The Long Middle Part
The opening of Stevie Nicks “Edge of Seventeen” crackles over an obscured speaker in the surgery center pre-op area. I’m in a recliner with a hairnet on and booties over my shoes. I’m here for a nerve treatment to block pain in my tailbone. I’ve been here before for my neck and head and even if this treatment works, I’ll probably be back again.
I’ve been in chronic daily pain for over 18 months now. It’s been a difficult and painful pause in my life & work. I’ve tried almost every treatment available but recovery is slower than I ever imagined. Getting better has been a full-time job which means I’ve dropped almost all my commitments along the way to better health.
I left my job in December 2016 eager to start on a few new ideas. A few weeks later, I had trouble sleeping. I thought I was having a tough time adjusting to a new schedule. I cleaned out the garage, went for some bike rides, and a lot of long walks with my wife, Allison. I started waking in the night from pain in my shoulder. I was quickly diagnosed with a torn rotator cuff, it seemed as if physical therapy, medication & rest would have me back in shape in three to six months.
Six weeks later, I experienced neck pain, severe headaches, and numbness in my hands, face, and feet. It scared Allison & me enough to re-evaluate my recovery plan. I tightened up my eating habits, eliminated caffeine & alcohol and dropped weight I’ve always meant to lose. The pain mostly centered on the right side of my body. What was happening? I closed my laptop lid and limited my phone time. I started doing mindful meditation and listening to audiobooks about pain.
The headaches lessened at the end of April 2017 but left behind a new symptom of having a hard time sitting down for longer than 15 minutes at a time. Driving, dining out or travel became a challenge. Laying down and standing became painful as well. What other positions can one rest in?! It was excruciating. I would have done anything to stop the pain at this point. For the first time in my life, I truly understood why people turn to drugs and alcohol to ease the pain. Instead, I continued to walk every day at Allison’s urging.
April stretched into May and even with physical therapy, exercise, meditation, healthy habits and medicine, things worsened. Typing was definitely out and it was painful to talk for long periods of time. Bright lights and loud noises started triggering pain. Something was really wrong. Brain fog and inflammation set in. Brain fog is like having an uninvited guest sit on your head while you’re forced to remember your second-grade teacher’s name. Underwater. I thought for the first time “I might be dying.”
I can’t describe how terrible this time was to traverse. I was physically exhausted all the time. It was a year ago and I still get a little sweaty thinking about it. I started keeping a pain journal. I cried multiple times a day, often in front of my kids. My doctor worried that I was becoming depressed and prescribed anti-depressants and psychotherapy. However, I was mostly just depressed about being in a terrible amount of pain! The doctor’s appointments, MRI & CT scans, blood-work and lots of well-meaning people asking “how are you?” took its toll too. I was low, in pain and scared.
The anti-depressants made me feel worse. The pain in my tailbone was too much to bear. I stopped anti-depressants and started a long course of antibiotics. Finally, sitting became a little less painful. It’s hard to positively think yourself out of an infection. However, psychotherapy was truly helpful through the pain. Even if you’re not in physical pain the emotional toll adds up quickly.
By June, I started seeing a pain medicine specialist who thought most of my pain was related to a nerve in my neck. If nerves start sending pain signals due to an injury they can stay stuck in that state and may require intervention. After some intense treatments (epidurals, steroids, stem cell, ablations, etc.) and frequent physical therapy, the pain started to slowly back off in Fall 2017. I could sit for longer periods of time. I still spent most of the day laying on the bedroom floor but I had hope at last. I finally wanted to see friends and family again after spending a lot of time feeling an odd mixture of shame or humiliation about my physical state.
Today, I’m in the long middle part of this story. I wish I were writing about my full recovery from… whatever this has been. That’s what I’m working towards every day with continued treatments and physical therapy. However, the part I’ve been looking forward to telling you isn’t here yet. It feels so close some days. I’ve been able to rejoin in the joy of life again. I’ve done a little travel and volunteer work with my family. I’m beginning to think about what problems I’ll work on next. I’m looking forward to a conference in a few weeks where I’ll see good friends. I’m crossing off symptoms every month, but I’m still in chronic pain.
Recovery isn’t a straight line so I’m learning to live with pain. I have this experience to thank for good changes too. It’s brought me closer to my family. I ask for help when I need it and am working on sharing my challenges. I spend more time empathizing with people and less time in political fights on social media. I’m very grateful for friends and family who have checked on me during long quiet periods. It’s not the worst thing in the world to find out you need people and that your family loves you. I hope to have happy updates on my health soon but more than anything, I see many of you in the long middle part of your struggles too. I’m right there with you and wish you strength, help, hope and most of all good health.