Neuropathy causes pain and tingling and pain and numbness and pain in the affected areas and can cause a person to be unable to move or function in the world in a real and meaningful way. Its bad news bears is what it is. The diagnosis of neuropathy can also be a long road as well and the person who is suffering from neuropathy is often left scared and alone, wondering for months on end what is killing them. The pain, too. The nerves are dying and that is painful in a way that can be unbearable. Then there are the choices, once diagnosed. How to manage. Therapy, pain management (pills), becoming more and more burdensome to one’s family, losing one’s sense of identity, losing one’s vitality. It’s all a bit much.
She was diagnosed about a month or so ago, after falling really ill and being unable to move one day. It was scary as shit for her wife and their children. They found her, the children, lying there in agony one morning on the floor next to the bed, unable to rise again. There’d been an attempt to go to the bathroom but her feet and legs would not work. They picked her up and put her back in bed and called for their other mother to come upstairs to help. She was taken to the hospital and didn’t come out for three days. They restored some functionality but it was going to be a long, long road.
At home again Susan Hillenbrand found herself in her bedroom once more, but now she had all the things she would need to keep herself occupied and entertained for hours on end while her family continued on with their lives around her. They were all very much a help to her and she made that very clear to them because she wanted them to know that they were appreciated and that she knew how much they were all trying, and that she felt that. They set her up real nice. She had her laptop for work and they brought her a television and books for entertainment, and she was brought food three times a day and had easy access to more beverages than she could handle. Just not the ones she preferred. The ones that got here there.
Three times a day she would get up with the aid of a walker and she would make her way around a preset track in their ranch-style home, stopping at little stations of lovely her eldest son had set up for her. The first such station was a small end table placed at the end of the long hallway where all three bedrooms were. On the table was a vase with fresh flowers (cut from the garden she cultivated out back) and a cream cheese Danish. She sometimes doesn’t make it even that far and the Danish goes all stale.
Three weeks post-diagnosis she could make the circuit, slowly, but without issue.
Her wife was helpful, too. Susan Hillenbrand had married Susan Kleinschmidt in the fall of 1985 in an unrecognized and unformalized ceremony and they’d spent seven happy years together before deciding on children and both getting pregnant in the fall of 1992. Their friends called them The Susans. Susan Kleinschmidt laid in bed for hours with her wife, talking and reassuring and encouraging and researching neuropathy and helping her to the bathroom and kissing her gently on her head in a completely unsexual way, and generally feeling sad and a little helpless, which was all completely understandable given the situation, but everyone thought that the therapy would work and that the drugs would be temporary and that everything would be much more manageable given time. But Susan didn’t have all the information. She knew the cause, of course, she knew the cause, but she didn’t know the extent of the cause or that that was an ongoing issue in the life of her wife, Susan, who was now ambulatory enough to visit the places in the home where she’d hidden away her favorite things. Susan Kleinschmidt believed in perseverance and willpower and the power of collective positivity. She believed her Susan would get better because she believed her Susan would get better.
Eleven weeks post-diagnosis her left arm went all tingly and useless and then pain like Susan Hillenbrand could not believe. Nerves just don’t die and be done with you, they go kicking and screaming, reminding the person whom they once served just how important they are. She could no longer keep up with the demands of the career she’d spent twenty years building and was placed on paid medical leave and all her clients with whom she’d spent countless hours building relationships were transferred to Jr. partners. She could no longer rise to walk her circuit and the flowers her son cut for her and the Danish he lovingly placed for her went both unappreciated and unconsumed. She no longer could stand the positivity of the wife that had had her back since as long as she could remember. She could, however, still work her remote with her good hand and watch passively the lives of others. She stayed away from comedies because something about them made her incredibly sad. For hours and hours and hours and hours she lay in her bed and she watched cable. Susan came in and Susan left. The couple talked but she couldn’t recall anything that was said. Her son would come, too, but her daughter was avoiding her, never visiting the room where she lay useless, and Susan understood this, seeing one’s mother lying broken and damaged and undetermined to get better is very scary and damaging. Susan Hillenbrand didn’t blame her one bit. If she could opt not to be around herself, she would. She was shaking again and feeling tense, which made her unpleasant, too.
There were more drugs that were supposed to help, more pills for the pain, more therapists to work on her extremities, and more time with her family. Things improved only to the extent that they could, which is to say slightly.
“Evan made varsity… just found out today.”
“Are you asleep, I can’t tell.”
“When he comes in, you need to make a big deal out of it, he’s been working so hard for this.”
“I know, I’m sorry.”
“Rodney says it’s improving, the range of motion, the pain too.”
“Rodney doesn’t live in my head, my body. Rodney doesn’t actually know what this is like. Rodney’s knowledge of actual pain, actual trauma, it’s all theoretical, learned from some book in some classroom. Rodney’s young, and handsome, and healthy, and probably fucks his girlfriend and plays basketball. Rodney doesn’t know.”
“I know. I’m sorry.”
“It’s going to just take more time, more therapy, more treatment… It’s going to get better.”
“How is she?”
“Lois is fine, she’s… Lois, you know?”
“Your daughter is how Lois is if I’m being honest.”
“What’s that mean.”
“Sullen and stubborn.”
“I know. I’m sorry.”
Five months post-diagnosis things really improved and she could avoid the whole reason she was where she was in the first place and she was ambulatory, unaided, once more. It was slow, of course, and she used walls and tables to balance when needed and every time she’d set out on her own, outside, she scared the shit out of Evan, who was insisting he be there when she made these attempts but would come home to find her sitting on the neighbor’s steps needing rest, and he would help her return home. But every day it got a little better and every day it got a little easier and every day she remembered what life was for, what its purpose was. She would remember what it was like, life, when she was a child and without care of ambition and the need for recognition and upward mobility. The simple act of moving her body for the simple sake of moving her body. She remembered why children run. They run because they can. She knew it was not the same as before and probably never would be, which was depressing but not in a way that was debilitating. Still, there are some things that she couldn’t avoid forever and only so far her trying would take her in her recovery. There’s a pointlessness baked right in. Someone told her that’s the point, but also that seems cruel to her. Also, Susan Klienschmidt knows the extent now because she had to tell her for all the pieces to fit, for it all to make sense.
The Drs had given her pills for the pain, as many as she could’ve ever possibly wanted because that’s all Drs can do when a person is in legitimate pain that will not cease without narcotic intervention. The setbacks and the regressions came again in month nine (post-diagnosis) and brought with them pain — so much pain. Her legs alternated between being numb and tingling and feeling like they were on fire. Same with her arms to the elbows and her hands. It was as if all four of her extremities were in a constant state of feeling like they were just waking up after having been slept upon. Pins and needles is kind of the thing to describe it, but it’s more like pins and stab wounds. It’s unbearable. Pills. Yeah, sure, pills, but also the reason for the nerve death too, but she was running low. There are only so many places to hide a thing and so many opportunities before the well runs dry. The pills were always next to her and where she had rejected them in the first few months, not wanting to become addicted, which was an irony to be sure, she now found herself taking them in the morning with her breakfast and with lunch and both before dinner and before bed. Evan counted them for her at the beginning of the day and laid out her proper dosage on her nightstand. But there is only so much a family can do. Plus, constipation. Plus, not being able to move again after having been so happy at regaining her mobility three months prior. Plus, the road ahead was just so long and winding that she was never really able to see its end. Never able to know if she was getting close. That and Evan’s dotting and constantly being there next to her when he wasn’t in school was beginning to bother, which made her then feel really, really guilty. Because of her, he wasn’t living his life. Because of his hen-pecking and mothering, she wasn’t fully an adult person anymore. She resented him. She was also now completely without the vodka in the back of the linen closet. And elsewhere too.
In month eleven she told her son that he was no longer wanted at her bedside daily after school and he yelled and raged at her and she told him that this was no life to share with a teenager and he needs to be out doing teenager things. Her daughter couldn’t stand to look at her for more than five minutes and that, she supposed, was the natural order of things. He placed a week’s worth of pills in the little day-divided pill organizer on her nightstand and wrote out detailed instructions for how many to take and when. The math wasn’t hard to figure out. The dosage. She lay there with the great futility of it all. It was always going to be like this, this yo-yo-ing between never quite good and really, really bad, and she found that her deadened hand of fire and pain moved of its own will, made up its own mind. The math wasn’t hard and the result would be pleasant. There would be no more pian and no more sorrow. That would all be for everyone else. And she knew that and that made her feel like an even bigger piece of shit. She did this to herself and she did it to them too. It made sense that she was where she was and going where she was going. All actions are selfish and solipsistic. All roads are the same. All destinations are equal. The math was simple. There would be no after.