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“Are These Sufferings Dear To You?” My Disability, Its Isolation, and My Journey

Once, the rabbi of the Reconstructionist shul where I grew up told me of a discussion he’d had with other rabbis about the second blessing of the Amidah prayer, “Blessed are You, God, who resurrects the dead”—m’chayeh ha-meitim, in the Hebrew. Since Reconstructionism eschews the traditional Jewish belief in bodily resurrection (at the End of Days), the movement’s prayerbook replaces the phrase m’chayeh ha-meitim with m’chayeh kol chai, declaring God as the One “Who gives life to all that lives.”

Some of the rabbis objected to the revised liturgy, my rabbi told me, on the grounds that, even absent literal belief, the concept of resurrection still holds powerful metaphorical power. Perhaps invoking a God who resurrects the dead provides irreplaceable liturgical language for our human experiences of being as-if-dead, and for our sense that we need a force larger than ourselves to help us return from that to life and wholeness.

“I bet you understand that position,” he said to me.

I did.

I was born with a physical disability, a rare muscle disorder. During my childhood, I was quite healthy, and the most salient manifestation of my disability was my significant speech impediment. But when I was 16, I suddenly developed major health problems that, eventually, turned out to be struggles with breathing. I learned quickly that I couldn’t rely on doctors — even the fancy ones — to diagnose me accurately, especially as the problems I was having became increasingly complex and unusual. And so I pushed through mostly on my own.

I spent the second half of high school trying desperately to be a normal teenager, while my body fought to take in enough oxygen to survive. I lived with a constant deep, gnawing anxiety in my stomach — anxiety that regularly turned to terror — and I knew that this anxiety was based on real physical danger, not psychological phantoms.

In the second half of my senior year of high school, I reached a physical breaking point, and was no longer able to go to school every day. I missed the second half of my senior year, and I had to stay at home the following year while all of my peers left for college. For me this was a time of deep isolation, fear
and despair.

I did the only thing that I could find to do: I pushed my emotions as far underground as I could, and I fought. My searches on the Internet for an explanation for my symptoms and for a viable treatment led me to a number of dead ends, but eventually I found a plausible, if unorthodox, treatment plan, and a rogue doctor willing to try it. Slowly, over a period of many months, the treatment worked, and I was able to begin college the following year.

But re-entry to the world was not simple. Three years of serious illness left their lasting emotional and existential imprint. I had survived the worst — most terrifying and most isolating — part of my illness by deadening myself; now I had to figure out how to come back to life.

When I look back now — many years later — on this physical, emotional, and existential re-enlivening, it feels to me like a resurrection. And yet, unlike resurrection as we tend to imagine it — magical, instantaneous — this coming back to life was messy, extended, incomplete. I never returned to the physical ease I’d experienced as a child, but I learned how to live well with a new kind of physicality — one that involved more physical limitations and assistive technology than I’d been accustomed to previously. Additionally, I was emotionally and existentially transformed in ways that took me many years to understand and integrate — especially into my religious life.

Now 28, I have spent years involved in disability activism as well as serious Jewish text study. I have slowly found ways to articulate the emotional and spiritual dimensions of my experiences with illness and disability, and to link those experiences to Jewish teachings. This path began in my first semester of college, and has led me as well through some texts that have been especially powerful for me in thinking about recovery from illness.

At the end of august, I start college. I’m at a small liberal arts school, living among students who are meant to be my peers, but I feel like I’m on an alien planet. At orientation, my new hallmates and I sit in a circle and, as an icebreaker, recount how we spent our summers. The more adventuresome, or perhaps the wealthier, have gone on exotic hiking trips and jaunts around Europe; the rest have worked in summer camps, or enjoyed last hurrahs with high school friends. When it’s my turn, I invent a mundane answer — sparing them, sparing myself.

I find myself in tears often during those first few weeks. What surprises me isn’t the fact that I’m crying, but how and when the weeping happens. I don’t cry when I’m alone. Instead I cry, spontaneously, when I’m in the midst of a crowd — in line at the cafeteria, or muddling through an icebreaker. I’m overcome by the presence of human society. I’m overwhelmed by my sudden restoration to its ranks. I’m sure I don’t believe in God, and yet…my presence among these fresh faces is nothing but a miracle — bittersweet, tenuous, inseparable from the months I spent protecting myself from hope. Tears prick my eyes, and I duck away so that no one will see.

In October, I go to the Metropolitan Museum of Art to complete an assignment for my art history class. It’s the first time in nearly two years that I’ve been on a major outing — more than 10 minutes from home, and away from my college campus––the first time that doing so has felt possible, or safe. As I enter the grand hall of Greek and Roman statues, I feel a surreal burst of freedom. It’s a fragile freedom; I’m waiting for the bubble to pop. But moments pass, and then more moments, and still the bubble holds. I could wander this room, wander it for hours, do endless figure eights around the statues, and it would never be enough.

Over thanksgiving break, I find myself back at shul.

My shul used to be my second home. The building was a beautiful old stone mansion with creaky window seats and wood-paneled walls. As teenagers, my friend Michael and I would hang around on weekend mornings, doing nothing in particular, just soaking up the ambiance of the place.  On Shabbat mornings, I regularly attended services, where I loved chanting from the Torah. But at the start of my junior year of high school, a fire destroyed the shul. It was a freak accident; that was the worst part. Afterwards, I felt a searing emptiness. My oasis was gone, and nothing was left to tie the world together, to make it sensible and fair.

In a sublime example of harmony between the physical and spiritual realms, my health crises began in the same month that the shul burned down. Spiritually shattered, I gave up on this place. I convinced myself I didn’t care. But now, two months into college, something pulls me back, and I find myself sitting across from the rabbi in his office, in a building whose interior I barely recognize. I am silent. What I really want to say is, How could this happen? Does this place still exist, or am I imagining it? How did I give it up? And what am I doing back here? But the words stick in my throat.

I manage to speak, at last, by turning the conversation philosophical. “Here we are,” I say, “sitting here together. But I could get run over by a truck tomorrow, and it would be completely random. And pointless.”

“Of course it’s random and pointless. A lot of people don’t understand that. They want me to give them answers. ‘But, Rabbi, why? He was such a good person!’” He says this in an accented falsetto that makes me laugh.

“But if nothing goes in a straight line, and everything falls apart for completely random reasons, then you can’t
trust anything.”

“Things fall apart. But the important thing is that you keep trying to build them anyway. You don’t give in to the absurdity. You acknowledge it and you work against it.”

“I don’t know if that’s possible.”

“You’re sitting here in front of me, aren’t you?”

“Yeah. Well. Maybe.”

“You are. That’s something.”

“Maybe I’m not. I don’t know.”

“Look, I don’t want to be a Pollyanna. This afternoon I’m going to visit a woman whose daughter-in-law just died of cancer. She was 40 years old and had two little kids. She was run over by a truck. What do I say?”

“I have no idea.”

“Me neither. Sometimes there’s nothing to say. Sometimes all you can do is hold their hand and listen.”

We stand and walk downstairs. I run my hand along the shiny new railing and feel my feet slap on the new floor tiles. The rabbi looks up at the ceiling. “They gutted everything,” he says. He indicates the wall that once held the main staircase. “They wanted to save the old staircase, but they had to tear it down. So they put the new stairs over here. But it makes more sense to have them on this side anyway.”

“I guess so.” He’s rationalizing. We reach the door.

“Come back sometime soon. It’s good to see you again.”

“I’ll be back in December. Unless I get run over by a truck.”

“I’ll see you then. Unless I get run over by a truck. Although, if we both get run over by trucks, maybe we’ll meet somewhere else.” He starts up the stairs, then turns back and looks at me pointedly. “You know I don’t really believe that.”

“I know.”

“Our molecules will congregate somewhere. But it won’t be us.”

During the 18 months that comprised the worst period of my illness, I strictly prohibited myself from listening to music. In order to survive, I needed to be frozen. Music was dangerous.

On the drive back to college from that first Thanksgiving break, I take out a CD and slip it into the car CD player. It’s a compilation of ‘60s protest songs that a teacher distributed for a junior-year history project. Suddenly, I am 16 again, walking the halls of my high school, dangerously unable to breathe, a leaden weight in my chest, desperately wanting to wrap myself up in the normalcy — both glorious and suffocating — of lockers, cafeteria lunches, SAT scores.

The Eastern world, it is exploding…. You’re old enough to kill, but not for voting.

I remember how those lines used to echo through my head, how I subconsciously emended them: You’re old enough to know that death is real. And that no one who is supposed to protect you can. But you’re not old enough to be an adult. Not old enough to know how to be one.

I’m 19 now. I’m an adult, perhaps: I’m living away from my parents. I have a driver’s license. I’ve battled the medical establishment, and won. I can’t tell if I still live in a war zone. Thawing my emotions is hopeful yet agonizing, like stretching out numb, frostbitten fingers.

January. Winter break. I’m back home, and so is Michael (not his real name) — my oldest friend, my shul buddy, my Red Sox-Yankees sparring partner.

I’ve barely spoken to Michael in two years; my illness and the turmoil of both our lives have separated us. Now I call him, and we make plans to get together. He’s never been one for talking, really, and I’m not sure what we’ll say.

In the end we don’t say much of anything. Instead, we go to the elementary school playground and sit on the swings. It’s winter, but the weather is gentle. We sit on the swings the next day, too, and the next — and then we sit at Starbucks, and at the greasy Chinese restaurant where he always gets the same lunch special. (This, I think, is Michael’s particular genius — I angst and critique and ruminate, while he eats beef with broccoli.)

We sit together, doing nothing, but everything, for 17 days in a row. I remember exactly. And, after 17 days, I start to feel that maybe there are kindnesses in the world that can exist without being snatched up, and maybe lost objects can sometimes
be returned.

Psalm 30 describes what seems to be an experience of healing after serious illness. 

You’ve likely heard its lines before—at least some of them; it’s the psalm with which traditional Jews open the morning prayer service on Shabbat and weekdays: 

A mizmor/psalm; a song of dedication of the House/Temple of David.

A-donai, my God, I extol You for You have lifted me up and not allowed enemies to rejoice over me! 

A-donai, my God, I cried out to You and You healed me.

A-donai, You lifted my nefesh/my being from She’ol. You revived me from descent into the Pit. 

Sing out to A-donai, all who are devoted, full of hessed/lovingkindness — praise/give thanks to God’s holy name.

For God is angry but a moment; life is God’s favor! Weeping may linger for a night, but at dawn, joyful singing rises up!

In my tranquil moments, I said, “I will never be shaken,”

for You, A-donai, as You please, You made me firm as a mighty mountain, and when You hid Your presence, I was terrified.

To You, A-donai, I call and to A-donai, I appeal:

“What gain is there in my blood, what value in my descent to the grave? Will dust thank/praise You? Can it recite Your truth, declare Your faithfulness?” 

Sh’ma/Hear, A-donai, have mercy on me! A-donai — be my help!”

You turn my lament into dancing; You undo my sackcloth and gird me with joy!

So that my whole being sings praises to You so I am not silent, A-donai, my God, I will thank/praise You forever. 

 

The death imagery in the psalm is strong — the psalmist describes illness as a time of mourning and sackcloth (v. 12), and declares (v. 4), “O Lord, You brought up my soul from the nether-world.” While resurrection is never mentioned in this psalm, the undertones of being brought back from the dead, or almost-dead, are — for me — powerfully relevant.

The psalmist’s illness seems to have occasioned a kind of existential crisis. He describes a perhaps naïve faith before falling ill (“I had said in my security, ‘I shall never be moved’”). Later, when God “hid [God’s] face” during the psalmist’s time of illness, the psalmist was “affrighted.”

Many aspects of this psalm resonate for me, and perhaps for you if you have experienced intense illness and some form of healing. The experience of illness as like death is very evocative for me. Illness can be a kind of social death, when relationships wither because we are incapable of participating in human interactions (“social life”) as we once did. It can be a death of hope for the future and how we had planned for our lives to be. It can be an emotional death — or at least hibernation — if the fear and pain and despair we feel are so strong that we shut down our emotional selves in order to survive. It can be an existential death, if our sense of security and trust and sense in God or the universe is shaken so deeply that we are left not knowing how to connect again to the things that once made us feel whole.

At the same time, the way that this psalmist seems, once healed, to move easily and unproblematically back into a trusting relationship with God is deeply dissonant with my personal experience. For me, returning to a sense of basic trust in the world, and to the ability to participate wholeheartedly in religion, was not something that happened naturally; it took nearly a decade of rebuilding.

Where I do relate, once again, to the psalmist is in his closing line, about gratitude and thanksgiving. I do not believe in miracles in a supernatural sense, and I am not a person who is inclined to throw around the word “miracle” even in a metaphorical sense. And yet, when I recall the pain and hopelessness I experienced during my years of extended illness, “miracle” feels like the only adequate term to describe the life that I find myself living now — as flawed and tempest-tossed as it continues to be.

When learning this psalm at Yeshivat Hadar, the progressive yeshiva in New York, a classmate of mine made a comment that has stuck with me: Perhaps the first clause of the last verse is a direct antecedent to the second. That is to say, perhaps the psalmist must continue to give thanks to God for healing him, because only through continual thanksgiving can he maintain a live and palpable sense of gratitude, as he returns to his life of health and relative stability.

A final note: While the main focus of this narrative is the experience of healing, I still live with a disability (and by the way, though it often causes me suffering, it is emphatically not a tragedy). The relationship between disability and the concept of “healing” is complicated. Many disabled people do not want to be healed of their disabilities; they rightly remind us that physical well-being can take many forms, and that society must work to accommodate disability. At the same time, chronic illness and disability often cause suffering that cannot be alleviated by social change — and frequently, in these situations, physical recovery is either unlikely or entirely off the table. How, then, do we talk about healing? This question has no simple answer. For me it’s helpful to focus — as I have in this piece — on emotional and existential healing, which intertwine with, but do not depend upon, physical healing. Additionally, I try to think of healing as meaningful and worthy of gratitude even when it is partial or temporary, and even as a part of me still yearns for full redemption. 

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Jessica Belasco is an alumna of Yeshivat Hadar, the Dorot Fellowship in Israel, and the Pardes Institute of Jewish Studies. She brings a disability voice to spirituality and Torah, works to make Jewish communities more accessible to people with disabilities, and creates spaces for nuanced conversations about the disability experience. She is the co-founder of Anachnu, a Jewish disability organization founded on principles of disability justice and Torah; www.anachnu.org.