Grief is a tangle, but experts claim it comes in stages. According to the original Kubler-Ross theory, people experience grief in sequential periods of denial, anger, bargaining, depression, and acceptance. Later theories modify its stages to include shock, testing, upward turns, and working through it, but all of these parts constructing the mess of emotions that encompass loss are wrong. People are not linear. We are threads, jumbled together, and trying not to unravel.

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THREADS: Denial, Bargaining, and Hope

I've waited months to see Dr. G. Regular doctors started calling my spine condition “too complicated for their practice” a long time ago. I've spent years floating from specialist to specialist, looking for someone unafraid of tackling adult post-op scoliosis, a bucket of hardware, and a long history of spinal fusion surgeries, but Dr. G is supposed to be the best in the scoliosis field. Dr. G’s patients sing his praises, and Dr. G’s name is mentioned in every scoliosis Facebook support group I’ve ever followed. Dr. G will know how to help me. Dr. G will stop the pain. 

So, three months after initiating the process of making an appointment, my feet swing in anxious circles as they hang over the side of the examination table. My fingers absently rub the edge of the hospital gown I’m wearing; I feel exposed even though my husband checked that it was properly tied in back for me. He is poking at his phone in a nearby chair. I feel like he is a mile away, but maybe all people feel like they’re at a distance in exam rooms. A patient is a strangely singular entity that simultaneously demands attention while dreading it.

One of the worst things about seeing a medical specialist isn’t the wait to get in; it’s the pressure that hits once you’re about to see the doctor. I know my reasons for seeing Dr. G are valid, but first, I must prove I am worth his time. It’s a peculiar kind of hurdle people with chronic conditions jump over year after year. We know we need to see the doctor because we are in pain, but a statement of pain is never enough. They want proof. They want broken hardware and fractured bones. They want slipped discs and evidence of infection. If I am not literally falling apart, I am not worth their time. 

I will not tell Dr. G that I have avoided popping my back for a week before this appointment. He does not need to know I have denied myself over-the-counter painkillers or natural muscle relaxants like valerian to help soothe my aches. I must be in the worst condition possible if I want to be taken seriously. I haven’t even asked my spouse for a massage, something I typically beg for nightly. This is a test, and I need to pass it.

Pain has become a source of doubt in the medical world since opiate abuse hit the news. Over one hundred people die per day from opiate overdoses, and it is estimated that the reason for this high number is because patients are prescribed more painkillers than they need. Many of these leftover pain drugs are sold illegally. So now, doctors in most states will only provide about a week of painkillers per surgery or injury. That puts those of us with chronic pain conditions in an unfortunate position. Doctors don’t want to deal with the paperwork and legal hoops that it takes to prove that consistent medication is warranted, so they send people to pain management clinics instead.

The quality of care oscillates wildly in these facilities. Patients loiter in lobbies and meander in hospitals like herd animals while they wait for pain clinics to sift those genuinely in need from the wolves that wait seated in endless rows nearby. People groan and low their discomfort loudly; like they think that the louder they are, the more honest their condition will appear. It’s been ten years since my last surgery, and it should not surprise me that the doctors wonder whether or not I need to be culled. Still, I’m dismayed every single time they doubt me. 

My medical history should ensure a diagnosis of permanent pain, and in fact, most of my doctors acknowledge it as part of my reality. But each new doctor demands they rediscover proof one more time. Each time, my integrity feels questioned. I’m not here for drugs; I’m here for help. I refuse to even think about the pending medical bills. 

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THREADS: Anger, Bargaining, and Hope

When Dr. G’s physician assistant enters and tells me I will only be speaking with her, I try not to show that I find this off-putting. I sent his office all of my records, but I know none of my files hold continued evidence of the physical damage that will secure a meeting with him. Medical records are the ultimate resume and meeting with his assistant means that he isn’t sure I am qualified. I push that knowledge to the back of my mind and tell myself not to give up before the appointment even begins. I have to try. 

The assistant smiles as she introduces herself. She is young, maybe in her late twenties. She shakes my hand and tells me she is going to ask me a few questions. Her spine is straight. 

“Why are you here today?”

I want to point out that she should have read my file before she came into the room, but I have to put on my A-game. If I am perceived as difficult to work with, they will drop me flat. Plus, her question is standard procedure. 

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THREAD: Pain, Bargaining, and Hope

I tell her about the popping sensations and sounds that come from my hips and neck. My hands and feet tingle, and sometimes they are numb. I don’t mention the pain directly. I’m afraid that will raise a red flag. Instead, I talk about the falls I’ve unexpectedly taken. The first one happened at the gas station when I tried to step over the gas hose and, between my brain and leg, the message went awry. I fell face-     first onto the pavement and my calf was bruised for months. I needed x-rays, and the emergency physician told me to follow up with my spine doctor. I hadn’t called because the prospect of trying to get in to see a specialist was too overwhelming. That was months ago.

The next time, it was in the Walgreens parking lot. I’d run a simple errand, picked up almonds and dryer sheets inside, and I was opening my car door when the same leg abruptly buckled. There was a brief moment of flailing; I’d grabbed the car door but still fallen, this time leaving wrenched muscles and a large forearm bruise instead of a slow-spreading contusion across my calf. 

I was embarrassed and got up quickly both times. It was only when I was safely inside my vehicle, door closed, and engine on that I let myself scream. Then, after some struggle, the sensation of numbness spread, a disconnect that demonstrates the mind’s refusal to feel the injury. This is a technique chronic pain patients practice. We imagine our bodies separate from our “real” selves. You cannot hurt if you do not have a body. “This is my body, not my mind. This is my body, not my mind.” Mental health experts call it a form of willful disassociation. I’d driven to my destination, iced myself down, and stared in wonder as tendrils of blue and red seeped in dense rivers beneath my skin. 

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THREADS: Denial, Depression, Guilt, and Hope

Both times, I laughed about it later. I didn’t want anyone to know how much it frightened me to feel my leg weaken, to know that it could fail me unexpectedly at any moment. The second fall gave me symptoms of a mild concussion. That was where my spouse drew the line. I could deny what was happening all I wanted, but it was time to see the doctor. What if it happened on the stairs at work? What if I hit my head? He had rubbed his hand up and down my bruises trying to disperse the blood and frowned as strong fingers passed over purple blooms beneath my skin. I’d watched the lines on his forehead and felt guilty. Had he known he was signing up for this when we got married?

I focus on the assistant as she listens to my symptoms with polite but detached interest. She takes notes on her computer as I talk, and I am left feeling like I am rambling a list of complaints into a void. I hate this feeling. I was raised in a household where whining was frowned upon, and even though I am keenly aware that my endless accounts of discomfort are far from whines, the desire to downplay my concerns is hard to resist. The less she makes eye contact, the more I want to crater into myself and shut down. 

This is why my husband attends these meetings. When I begin to disengage, he takes over. He lists things he’s noticed me doing around the house, gestures I never knew he observed: I hunch when I initially stand up; I need a moment to let my spine settle when I lay down at night before getting comfortable; I can only walk for about an hour before I start to feel pain. The observations surprise me. I did not realize he spent so much time evaluating my condition. It’s a full-time job for both of us. 

My uncle Byron was disabled. He hurt his leg in the Second World War. I only remember meeting him once, but as he sat in a small chair and talked to my mother, my young ears had found it impossible to listen to him. His leg was round and red, swollen with excess fluid and varicose veins. He walked using a cane. Later in life, I would learn that he loved a woman terribly when he was in his thirties. When she told him she wanted to get married, he’d ended the relationship by explaining that he could not saddle her with a broken man who would always need care. How could she live her life if she was always managing his? She had moved on, married another man, and had children. It tore him apart, but he always said he’d done the right thing. Though I do not advocate for Byron's choices, I recognize the internalized ableism. I do wonder who my spouse would be if he did not have to care for me.

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THREADS: Pain, Depression, Denial, Anger, and Hope

In the disabled community, we call the people that tend to us caregivers. They pick us up from doctor’s appointments, hold our hands through diagnosis, manage our homes when our symptoms overload our functionality, and feed us when we are too tired to move. I want to say more, create some magical adage that does this role justice, but it’s hard to put into words. It’s the acts of service that stand out instead.

It’s him calling my father after a failed myelogram, when needles were bent on my tailbone and over fifty insertions of six-inch steel could not pierce through my fusion mass, but damn, if that doctor wasn’t hell-bent on trying. My back felt like raw meat, beaten and bloody. It throbbed and spasmed, because why stop a procedure because you hit a few nerves? 

Our relationship was only a year old, its infancy still soft and round, and I could hear the fear in his voice while he spoke. “Yes, sir. It didn’t work. They tried for over an hour, but they could not get the dye in to take the picture… Yes, she’s in pain. No, they will not try again. She’s covered in bruises...” Hushed voices. I closed my eyes and slept.

Five years later. He held me while we sat on the floor of our bedroom, and I tried to keep myself together. I’d fallen into a deep depression. There would be no babies for us because my spine couldn’t support one. All of that titanium, but not enough to keep a child safe. He did not want children when we were married, but I later realized I did. The emotional toll of the loss hurt. I was and am continuously conscious of the burden I ask him to carry as a partner. The loss of a fictional child felt like too much. 

Another scene, another year. I was scrubbing the bathroom floor tiles on my hands and knees. The space had recently acted as a quarantine zone for sick cats, and the floor was dirty. Over a week had passed since the worst of the illness. I could have mopped, but it wouldn’t achieve the deep cleaning needed. 

He found me scrubbing furiously at a stubborn spot. His sigh was pointed. “You know you are just going to hurt yourself.”

“It has to be done.” I tried to sound upbeat. I was having a good day, so I felt fine.

“You know you’ll be in pain later.” He was annoyed. “I’ll get to it.”

“Yeah? When?” I snapped. It took prodding and negotiating to get me to yield. We both ended up tired and angry. I wanted to be capable of doing something as simple as cleaning my home, but I was dependent on him to handle it. It was a hard truth and one I will spend a lifetime discovering. Similarly, he stands to lose a lifetime reminding me. 

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THREADS: Pain, Shock, Testing, and Hope

The assistant nods as I finish recounting my symptoms, occasionally frowning and typing out a new note, occasionally standing and asking me to move this way or that. Once the initial Q&A portion of the exam is completed, it’s time for the physical evaluation

“Now, before we begin, how is your pain today? Can you rate it on a scale of 1 to 10?” 

Of all of the questions I am asked about my back, this is my least favorite. 

“Umm… 3?” I pose it as a question, because I honestly do not know. I have experienced a 10 before. I hallucinated, growled, and shrieked. It’s my worst memory. After that experience, nothing comes close. How am I supposed to rate my pain today in comparison to that? The average person thinks they know 10, but fortunately, their bodies will never take them to that place. My 10 is not their 10. My 3 is akin to their 6. I would explain this to her, but I know that to her ears, I will only sound like I am trying to inflate my condition. 

She asks me to raise one leg and then the other, to move my neck from side to side. She has me walk across the room and notes that my shoulders are imbalanced. She has me sit and presses on my big toe while I try to raise it.

Little happens.

I try again, gritting my teeth. 

I barely manage to make her hand budge. 

It’s news to me that my muscle control has gotten weak. No wonder I am falling. 

Casually she asks, “You have neuropathy, right?” 

“I do.” The nerves leading to my legs were compromised after a surgery, and I had needed another procedure to decompress them. I still can’t feel my toes properly. Sometimes, they burn. Sometimes, they spasm. Sometimes, they may as well not be there at all. 

I speak up. “My leg was weak for a while after surgery; I used to drag it and needed a chair for a while. After the decompression, I recovered… mostly. It hasn’t been this weak since then.” I have to make sure she walks away from this appointment knowing that fact. This is unusual. However abnormal my normal is, it is not like this. 

She nods again, distracted, and has me perform a few more movements. I am sent for x-rays. The radiologist exhales a long, low “wheeeeeeeew” when he sees my images. I return to the exam and sit with a silent spouse to await the verdict. Will I be seeing the actual specialist today? Ever? What is causing my limbs to weaken? Why the increased pain?

It is a long wait. 

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THREADS: Denial, Bargaining, and Hope

I am an impatient patient. I deny the root of the title that is thrust upon me. I imagine if the number of hours I have spent waiting in doctor’s offices were ever added together it would form an ambiguous blob of stretches, long lengths of timelessness spreading outside of myself into infinity. 

Anxiously, I conduct a mental tally of the exam. Did I leave anything out? Was there anything else to share? I have done all that I can to prove that something is going on with my spine, and now, the verdict is out of my hands. 

As the minutes pass, my legs once again swing in nervous circles over the side of the examination table, and I remind myself I want them to think about me. I want them to stare at the lines and Cobb Angles drawn across my x-rays. I want them to invest an equal amount of time defining my diagnosis that competes with the amount of time I spend managing its consequences. 

In the hallway, I hear a commanding voice speak. I assume it comes from Dr. G. His voice trails down the hall. Papers rustle. An x-ray light board switch clicks on and off. Nurses laugh and share information. My husband has taken out his phone and is mentally elsewhere. I am unable to focus on anything. 

Time spent waiting for news of this nature is lost time. There is no way to recover it for myself. It belongs to a physically able physician’s assistant and the minutes Dr. G is willing to spare on his way to a different patient that has already met his qualifications. 

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THREADS: Shock, Anger, Denial, and Depression

When the assistant enters the room again, the door swings open quickly and her movements are matter of fact. They stand in sharp contrast to the surrounding dead space. I sit up straight and watch as she places my x-rays on the display, pulls up records on the computer, and turns to look at me. Her expression is set, eyes fixed just over my head, and her hands grip the small desk behind her as she leans against it to consult with me. My husband puts his phone down and leans forward. I am overwhelmed by a sudden and brash sadness.

In measured tones, she explains that nothing appears structurally wrong with my spine. All of my hardware is where it should be. No breaks in my fusion mass or vertebrae are present. On the surface, for someone who has had six major spin surgeries, I look fine. 

“But what about the pain and weakness?”

“Well, that’s the tricky part. Your surgeries were traumatic experiences, and you underwent a lot of invasive damage while your spine was fixed.”

I know all of this, so I nod.

“Considering how well off your hardware looks, it’s likely that your pain is a symptom of your brain rewiring itself. You experienced a unique amount of trauma, and that has resulted in your brain permanently firing for that trauma. Technically, nothing is wrong. This is good news."

I bristle. I should have known to expect medical gaslighting; it happens to chronic pain patients all the time. But I thought this doctor would be different. An all too familiar ache builds behind my eyes, and I swallow. I will not let this woman see me cry.

My husband opens his mouth to speak, but I cut him off. “Are you saying that the pain is not actually there?” He nods in curt agreement with me. He has the same question.

“It’s not that the pain isn’t there. It is. It’s that it is coming from somewhere different than you think it is.” She continues on, explaining a study about shocking frogs in their legs and how eventually, even without the electric pulse, the frogs reacted to touch like it was pain. I push aside my horror at the brutality of those tests, and I ask her to explain again. I am unable to accept the news.

“Your brain has PTSD. The pain is permanent. It’s part of how your brain functions now.”

Her words are thrown out quickly like cheap fast food. I gulp and fixate on my feet; they hang still beneath me.

My spouse pitches in. “Can anything be done about it?”

“No, unfortunately. But the good news is that her back is stable.”

“There are no injections or therapy options?” His tone is thin, restrained. 

“Well, how about we try physical therapy? I do think there can be some relief from strengthening the area.”

I drift again, dismayed. How many times have I tried therapy? How many times has some foolish physical therapist injured me by treating my spine like it has a normal injury? I clench my teeth and allow the meeting to finish. I’m too disappointed to offer much protest.

Just before the assistant leaves the room for the last time, I shake myself out of my haze. “So, I will not see Dr. G?”

“No, he doesn’t think it is necessary.”

“... Okay.”

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THREADS: Denial, Anger, Numbness, and Depression

In the car, I am unable to stop crying. I should feel glad that my spine is fine, but I cannot process that fact. All I can feel is rejection. I tried so hard to find help, and now that I was able to locate it, I am not worthy of its attention. 

My husband is angry. “You can’t tell me you actually believe them?”

“Maybe it is permanent.”

“Your brain is fine. It’s their brains that need to be rewired. They didn’t even try to explain the falls.” 

“Yeah. But if my brain is fucked up, maybe that is why they are happening.”

“No. You just got thrown a load of shit. They don’t know what is wrong and they cannot be bothered to take the time to find out. It isn’t “easy,” so they aren’t interested.” I appreciate that he is trying to make me feel better, but I can hear his frustration with me in his voice, too. This diagnosis does not bode well for our future, and we both know it.

For a brief moment, his words kindle a deep rage in my chest, but exhaustion quickly overwhelms it. What is the point in fighting when the battle is endless?

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THREADS: Anything but Acceptance

It is impossible to normalize grief, especially when a person is composed of helixes. Take my spine for example. It twists within itself and overlaps to such an extent that doctors have inserted rods, screws, and bolts to urge it to obey the rules of what health should look like, but despite their efforts, order is elusive. Chronic conditions mean straight lines no longer apply. Grief becomes a knot composed of survival.

It has been a year since my diagnosis. Three doctors have now told me the pain is likely permanent, but the last one, an old man content to retire from his practice in the recesses of rural Central Texas, took his time and discussed fibromyalgia with me. All of the symptoms align with my experiences, even the PTSD and weak limbs. 

I refuse to feel hope, especially since there is no way to stop the pain. I wish my prognosis were different, but with that said, people are not that easy. I would rather my condition was defined as idiopathic than accept its reduction. I am infinitely more than a human suffering from a peculiar brain quirk. 

Grief is messy. Much like my spine, it doesn't obey the rules. Even if that precious final stage, acceptance, eludes me, who says I have to mourn according to a timeline? We adapt to grief's permanence. We get tangled in it. We form knots. 

We survive, because we must.