Disability

Boys on bed 1 Jan 16 2017.jpg

Patience and Forgiveness

If ever you need reminding about how to practice patience and forgiveness, simply look to your dog.

The human-canine bond would never have evolved or work today without dogs’ boundless capacity to treat us with patience in spite of all the miscues and mistakes we make, and to instantly forgive us for making them.

This realization came to me recently in a roundabout way.

 Heading into the forest.

Heading into the forest.

I was short-tempered with both of my dogs as we were getting ready to head out for a walk in the snowy forest. They were excited, as usual, and making it challenging for me to put their visibility vests on them while they stood in the back of my vehicle.

I growled, saying their names harshly, moving abruptly. They stopped wiggling, looking at me with surprise. Why wasn’t I happy? We were going out into the forest! A person would have told me to calm down or refused to interact with me, but the boys are far more patient and forgiving. Within seconds, they acted as if nothing happened and resumed their excited wiggling as I backed out of the garage.

The odd thing is that in the moment I’m short-tempered with them, I simultaneously know it and back down, asking myself, “Who the hell are you and what did you do with Rebecca?” It’s the weirdest thing.

Sadly, that ability to analyze my behavior in the moment is the result of too much practice over the past fifteen years as I’ve had to learn to control a temper I never used to have, a temper that’s the by-product of a birth defect that for most of my life I also didn’t know I had.

Pain and Its Consequences

It’s estimated that over 100 million Americans suffer chronic pain, defined as lasting more than twelve weeks. The most common types of pain are low back, headache/migraine, neck, and facial. (I score three out of four.)

In my case, the pain stems from a rare neurological condition called spontaneous intracranial hypotension. In addition to the annoying and chronic physical symptoms, it also causes slight, temporary changes in my personality. So slight that most never notice. But I notice. And my dogs notice. As I age, the symptoms are becoming more frequent and pronounced.

Autumn walk in Bear Basin 19 Sept 5 2016.jpg

I can no longer ignore my condition, buck up, wish it away, or keep pretending it doesn’t have an impact upon my life. Forced to confront it and how it affects my physical and emotional wellbeing, I’ve reached a place where I must finally admit that I have a disability. But honestly, as scary as it is to disclose what seems like weakness, being open about it is also freeing. No more pretending or hiding: I’m an attorney. An endurance athlete. An independent woman. With a disability.

I was born with a form of spina bifida occulta. In utero, my neural tube didn’t form correctly and the cauda equina – the horse-tail-like lower end of my spinal cord – is tethered, or stuck, to the dura. (The dura is the membrane that lines the spinal column and surrounds the brain and contains the cerebral spinal fluid (CSF) that provides both with a barrier against shock.) In a normal spinal column, the cord floats freely as the back stretches, twists or turns, but in me, this tethering limits its movement, and causes it to pull against the membrane.

My parents didn’t know I had this defect, nor did it seem to cause problems. I’m told that as a young child, I occasionally had headaches that were described as migraines. Eventually, the headaches stopped and for most of my childhood and early adulthood, I was “normal” except for a slight scoliosis (curvature of the spine) and an odd tuft of hair at the base of my spine. I was a tomboy, and continued my pursuit of outdoor sports – skiing, climbing, kayaking, running – into adulthood without any problems. Then, in my mid-forties, I began to have issues.

Now, fifteen-plus years later, if I hyperextend my back – if I trip over a dog, a curb, or on a root while running trails – or suddenly jar it in a fall, or strain it by lifting or pushing something heavy, I end up with micro-tears in the dura. Cerebral spinal fluid starts slowly leaking out. (Imagine a plastic bag filled with water that drains at a constant rate while also being steadily replenished; if the bag is punctured with two or three tiny holes, the water leaks out faster than it can refill.)

After several days, the leaks result in a much-too-low level of CSF – the “intracranial hypotension” part of the condition’s name. CSF is what allows your brain to float inside your skull without hitting the sides when you move your head. With low CSF, my brain doesn’t float properly. In fact, when I’m standing or sitting, it sags toward the bottom, putting pressure on nerves connected to my eyes, ears, and face, and creating physical symptoms such as constant orthostatic headaches (felt when upright, relieved when prone), tinnitus (ringing in the ears), dizziness that occasionally reaches the level of vertigo, excessive sleeping, and neck pain (a noticeable grinding when I turn my head).

I was diagnosed with these twin birth defects – spina bifida occulta and a tethered spinal cord – following a hard fall while running trails in 2002. A couple of weeks after the fall, I had terrible headaches that didn’t respond to medication and continued for weeks. An accurate diagnosis took nine months, three neurologists, a spinal tap, two MRIs, and dogged persistence on my part. Granted, at the time, it was considered to be a rare condition, and most neurologists had never seen a case.

Because I kept running, the first two neurologists didn’t believe my headaches were bad enough to fit the diagnosis; most patients can’t tolerate being upright, let alone run. It was the third neurologist – a former endurance trail runner himself – who understood that running was my coping mechanism and that as an ultra-distance trail runner, I had high pain tolerance. He also understood how my tethered spinal cord – something not seen in all spina bifida occulta cases – could create a chronic series of tears.

The standard medical treatment – injection of one’s own blood into the spinal column to plug a leak (it’s called a blood patch and trust me, it’s not fun) – was tried twice, but in my case, only worked for a few days. Once it was confirmed that my spinal cord was tethered, blood patches were no longer an option; the risk of the needle piercing my spinal cord was too great. For me, rest and caffeine (which stimulates the natural production of CSF) are the only treatment options that help.

The body has an amazing ability to repair itself, and over a period of a few months, the tears gradually heal. The first month is the worst, as my CSF level keeps dipping. Then, each day becomes slightly better than the last as the leaking slows. A day eventually comes when I realize I no longer have a headache. I rejoice and life is good again. Then a new leak occurs, and the whole cycle begins again.

Coping

Just like my aging tendons and muscles, the dura lining my spinal column has become less supple and flexible with age, and more prone to tearing. The past two to three years, I’ve had almost constant headaches and tinnitus; I honestly can’t remember the last time I was completely symptom-free. I’ve learned to live with these symptoms, and to mostly ignore or work around them.

At their worst, however, they make me cranky, so I retreat, avoiding people and situations that may trigger annoyance; I don’t want to hurt anyone’s feelings. Good thing I’ve always been an introvert and am happy to be alone with my dogs much of the time. But it does make “fitting in” with cultural norms regarding work schedules and socializing challenging.

 Running a trail through some daisies.

Running a trail through some daisies.

Throughout these CSF leak cycles, I keep running, always with my dogs, sometimes with my more-patient friends. In the early stages of a new leak, the pounding of running is sometimes excruciating.  But I run because it helps me cope; that runner’s high and sense of well-being are worth the extra pain.

Being with my dogs always makes things better. Running trails with them, in the forest among trees, streams, wildflowers and wildlife, moving – no matter how slowly – is what keeps me sane. In those moments, I don’t feel disabled; I don’t think about pain. My creativity flows and I feel normal for a while.

 Running on a snowshoe trail in winter, Conall providing comic relief by carrying a tree branch.

Running on a snowshoe trail in winter, Conall providing comic relief by carrying a tree branch.

Because I’ve now been through so many cycles of CSF leaks – which I jokingly refer to as being a quart low – I’ve been able to match the degree of the leak to certain psychological changes. This journey has been a lesson in patience, something else I’ve had to learn.

The psychological changes weren’t initially obvious to me. I knew I tended to be cranky, but who isn’t when they have a headache? Slowly, I realized that my reactions were something more. I was easily irritated, to a greater degree and much more quickly, by people I knew as well as total strangers, by loud noises, traffic, computer glitches … basically, by normal life. Where before I had boundless energy for friends, work, activities, even chores, I now felt unmotivated.

Looking back, I realize that one of my life’s biggest regrets—ending a ten-year, deeply important relationship—was a direct result of my earliest bouts of CSF leaks. None of my doctors warned me that the condition often had a psychological component, so when I wasn’t able to connect with my boyfriend (whose support was unwavering), when I didn’t enjoy engaging in our usual activities, when I felt unlovable and unable to love, I told him to move on and find someone else. Eventually, he did, although we’ve remained friends.

I now recognize the pattern: withdrawing from others (so they won’t annoy me), lack of patience and shortened temper as well as a sort of short-term malaise that in the initial phase of a bad leak prevents me from summoning the energy or enthusiasm to do anything not absolutely required. Over time, I’ve become able to anticipate the bad times as well as situations (and people) that are triggers. If unable to avoid them altogether, I’ve learned to stop my reaction pre- or mid-outburst with a mental “Chill!” that reminds me that the problem is me, not them.

For example: trying to groom one of my dogs, Conall. A wooly Malamute, he has an extra-thick coat that’s prone to matting. He doesn’t like the process – it pulls, and despite my best efforts, can sometimes hurt. When Conall was still a pup, he’d try to avoid me when he saw the brush in my hand, and once I started grooming him, sometimes even growled to tell me how much he wanted me to stop (despite being bribed with peanut butter in a Kong).

 A grooming session, one of several as Conall blows his coat.

A grooming session, one of several as Conall blows his coat.

When I was low on CSF and he squirmed to get away or growled at me, I growled right back and held him forcefully in place as I brushed. (No wonder he didn’t like being groomed! Even my Aussie, Finn, would eye me warily from a few feet away, picking up on my growing anger.) I knew my method was terrible, and was horrified at how quickly my temper flared.

One time, as Conall kept trying to get away from me, I suddenly lost it, going from zero to sixty in a heartbeat. I intended to throw the grooming brush against the concrete floor to startle Conall (oddly, I thought this would improve the situation) but miscalculated, and the brush smacked me on the shin, taking out a chunk of skin and releasing a rivulet of blood. As I howled in pain, I was simultaneously ashamed and taking a mental step back, thinking, “This is crazy; this has to stop.”

Had I not been low on CSF – had I been normal – I would have either used treats to cajole him into cooperating or simply walked away and waited for a calmer opportunity. That small divot in my shin, a scar that will last my lifetime, is my reminder to stop, take a step back, and not put myself into a situation where I’m likely to lose my temper because I’m a quart low.

Accommodations

Almost unconsciously, I’ve created a lifestyle that accommodates my condition, one that puzzles my family and many of my friends. Abandoning a legal career of more than twenty years, I left my life near Seattle to live with my dogs in a house on five acres in rural Idaho. I didn’t know a soul. I just knew I needed space and quiet, needed to avoid having to cope with too-close neighbors or typical urban cacophony.

I’ve voluntarily left cushy jobs with good benefits because dealing with co-workers or employees, work schedules, and commuting was almost unbearable when I had active CSF leaks. I’m now self-employed and work from home, in charge of my own schedule, which reflects how I feel. Most days, I nap or at least lie down and read when “normal” people are taking a lunch break, allowing my CSF levels to recoup a bit and my brain to resettle in my skull. I avoid most social situations, especially big, noisy gatherings. I sleep – a lot, sometimes twelve to fourteen hours a day.

 A more serene gooming session in the yard. Country life suits us.

A more serene gooming session in the yard. Country life suits us.

On the surface, I appear and act quite normal, although possibly a little eccentric. I spend time outdoors with my dogs, running, walking, cross-country skiing. I somehow get work done, although at my own pace.

Email and social media – especially Facebook – have been my saviors. I can maintain critical friendships and connections even when I’m feeling awful, without fear of alienating them. They “see” the symptom-free me, the old me they’ve known, in our written interactions. I sometimes feel like a fraud because I’m hiding the me that doesn’t feel good, the cranky me.

This might sound like depression, but it’s not. I’m not sad, or unhappy, or even lonely, although I long to be in a supportive, committed relationship again. It’s more like a chronic case of a head cold or flu; for several weeks at a time, I just don’t feel mentally strong enough to do anything I don’t absolutely have to do. It takes too much effort to show the world a good face. The endless façade – I’m fine! I’m tough! Everything’s great! – is exhausting. Sometimes all I want is a hug.

It occurred to me recently that in dealing with this condition, I’ve become more like my dogs: taking each day as it comes, one at a time; being active first thing in the morning (when I feel the best, before the headache worsens after I’ve been upright for hours), napping midday, and becoming active again (working from home, writing) in the afternoon and evening. Basically, I have a rather dog-like schedule: sleeping more and not feeling guilty about it; finding joy in the forest, focusing on moving and my surroundings, which allows me to forget briefly those symptoms that nag the rest of the day; eating simply at regular times; being playful for at least a few minutes every day; and avoiding situations that trigger a reaction.

My dogs are excellent wayfinders, helping dissolve the stress of chronic pain while guiding me toward a lifestyle that accommodates my disability and makes me happy.

 Sunsets inspire reflection, serenity and gratitude.

Sunsets inspire reflection, serenity and gratitude.

Since this blog is titled “Dog Lessons,” here are some lessons I’ve learned living with my condition:

*Dogs are an amazing gift when living with a disability; they make every aspect of life better, keeping you grounded in the joys of the moment.

*Don’t judge others too quickly or harshly; you don’t know what hidden pain or silent challenges they face.

*Just as a dog with chronic pain may suddenly bite a family member, so may a person with chronic pain act out of character with flashes of anger. Be gentle. Forgive quickly.

*Be patient with yourself, and grateful when others are patient with you.

*Recognize triggers and avoid them.

*Apologize and explain when appropriate; sometimes others just need context to understand, accommodate, and forgive.

*Be you. Stop hiding or feeling ashamed; it not only doesn’t help, it adds to the burden.

*Give and accept unconditional love, wherever and whenever you can.

[Big thank you to my friend Susan Tasaki who edited this post and made it so much better.]