences. This is the last thing we need. I don’t want to relate this mess to the truancy officer. However, I will do so if necessary, just like I already did when I wrote a letter to her school for their records to summarize the crisis. I wrote that letter at the suggestion of her therapist. I think the exercise was therapeutic solely for me.

Last week I had a meeting at the school and learned some of the things Eileen has been doing. She is not inclined at all to tell me much about school, so of course, I was surprised at some of the things I heard. It sounds like she is torn between checking out in the style of Melville’s Bartleby (“I’d prefer not to.”) and protesting the curriculum in general. For instance, when English class starts and her classmates have their notebooks and The Plays of Sophocles ready on their desks, Eileen pulls out a book of her choosing and reads for pleasure for the rest of class. Two such books she read during English class were Susan Powter’s Stop the Insanity and Erma Bombeck’s The Cope Book. I didn’t know whether to hang my head in shame or applaud her campy reading choices. My inclination toward the great works of literature is also lacking.

I so wish that she would reveal her thoughts, hopes, and fears. It’s not like I’m a stranger to her struggle; I am only ignorant of the particulars. The difference is she is several years younger than I was when I had my “breakdown”. My troubles didn’t truly sink their tentacles into me until I went away to college. In a way, she has more to lose due to her age.

I feel like I’d have more luck cutting a diamond with my bare hands than getting her to tell me what is really going on in her mind. Whether or not she chooses to take me into her confidence, I need to find a way to let her know that madness is no refuge; take the help that is offered you to evade it. Madness is not a vacation full of cozy reading and just the right amount of sweet and salty to satisfy your hunger. It is a full force gale that can only be calmed through doing the very things you don’t want to do: listen to those who love you, follow your doctor’s advice, show up at the right time, do what needs to be done first and then bask in the glow of pleasure reading and the like later.

As for my issues, I’m still having problems with nerve pain. The partial relief I had from the L3/L4 epidural injection wore off six weeks after I received it. I also have nerve pain that doesn’t correspond to degeneration in my spine. It looks like it’s possible that I’ve developed fibromyalgia. I have a referral to a neurologist to eliminate other possible diagnoses.

Somehow this pain is easier to deal with than my daughter’s ongoing anxiety and attendance problems. I’d rather live with that than go back to high school.

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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.

And now we deal with bullies . . .

 

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A moment in time from better days

Lately, my family has been trying to cope with a problem that had no name until yesterday. I’ve had repeated, exhausting conflicts with persuading my daughter to go to school. To her, every cold and discomfort has grown to proportions epic enough to warrant a day home. Yesterday I finally had to propose a choice to her: she could go to school or we could visit the ER to investigate the source of her immobility. Really, when these episodes happen, it is like she makes herself as steady as a massive boulder, unmoved by any plea until she overcomes that inertia.

So we visited the ER. In all honesty, I was worried that she was letting everything fall apart because she had lost interest in living. She writes a lot, but she keeps her thoughts cloaked in secrecy, even to the point of creating screen names in non-western languages. I spied one of these aliases and found a blog where she had written: “I’m going to kill myself.”

I looked at the date. She had written that declaration months ago. How could I have missed the tremors of that earthquake that struck in the bedroom across the hall from mine? It’s one of those moments when you must accept that if psychic perception exists, it is unreliable at best.

When the ER staff interviewed us, I confronted Eileen with my knowledge of this writing. They helped us get to the bottom of our problem: Eileen is being bullied in the cafeteria at her high school.

The hospital gave me a list of signs of bullying: attendance problems, slipping grades, insulting oneself, etc. The only signs she didn’t have were missing items and injuries.

The abuse is verbal in nature. When Eileen walks by these boys, they announce that she has no friends and is overweight. She won’t disclose any further details.

For years I’ve feared for what could happen to my child whenever I’m not around. Why? Because Eileen does not tell the story of her life to me. Sometimes she tells her stories under the cloak of anonymity online. My daughter has autism. Her variant of it strongly disinclines her to tell the good or bad of her days.

Her patterns of communication and perception did not have a name until she was in 8th grade. That was when we had a diagnosis of autism. She makes eye contact with few people. Her speech and phrasing, when she does choose to talk, is markedly different from her peers. She can’t remember a time she couldn’t read. She can read and sing in two languages, English and Japanese.

Long story short, she’s had a hard time finding common ground with her classmates. Only a precious few students have taken the time to break through her walls. I thank God for them.

I struggle with knowing what to do next. I have contacted the school to request a change in her lunch setting. I don’t know these boys’ names.

If I could talk to them, I would tell them to stop this madness. Changing Eileen is about as possible as stopping a mile-long train barrelling toward you with your bare hands. Maybe once upon a time each of you fellows dared to be different, and you were forced back into the herd by bullies in or out of school. Whatever your reason for picking on my daughter, you should know that the only result will be hurt.

While she does not share your values, she still has feelings. She doesn’t care what is in style, what team won, who’s dating whom, or who drank how much liquor on Saturday night. She still feels loneliness, and you do nothing but wound her when you remind her of that.

No matter what you say, it is just not possible that she is going to come to school transformed into a skinny girl who wears clothes that please you. She will never pay you compliments on all of your victories large and small. Leave her be. She has the right to an education free of harassment.

My daughter doesn’t want her peers to know that she has autism. Maybe it’s time to disclose that. Maybe there would be some kindness and understanding. Aside from their comments about her weight, which are ridiculous in their own way, they really are harassing her because of her disability. Their comments aren’t much better than making fun of someone for needing a wheelchair.

I admire Eileen for what she has endured growing up. Think back on your school days. There have been entire school years where no one has called my child on the phone, texted her, or invited her to a party. How long could you have survived this?

She is the strongest person I know.