Side of the Caretaker (Life With The Chronically In-Pain)

This is a companion piece to my girlfriend’s posts about her pre and post surgery experiences. She told me I should write about my experiences on the other side, being the one who cared for her, and to be bluntly honest. SO….. Here I go!

It’s been interesting, this whole ordeal. Leading up to this surgery I was surprisingly calm, I wasn’t worried or anxious. I really think it was because I believed fully that everything would go well and it would work.  But I had a moment at work the day before the surgery where I just started tearing up. I got super scared in no time at all. It was finally hitting me: my girlfriend was having her back broken and torn apart and then pieced back together in less than a day.
I can barely build a jenga tower without it falling, how can someone pull apart something as complicated as a spine and then put it back together without messing something up? What if she got paralyzed? What if she bled out? What if the surgery didn’t work?
I think at that moment I realized that no matter the outcome, something was about to change for us in a big way. Either life would get better and our relationship stronger, or it would get worse, or it would stay the same, which I think we’d both say that everything staying the same would mean things were getting worse. I tell her I like where we are in our relationship, and I really do, but I think I make it sound like I don’t want anything to change, and that’s not true. I just don’t deal with rapid change well at all. I like change to be gradual. Sometimes like any person I crave some big important change, I just want to chop my hair off or run away to Canada, but in those instances the stress I feel of not wanting to be where I am in the moment outweighs the stress of sudden change. Those moments are rare for me. I love my girlfriend dearly and I do like the pace we have, but I knew change was coming and it needed to happen. I think she was craving that too. And it scared me.
I think I was almost as afraid that nothing would change as I was that something really bad would happen to her. Life with her before the surgery could be tough. If you’ve ever lived with someone who has chronic pain, you would probably know what I mean. It’s literally like living with someone who has a split personality. On her good days she was sweet and kind and patient. She’d laugh, smile, cuddle, have fun. But I don’t know how many “good” days she actually had with me, because I know she was faking feeling alright for my sake. I know that because on some days that seemed like they were pretty good, something small could happen that ruined the day. The entire day could go from great to horrible with something simple, and that something usually involved a character flaw I had.
Lately my brain’s been doing weird things to me, and its made me more forgetful, so I’d do something like leave the stove on or I’d forget to water the plants. Something that to me, if it was forgotten, didn’t need to be a life altering problem, but to her it was something that could ruin an entire day. At the time I felt like she was just an angry person, that if her entire attitude and ability to be happy hinged on having a life where absolutely nothing ever went wrong, then she could never be happy. I felt like I had to walk around on eggshells for a long time, worried I’d break the wrong thing and make her angry. I knew I never wanted to break up with her but I was always worried she would get mad and break up with me for some flaw I considered overall trivial. It was a struggle for both of us. It felt like we just couldn’t see eye to eye on simple stuff. We agreed on big things but the little things felt like they could destroy us, which seemed stupid. Should we really break up because I ate dinner without her? Or because my clothes don’t always make it in the hamper?
It wasn’t until recently that I started realizing that’s the days she was in more pain were the days her pain was speaking for her. I couldn’t ever reconcile why she was so different one day to the next, and part of me started believing she was just hiding who she really was. It’s not until now that it’s become clear to me. Her pain would steal her words and thoughts from her. It burned all her fuses down to the last bit, used up all her patience. Her job is physically, mentally, and emotionally trying. She has to be on her feet all day which contributed to her back pain, plus deal with unreasonable and angry guests, technology messing up, vendors, etc etc.
At the end of the day she would come home burnt out, and though I know she never meant it to happen, that hard day would come back on me. Part of me wanted to say that she had no excuse to do that, you shouldn’t be rude to people or hurt the ones you live, but what do I know? I’ve never had to lead a normal life while walking around with a broken back. That kind of thing can change a person, even someone as resilient as she is. And every day she had to choose between losing it at her demanding and unforgiving job, or losing it with her caring and forgiving boyfriend. Its no wonder she got frustrated at home. It was the only safe place she could speak her mind without a gigantic risk of losing what was important to her.
She reminded me all the time that she doesn’t deserve me and that if I left she’d understand. I thought she was saying that as an excuse, the same way self-important people say “If you can’t handle me at my worst you don’t deserve me at my best” as a way to dodge the responsibility of being a better person. I felt like she just didn’t want to try at all, that being this way was just how it had to be. It didn’t occur to me that she simply couldn’t muster the strength to be anything else. I’d see her be courteous and polite at work and wonder why she couldn’t be that way with me. Its because she has to fake it at work and that takes a lot from her, and she doesn’t want to fake who she is with me, and even if she wanted to for my sake, she may not have the energy to do so.
Her pain was this monster lurking under the surface waiting to come up at the slightest slip or provocation. I imagine it like when you were a kid and you brought a basketball into a swimming pool and tried to stand on it and balance. It took a lot just to push it down beneath the surface, and then a delicate balancing act to keep it there. One slip, one mistake, one distraction and it would come scrambling up. She had to use everything she could to ignore the pain, push it down or aside, work through it. One single lapse would bring it to the forefront and take over. When she would get home to a safe place she would either relax and let her guard down, which would many days result in a simple mistake sending her into anger and frustration, or she wouldn’t let her guard down and would be restless, wanting to go out or do tons of things around the house, no doubt to distract herself and stave off the pain that would bubble up if she tried to sit still.
I think calming her mind and relaxing was probably like trying to tell a hurricane it needs to chill out, or like trying to sleep at a rock concert. Impossible, no. But no normal person could do it. I can’t imagine trying to live and be a normal person when you feel like you have a red hot iron stabbed into your spine. I passed 2 kidney stones earlier this year within a month of each other. Both times, I did not function like a normal person. I had no time for anyone’s BS, their jokes, their slowness. I did not care who I upset or how rude I was, I didn’t care what anyone thought of me. All I could think about was my pain. I laid out on the lawn in front of Covenant’s ER and stared at the sky with people driving down 19th right next to me, no doubt thinking I was insane, because that was the only position I could be in without wanting to hurl from the pain. I did not care at all. If anyone had come out and told me I was being impatient or impolite, I would have had some unkind words for them. When I was waiting in agony at the ER, I got super frustrated with the nurses running the counter because they really didn’t seem to care that I was in agony, as they called in patients who were there with just a cough or sniffly nose. They were just doing their jobs but I was furious at them, a feeling unfamiliar to me, due to my pain. You ever had a really bad headache? How very annoying are super bubbly and happy people when you can barely see straight? Imagine feeling that way all the time.
What if I had to live with that every day for years, like she has? Would I be patient like she manages to be? I can’t imagine having that pain all the time. If I did have it, I’ll bet I would let it take over and rule me at times. It’d be a lot easier than using all my energy trying to ignore the pain and be nice to everyone. I don’t know how she makes it through her workdays, with all the stories she’s told me of stupid guests with dumb requests or employees giving her a rough time. Id definitely be rude to everyone and not care much about the consequences.
I know that she didn’t want to live that way anymore. She wanted a way out. It got bad enough that surgery was looking like a better option. And so that’s what she went with.
Leading up to the surgery, she changed. Without the surgery changing anything, I noticed her changing. She got quieter and more gentle. She got horribly anxious but it wasn’t like before. It was quiet and electric, like that buzz you feel before a bad lightning storm. She seemed tired, I imagine from several sleepless nights and restless days. Sleep meant dreams and hers were nightmares. It felt like she was pushing me away still but in a gentler and less insistent way. The closer we got to the surgery, the more obvious it was that she never really wanted me to go. She just thought she was shielding me from her pain, the monster in her that had shut so many doors before.
The surgery finally came, and went. I expected it to feel monumental, some 8 hour long procedure that I’d sit and wait to hear whether they had saved her from the brink. She expected it to be a lot like the scene described in What Sarah Said by Death Cab. In reality it was more like a short episode of some comedy about a guy getting his appendix removed. She was in surgery for maybe an hour. The doctor came in and said everything went fine and nonchalantly described what he had just done, as though he didn’t realize he held her life in his hands. I’m sure that’s exactly how her parents and Mimi felt too, like this doctor was doing a life saving procedure. And in some way, whether he knows it or not, that’s exactly what it was. He was saving her from a life of pain and torment, of pushing people away to save them from her hurt. He may have been saving her physical life too; who knows what lengths that kind of pain will push even the strongest people to in order to make it stop?
The doctor told us she wouldn’t be completely pain free, but she would be much better than she was now. I felt my first pang of hopelessness. She’d still be in pain? Then what was the point of it all? This surgery wasn’t supposed to be the bandaid, it was supposed to be… well, the actual surgery to fix the issue. Obviously the disease eating her bones wasn’t gone but surely this procedure would buy her years and years of good living before we had to figure it out again. Would she be any happier at all, unless she was completely pain free? Was that her ultimate goal? Would she settle for less?
She woke up in her room and was in agonizing pain. And I felt a second pang of hopelessness. It didn’t work, I said. She’s on painkillers and still it hurts. I knew full well what they had done to her and knew it would hurt, but some part of me expected her to wake up and feel nothing, and to continue onwards with minimal pain and no major issues. Rehab and PT? Sure. But pain? Not much. Nothing some prescriptions wouldn’t solve. I spent the next two days in the hospital with her, as much time as I could. I had to leave a couple times, mostly for myself. While I was there we watched tv together and talked. I would leave to go home and play video games to distract my own mind. I was worried. What if the surgery didn’t work? What if she was always going to be in pain? What if her pain went but she was limited in what she could do day-to-day?
She had spoken before her surgery about a lot of things she was unhappy with. She spoke about moving far away, to a new environment and new life, new everything. I wasn’t ready for that kind of thing, what if she found she was unhappy with her life once she was better? So many of her decisions had been framed by the pain she felt. What would she decide when she didn’t feel that pain anymore? Or maybe worse, what would she do if she kept feeling that pain after this last effort to fix it?
These things bugged me. Tortured me even. I was either going to lose her to her newfound freedom from pain, or I’d lose her to the pain eating her up.
I found myself getting incredibly annoyed at things, and still do right now, a week later. But, not at her.
Things like her nurses ignoring her requests or taking forever to come through with them. Mad at her home care people for not communicating with her. At the hospital for wanting to discharge her before she felt she was ready. I got frustrated getting texts from my bandmates. We’re in the middle of releasing our first album, but as important as that is, I couldn’t have cared less about it. It annoyed me getting texts from people, the drivers of lubbock annoyed me more than usual. Everything bugged me. I’m not sure why. I think the pressure to be the caretaker may have been part of it, but I think that wasn’t all. Everything besides her just seemed so trivial. Like I could live without it. If it fell apart, I’d be ok. But what if she fell apart? I felt the urge to protect her, coddle her, shield her. I’ve always cared for people and want to help them, but this was different. I felt no need to push her at all, no urge to make her do anything she didn’t want to. I just wanted her to feel better.
Its hard for me to distinguish whether I did that for her sake, or my own. I want her to feel better because I care about her. But I also want her to feel better because it will make our relationship better, which will make me feel happier. On my side of things as the caretaker, this thought causes me a lot of guilt. What kind of terrible person would say he wants a sick person to get better because it will benefit himself? I’d never want her to think that I want to leave just because it’s difficult, but is it any better for her to know these thoughts I’m having? Could that hurt her? I know how selfless she tries to be for my sake. She’d throw herself on her sword if it made me happy. I don’t want to hide my thoughts from her but I don’t want her to hear them and think I’d be better off without her, or that I want to be without her.
I wonder how many long term caretakers have these thoughts. I’ve only done this for a week and there’s a definite and close end to it, unlike so many who care for people with terminal problems. She’s getting better every day and doing more and more on her own. I won’t always be in this position. But in the meantime, our relationship is being tested in new ways. For me, it’s been a shift in responsibility and caretaking. She’s always taken care of me, helped me out, cleaned and cooked, and all those other things. Now she needs that from me.
I’ve found that I actually like the responsibility. Its my chance to pay her back for all she’s done for me. Its a chance to prove I can be responsible, to her and to her family. I’ve wondered how they feel about me for a long time. I imagine I’m very different than her other boyfriends have been. It makes me happy I can show them what I can do, and it terrifies me what it would mean if I fail. Especially when so much is riding on this time, and so many eyes are on me. If I mess up does that make me human, or does that mean I’m not capable of responsibility?
I make it sound all negative, but it hasn’t been that way. When she got home and spoke with her PT, he put words to what she was feeling. She’s in pain, but it’s a different kind. If it was a headache, this is pain you got from bumping your head, not chronic migraines. Her wound is hurting but her nerves aren’t pinched anymore. She hasn’t had a headache or been dizzy since the surgery, both of which were common before it. She’s been much more patient and forgiving. She doesn’t request things from me in the same way as before. She’s much slower and more thoughtful in her words and actions. When she does get mad she catches herself quickly. I don’t see the pain speaking for her anymore. When I see the pain it looks more like a remnant, a memory that’s barely holding on. The monster has been slain and now only scattered minions and bad memories remain.
So what happens now? I see her getting stronger and healing every day. I see her happier, playful and wanting to have fun. I’ve seen glimpses of this part of her before, but they were always swallowed up before I could see them fully in the light. I’m looking forward to seeing this side of her, when she is fully healed and back to herself. Part of me is still scared to see what she looks like when she isn’t weighed down by the burden that’s shaped her life til now. Even with it she’s been an active and ambitious person, so I worry that she will be even more so now, and I won’t be able to keep up. I’m okay being lazy. I won’t always be this way but I am for now. A lot of change is coming, and I want change. I just hope the pace she wants doesn’t leave me trailing.
Facing her condition and changing her life is inspiring though. She literally had to break her back to learn how to walk anew. It makes me take a look a my own life and makes me evaluate the way I’ve been living. What do I really want? Is there some little monster driving me? Maybe it’s not pain, but fear could just as easily be holding me back as her pain was driving her. I’m very curious to see what happens when she gets better. Maybe I will get better too. I hope she knows that this whole ordeal is a learning and adjustment opportunity for both of us, and I want her to know I love her even when it’s hard to. If that’s not how love works, I don’t know what love could be!
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One thought on “Side of the Caretaker (Life With The Chronically In-Pain)

  1. Pingback: Side of the Caretaker (Life With The Chronically In-Pain) | optimistic_amnesia

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