A small window

Meditation. Mindfulness. My multiple sclerosis.

by Aaron M. Freedman

Meditation and mindfulness helped save my life.

I’ve had multiple sclerosis for approximately 60% of my 47 years on this planet. I started experiencing symptoms such as knee hyperextension, weakness in the legs and fatigue, in college. But it wasn’t until I was 27, when multiple sclerosis manifested as frightening focal-point seizures, running down the left side of my body, from face-to-foot, that I was diagnosed with relapsing-remitting multiple sclerosis.

I transitioned to secondary progressive multiple sclerosis a few years later. I’m now a quadriplegic with only limited use of my right arm and hand, and I continue to deteriorate.

My MS attacks the myelin in my spinal cord, not so much in my brain. So, even though I need assistance with all aspects of custodial care, and I remain mostly bedridden, I’m cognitively intact.

But I also suffer from depression, anxiety, toxic shame and other disorders categorized under Generalized Anxiety Disorder (GAD). These mental conditions are the result, directly and indirectly, of MS. Even though I took medication to help with all this, it didn’t control all of the depression. A few years ago, I endured a period of suicidal ideations, spending countless hours trying to figure out how to kill myself.

I was feeling hopeless and alone. And I was having a hard time finding a reason to keep on living.

I was back living with my parents. I had ruined my marriage, and, I felt, my life as well, with self-destructive behaviors caused by my inability to deal with my anger from having MS.

I had no place else to go except a nursing home. My parents gave me a bedroom on the second floor of their house, even though I could no longer walk or stand, let alone negotiate stairs.

I had no choice, and I was thankful my parents took me in. They had a stair lift installed for me, but it required so much effort to use that after a while, I only left my room when it was absolutely necessary.

Now, mostly bedridden, I’d spend broad expanses of time staring out the window (when I wasn’t researching suicide). My hospital bed faced the window, so I had no choice. It was a nice window — small — but appointed with an unpretentious handmade curtain of an almost diaphanous gauzy white cotton that fluttered blithely in the breeze like a lawn moth.

Underneath the window stood a clumsily restored American art nouveau desk fashioned from a patinated oak. A small potted heartleaf philodendron sat on top.

The window framed a row of nondescript suburban split-level homes circa 1955, with manicured plush green lawns juxtaposed against blacktop driveways and concrete sidewalks. Once in a while a moving car or a kid on a bicycle or peacefully drifting clouds and rustling trees animated the scene.

I thought concentrating on this view would give me some equanimity. But my mind was a maelstrom of incessant discordant mental images and chatter, fueled by all those harmful feelings of self-hate. And all this mental noise only stopped, at least consciously, when I finally fell asleep a few hours before dawn. I thought I was going crazy.

I don’t know if it was a subconscious scrambling for self-preservation, but I started to think more about my son. He was still a little boy, living across the country with his mother, and I missed him terribly. But instead of focusing on the wrenching pain and anger of missing him, as I had been doing, I found myself drifting into feelings of joy and happiness.

At first, I tried to ignore these thoughts and return to the familiar mental turmoil because there was a perverse, self-destructive sense of security there. But I couldn’t, no matter how hard I tried.

So, I let these reflections on my son stay in my mind until they left of their own accord.

Before long, I began to evoke mental images of my son and our life together.

I’d focus on these memories and examine them. I’d recall every detail, every nuance:

The fresh smell of his hair;
The hardness of his head;
The cherubic sound of his laughter;
Those big limpid eyes;
The wetness of his tears on my shoulder and chest;
Spending time at the local café, ice cream shop or library;
Watching him run around, usually with a soccer ball and the dog underfoot;
Small hand reaching for mine.

These thoughts caused me deep anguish. But I stopped running from them. I began to accept the pain of missing my child, which was more powerful than anything I’d ever contended with. More than the ever-worsening multiple sclerosis. More than the divorce. More than the total loss of control over my life.

And then, the strangest thing began to happen — the destructive feelings began to soften. Why did this transformation take place?

It’s not that I missed my son any less than I did before. Rather, feelings of love were replacing the negative emotions. Yes, these feelings of love were solely for my son. But that’s what beat back the suicidal ideations, what gave renewed purpose to my life. I’d been selfish. Whether I was with him in person or not, my son needed me. Full stop. If I couldn’t live for myself, then I’d live for my child.

Maybe using my son as my reason to live wasn’t the healthiest way to go about it, but, at that time, I didn’t care — this meditative vehicle kept me going.

By focusing my attention on my son, I became aware of the power of meditation. It’s not like I could flip a switch and stop the suicidal ideations. Moving back from that precipice took time. I backed away from death until I was far enough away that I could turn around and face my life.

I knew that it wasn’t my son that stopped me from doing something I could never undo. It was meditating on the image of my son that gave my unwell mind the needed ballast. I was, without knowing it, practicing visual meditation.

I began by focusing on a mental image of my son. I held it in my attention as long and as impartially as I could. When my mind started to wander, I tried to return my focus to his image. It became easier to remain centered without distraction. My mind began to relax and release into a place of emptiness, a state of being.

I began exploring other forms of meditation. I became interested in Vipassana Bhavana (clear insight meditation), an ancient Buddhist practice that uses mindfulness to focus on breathing. Mindfulness is the ability to focus awareness on the present moment, acknowledging, accepting, and then letting go of every thought and sensation.

I’d spent all these years hating my body and hating myself as I became weaker, paralyzed by MS, and having to rely on others. But focusing on the breath continuously entering and leaving my body compelled me to connect my thoughts and feelings to my physical being.

My rage at my atrophied muscles — my quadriplegic state — turned toward compassion. I felt sympathy for this body — my body — that used to be so strong and capable. And it was through this empathy for myself that I, after so many years and acts of self-destruction, began to accept myself and my MS.

Through meditation, I connect to the kinetic world around me. Everything is changing, even my body. Cells are born and die. Matter moves in and out. My body adjusts to the environment, which, in turn, adapts to it, to me.

Meditation feels grounding, stabilizing, yet vibrant and exhilarating. It’s humbling to be mindful of this connectivity I now feel to, well, everything. I’m realizing that I’m not that important, a part of a whole, and it’s from here, my happiness, my comfort in being me, may come.

Aaron M. Freedman is a writer on Long Island, New York. He was diagnosed with MS in 2001.