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Dark Corners
In moments when I am so overwhelmed by the reality of my disease, I go into extreme coping mode. This involves me zooming out as far as possible- far enough to try to intellectually conceptualize this life as simply another phase of my existence. Just a blip. It’s a clear and desperate attempt to disconnect from my feelings.
It’s not often that I employ this defense. I’m typically a fan of feeling my feelings. But it’s also not often that I find myself teetering on the edge of my resilience.
For the past few weeks I had been looking forward to writing about how I’ve been coping with this pandemic. I recently wrote about coping with coronavirus-induced anxiety from my perspective as a psychiatrist. (Read here.) This time it was going to be from my perspective as a patient living with a chronic disease. I thought it would’ve been funny if I started with something like this:
Has life got you down? Are you sick of having to tolerate uncertainty? Do you live in a perpetual state of anticipatory anxiety? Does it feel like you have no control? Are you finding yourself looking for answers into the future while also trying to stay present? Are you desperately grabbing onto any and every bit of information regarding a treatment? Are you trying to hold gratitude and anger in the same hand? Have you lost access to your usual coping mechanisms? Are you frustrated by the restrictions on what you can and can’t do?
If so, call me!
Call me, because I get it. Call me because although the world out there is unrecognizable, the internal emotional landscape you are likely trying to navigate is (tragically) familiar to me. I’ve been here for about the last 15 years. Because of this, if I may say so myself, I feel like I’ve been acing this whole pandemic thing from an emotional standpoint. And as a therapist, I’ve never felt more in my element.
Sure, in that first week or two, I freaked out. I couldn’t stop consuming the news. I felt sad, scared, angry and numb. I was jealous of people who suddenly had all this free time to clean out closets and binge watch shows. I, on the other hand, was busy seeing patients from the corner of my bedroom while managing homeschooling-related Zoom meltdowns. While other husbands were staying home, mine was leaving to go work at Kaiser every day. I cried to him about how I’d never be able to survive if he died. Together we worried about how my already weakened body would react if I myself fell ill.
To top it off, I noticed I was becoming weaker and moving more slowly. It hadn’t dawned upon me until then, but it made perfect sense. I was barely moving around. On a typical day, I at least walk from my front door to my car and then to and from my office. Working from home, I wasn’t even getting up between patients to open the waiting room door. When you live in a body like mine, you preserve whatever physical energy you can, wherever and whenever you can. To make matters worse, I was abruptly cut off from my massages, physical therapy and the gym.
So after coming to terms with the loss surrounding my new macro and micro reality, I did what this disease has repeatedly forced me to do- I adapted. I set up a slightly more proper office in the corner of our bedroom. I made sure to stand up and take a few steps between patients. I ordered an elliptical machine to put in the garage. My sister graciously offered to keep her pool heated so that I could resume swimming on Sundays. I stopped worrying about when the surge would hit and whether my husband would be called up to the hospital wards. Instead I relished the fact that for the time being, he was doing virtual sessions and coming home even earlier than usual. I started sleeping well again. We planted a veggie garden for the first time in years (thanks, Jacob) and I even started painting out on our deck with the boys which is something we never do (thanks, Mom, for the oil paints).
Basically, I settled in to exactly where I was. Not because everything was okay, but rather, quite the opposite. Living with the ongoing uncertainty and anticipatory anxiety of a progressive disease has taught me to optimize and maximize any and all moments of available joy. I can’t rely on life circumstances being comfortable in order for me to feel comfortable. Happiness comes the hard way for me. It must be generated from within. It requires an ongoing investment in emotional vulnerability, mindfulness, and gratitude. Especially since loss lurks around every corner.
One week ago, I turned into an unexpectedly dark corner. I woke up in the morning with acute low back pain. I tried to stay calm. Mild to moderate pain has become an increasingly frequent and unwelcome presence in my life as of late. I’ve mostly been able to manage it. This particular low back pain actually first showed up when we returned from a trip to New York in December. Sitting for hours at a time in my electric tricycle- type scooter appeared to have exacerbated a previously identified tear in the labrum of my hip joint. This brought on something called FAIS (femoral acetabular impingement syndrome) which manifested as horrible hip pain which then led to a painful tendinitis in my knee.
Those were a rough couple of weeks. I cringed every time I tried to stand up or take a step. Not only was it painful, but it was dangerous as I already struggle with maintaining balance. I wondered if this was my new baseline. I wondered if a body like mine- which uses all the wrong muscles and mechanics to move- could even rehab properly. My saving grace then was that I could at least experience pain relief in a seated position and while sleeping on my side. After a couple of weeks of diligently working on it, I fully recovered. I was so grateful and enormously relieved.
This time, however, has been different. For the last week I have been in excruciating pain. Around the clock. At first I calmly reminded myself that I’ve been here before and recovered. No need to panic. Two days in, I scheduled my first virtual physical therapy session. She guided my husband on how to try to release the muscle spasms. It didn’t help. By Saturday night, I could barely move. Unlike last time, there wasn’t a single position I could contort myself in to feel relief. I wasn’t getting any sleep. Advil and Tylenol were of no help.
By Sunday morning, I couldn’t stop crying from the pain. We called the PMNR (physical medicine and rehab) doctor who’s seen me before. Based on my symptoms (exquisite pain, muscle fasciculations, patches of numbness on my lower leg), he suspected there was an L4/L5 disc issue in addition to the pre-existing hip issue. He called in prescriptions for Neurontin, high dose oral Prednisone and a vial of Toradol for my husband to inject. Nothing about this plan felt comfortable to me. But I was desperate. Anything was going to be less uncomfortable than the pain.
Nothing helped. I couldn’t stand up, lie down or or even sit up straight without crying. I couldn’t bear weight on my left leg. I had to use my office chair as a makeshift wheelchair to get around the house. I tried even more medications, including two different muscle relaxants- a class of medications I’ve always feared given that I have a muscle disease. I even resorted to Norco. Still no relief. By Wednesday, the pain was so intolerable that after five weeks of diligently sheltering at home, I had no choice but to go to Kaiser. I needed to get imaging to figure out what was going on.
As we sat with the doctor going over the possible diagnoses before it was time for my MRIs of the spine and hip, I started sobbing. One thing I’ve always appreciated about this disease is that it’s never required any invasive procedures or treatments. Mostly just the mental will and capacity to tolerate the emotional discomfort of the physical losses. And the discipline to keep up exercising and eating healthy. That I can handle. This new dimension of pain and acute incapacitation was too much for me. I can adapt to being physically weak, moving slowly and relying on others for help. But pain- it just feels like a life ruiner. One from which there is no escape.
Those 50 minutes in the MRI scanner were more painful than anything I’ve ever experienced. Even labor. At least with contractions, pain comes and goes. With my legs taped together and no relief from the pre-MRI Toradol shot and valium, I tried to dissociate from my body. I tried to focus on the loud sounds and clicks coming from the machine to drown out the pain coming from my body. When that didn’t work, I heard the angelic voice of my older son singing, “Oseh Shalom” (a song for peace) on repeat in my head.
As we returned to the doctor’s office to review the results of what appeared to be normal MRIs (minus the labral tear and significant muscle atrophy), we decided to try one last diagnostic test. He injected a combination of lidocaine/bupivacaine deep into my hip joint. If there was relief, that meant it was a problem in the joint. If there wasn’t, then we could only conclude that it was coming from a severe spasms/tendonitis in the deep muscles of my abdomen and hips which are repeatedly overused and abused in my body. After four hours, I left there with no pain relief. Just a walker. The metal kind that people put tennis balls under. The one piece of adaptive equipment I’ve dreaded all these years. We decided my only hope was to try some very deep myofascial release/body work. If that didn’t work, maybe Botox.
Obviously, it’s hard to see a physical therapist in- person these days. Not to mention the last thing I want to do is expose myself to someone else. Or hand my body over to someone who isn’t familiar with it or with my disease. It’s all so risky and uncomfortable. But these are choices I don’t have the luxury of making right now. It’s simply a matter of which discomfort is less uncomfortable.
My mom was able to have her physical therapist come over Thursday afternoon. We set up the table outside. We both wore masks. He did intensive myofascial release for 1.5 hours. I cried from the pain. I worried he was doing more harm than good, not understanding that I don’t have normal healthy muscle tissue. I let that go and just I prayed that I was going to get some relief.
I wish I could tell you that I’m better now. I’m not really. I’m no longer crying from the pain, so that’s something, but I can’t bear weight on my left leg due to pain and weakness. I’m trying to inch around the house on the walker. And I’m still desperate to get solid sleep.
I’m not quite sure how I’m going to find my way back to my trusty happy healthy emotional baseline if this pain keeps up. I don’t know how people live with chronic pain. But just like living with this disease before the pain and just like living under the uncertainty and anxiety- provoking threat of this pandemic, I can only rely on the same coping skills and tools I’ve been using all along.
I will continue to make room for my feelings, no matter how sick and tired I am of feeling them. It’s exhausting to feel, but by now I know it’s even more exhausting not to,
I will continue to practice mindfulness and try to be here now, even though it feels impossible. Is this going to be my new normal? Will I be able to return to my beloved exercise routine? Will this setback have catalyzed moving into a walker earlier than anticipated? Is my dependence on my husband to help get me out of bed and dressed a preview of what’s to come?
One thing I do know is that how I choose to fill in the blanks of uncertainty in my mind will directly impact my internal emotional quality-of-life. And that goes for everyone right now during this pandemic. We don’t have to believe that everything is going to be okay. The truth is, a lot won’t be. We do have to believe that we will work through and cope with whatever is going to come our way.
Finally, I will continue to hold on tightly to the gratitude. Gratitude for having health care, the resources to get help and a job that I can continue to do regardless of physical strength, pain or pandemic status. Gratitude for having a beyond incredibly loving and compassionate network of family and friends who will do anything to try to alleviate my suffering.
And most of all, gratitude for getting to live this life alongside a partner who holds my hand and follows me around every corner, no matter how dark. This post is dedicated to him.
