I was stuck in bed. It was August of 2008. I’d recently had a lumbar puncture, a so-called “spinal tap”, to analyze my cerebrospinal fluid for the telltale signs of multiple sclerosis. As a musician, I couldn’t help but have that ridiculous band of fictional headbangers in mind as I underwent the procedure. Unfortunately, my experience was about as enjoyable as their notorious act. The puncture left a small opening in my spinal cord, through which a tiny bit of fluid was slowly leaking out. This leak posed no significant danger, but it did reduce the pressure throughout my central nervous system, resulting in a crushing headache. My doctors tried to patch the hole using a congealed drop of my own blood, but it didn’t work; it would need to seal on its own. I could only reduce the pain to a tolerable level by remaining in a horizontal position. So for the next four weeks, while the wound slowly healed, flat in bed I stayed, hazily binge-watching The Wire and sipping caffeinated energy drinks while pondering what my future might hold.
I am happy to count that experience as the most difficult I’ve faced since my multiple sclerosis diagnosis. Thanks to good luck and the excellent care of my family and physicians, I’ve so far escaped the more devastating symptoms of the disease and avoided any disruptive side effects from treatment. Although I suffer from discomfort and a loss of nimbleness in my arms and legs, I retain good mobility and (mostly) high spirits. My condition has not impeded my productivity or creativity, and in many respects it has enhanced both.
Interestingly, that awful bedridden episode is also inextricably linked with the most emotionally powerful moment of my life. I was laying with my head at the foot of the bed (for a change of scenery) when my wife quietly entered the room. Unexpectedly, she climbed in next to me. I could see trepidation in her eyes and asked what was wrong. She told me she was pregnant. In that moment I experienced a wave of shock and joy and hope that seems almost magical to me now. I burst into peals of laughter, instantly pulled out from my own small struggle and given a clarity of purpose that has stayed with me since. It was scary too, of course. Every plan about our future had been upended by my recent diagnosis. But suddenly it no longer mattered what the details of our circumstances were... I knew that together we would figure out a way to make it work.
Eight months later, my wife gave birth to our son. His middle name is Ember, a spark of hope in any darkness.
I’m currently producing a very personal collection of songs and music videos that explore themes of illness, desire, depression and enduring love. If you’d like to know when it’s released later this year, follow me on Twitter (MaxAvery). My best to you all…
Max Avery Lichtenstein
Just outside NYC