Tag: Pain

The Last Resort

~ Kai Raines ~ Leave a comment

Chronic pain is a funny thing…and by that, I mean a pain in the ass. Now that is funny because my ass doesn’t hurt at all. It’s a pain in my neck, my low back, my left arm and hand, my hips, knees, and feet. That’s all. It’s on my mind today because I woke up at 4 this morning. I woke up because I was in so much pain. I tried going back to sleep until 5:22 and then thought, “Fuck it” and I got up. I feel like I’ve lived a whole day already and it’s 9:53. Might be a long day.

Pain is on my mind because Friday I’m going to a new orthopedic surgeon to discuss my elbow. That is never my favorite conversation. When I fell and broke my arm, into several pieces, and dislocated my elbow two years ago, the surgeon told me that it was “reasonable” to try one more time to put a new implant in and see if it would stay in place. After that he said he would recommend removing the replacement elbow and putting nothing in its place…an arm with no hinge. He told me, if that occurred, I would still have partial use of my hand. And he said his patients that have had their artificial joint removed, without replacement, are happy with the outcome because they have no more pain.

Sit with that for a minute. No more pain…go from daily pain, that ranges from frustrating to intolerable, to none. None. Nada. Zippo. It’s hard for me to even imagine. It has been a long time since my elbow didn’t hurt. I should mention the reason for a new doctor is not because of a problem with the old one…and he isn’t old at all. My insurance changed, and he is no longer in network. That is very sad. I thought about changing my insurance back but the costs of everything would be so much higher, I can’t do it.

I got a recommendation for an “excellent” orthopedic surgeon from a physical therapist I trust. PT’s know all the best doctors…nurses do too. So, I made and appointment and waited three months to see him. Let me back up and say that my elbow has been hurting for the past year and a half. I know the replacement is loose. How do I know it’s loose you wonder. Because this has happened three other times. And those three times I have had revision surgery. The humeral component, in my upper arm, was removed and replaced…hence the term revision…in case you’re wondering…you’re probably not. I should also mention that I can’t always straighten my arm anymore because it gets stuck. When that happens, I push my arm and force it straight. It feels like trying to shift gears on your bike…but the chain is clanking around trying to connect…and the peddles don’t work until it does. My arm grinds and pops when I push it straight. Not my favorite feeling.

So, for a year and a half my old doctor has repeatedly asked me what I wanted to do about my elbow. I have always told him “Nothing.” I haven’t felt like the pain was bad enough for a surgical intervention…and that is the only intervention left. That is until now. Because now I can’t stand the pain anymore. I feel like it’s taking a toll on my body and my mental health…because I feel hopeless. Like I’ll be stuck with this pain, grinding, and popping forever. That’s depressing.

Okay, so now, back to my story…I went to see the new doctor. He said my X-rays looked “good” and my arm looked “good.” My arm is hugely swollen and it looks deformed. If that’s your idea of “looking good” then there’s a problem…we have a problem. Aside from when I broke my arm and dislocated my elbow, my X-rays have always looked fine. The loosening had never been seen until I had a CT scan. I don’t know why that is…different imaging or better imaging, I guess. I just know it’s true.

I told the doctor what my previous orthopedic surgeon said, and he looked at me like I was a lunatic. I felt as though he thought I was casually discussing having my elbow taken out…like I’d talk about what to have for dinner…as if it’s no big deal. It’s a fucking huge deal. I can’t begin to describe how big of a deal. If he had asked me, I would have told him it’s taken a year and a half to even consider this possibility. And I would have said that I’d been practicing doing everything one handed to get an idea of what it would be like. He actually said, “You know you won’t be able to use your arm because you won’t have a joint. Your arm will just hang there.” WTF!? Are you fucking kidding me? Thanks for mansplaining that to me because, dopey me, I didn’t know an elbow was important. That’s what I wanted to say but I refrained. He didn’t ask me anything. He spent all of five minutes with me before he referred me to a different doctor. He said if I needed my joint removed that would be the guy to do it. Obviously, I was a problem he didn’t want to deal with, so he sent me away.

He didn’t ask about the history of my elbow or the eleven earlier surgeries, including the three revisions and the infection that took six months and three surgeries, including several months with no joint, to treat. He asked nothing. I felt invisible and pushed aside. Disregarded. Like I was a problem he didn’t have time for…or any interest in solving. I was depressed, and it took me three weeks to even be willing to make an appointment with the next doctor.

This decision is not because of one failed elbow replacement…every replacement has failed. This is the fourth failure…fourth and final. I cannot keep doing this. This is a huge decision and it’s a painful decision…one I’ve considered for a long time. This was not an easy decision, and certainly not one I’ve taken lightly. It’s scary. I feel afraid. But I cannot live with the constant pain or continue to have my joint locking…or dislocating. My arm isn’t functioning now even with the joint.

So, is it better for me to be in constant pain, needing ever increasing amounts of pain medication. And I need stronger medication because what I have doesn’t work anymore. Is it better for me to lack sleep because of pain. Or to dread each new day because it’s intolerable. Because that’s what chronic pain does…it causes dread. Dread and fear and anxiety. It wears you down day by day…little by little.

Chronic pain is a challenge because other people don’t necessarily see it. I get up each day, take care of the dog, I cook meals, run errands…all the “normal” things. Someone observing me would not see my pain. It’s not like I walk around moaning and crying. I’m not big on complaining…it doesn’t help anything. But because you can’t see my pain you might not know it’s there. That’s a difficult thing about chronic pain…it is frequently invisible. Just because you don’t see my pain does not mean it isn’t there or that it isn’t significant.

I am a strong person. I know that. I’ve been through a lot of shit…and I keep going. In my family, I was praised for being strong. Praised for not complaining and for my ability to handle anything. I wanted the praise, and I wanted to be strong. And I am.

Now I’m learning it is not a sign of weakness that I need something done to help me. I’m not failing because the pain is too much to bear. I can’t take it anymore. I’ve dealt with it for over 7 years…that’s a long fucking time. Maybe my strength now is the realization that I need help. Maybe it’s finally having the ability to ask for help. To seek help. I wonder if at some point it goes from strength to stupidity to just pretend everything is fine when the pain is unbearable. Maybe that’s just denial…or fear…or both.

Chronic pain is a reality for millions of people in this country…including people you know. Chronic pain isn’t just physical pain. It’s also emotional pain. The fear. The depression. Feeling disregarded or disrespected. Dismissed…tossed aside for someone else to deal with. Told, without words, to be quiet and stop being a problem. Be an obedient and quiet little girl. Don’t make waves. Listen to the doctor…he says nothing is wrong…and his opinion is the only one that matters.

Now I doubt this doctor intended all of that…at least I hope not. He could have been having a bad day. I have no idea. But I am not just an elbow. The elbow in question comes with a person…me. And I need help. Seeing a doctor when you’re in a lot of pain, or there’s a problem…or both, is a very vulnerable position to be in. I was there because I needed you to help me.

I came to you sad and scared and I took the risk of sharing that with you. I came to you vulnerable. Don’t send me away. Don’t get me out of your office as fast as you can. Don’t mock me by imitating what my arm will be like without a joint…flailing it around, as you speak to me like I’m crazy. Understand that my pain must be fucking awful if I’m willing to consider such a drastic last resort.

When I come to you and tell you who I am, listen to me. And when I share my pain, believe me. I’m taking a risk to tell you…don’t make we regret it. Because then my pain will go back underground and remain buried until I’m willing to take another risk, if I ever am. Don’t teach me it’s not safe to trust.

In the end what matters is how we love people. Love the people in your life who are in pain. Believe them. Listen to them. Divine is the task to ease pain. Let’s ease each other’s pain…that is divine.

She was there and then she wasn’t….

~ Kai Raines ~ Leave a comment

Dementia is fucked up! I realize anyone reading this would probably respond with a “duh,” but I mean it is seriously fucked up. My mom has dementia. I’ve written about it before, more than once. It’s been hard, it’s been exhausting and cruel. She’s been cruel…hateful.

My mom had Covid in January. She was in the hospital and then a rehab facility, just until she was past being contagious. The assisted living home where she lives didn’t have the resources to keep her isolated for several days. They don’t need a bunch of 80- and 90-year-olds getting Covid. While she was in the hospital and rehab, she was mean as shit. She was rude to staff, which is unusual for her because she likes all the staff to love her. That way she can tell me how everybody, except me, thinks she’s sweet all the time. I tell her no one is sweet all the time…that may not have been the right response. One day at the rehab, when I was leaving, she told me not to bother coming back. She’s super sweet alright.

She was finally sent back to her assisted living home, and she settled back in. I purposely did not go see her the day she was transferred, so she could settle in, and I could have a break. I knew she might be mad at me, but I thought it was best…and she’s always mad anyway. The next day I went to see her, and she lit up smiling at me because she was so happy to see me. WTF!? She’s not ever that happy to see me. Then she said something she has NEVER said in her life…at least not in my 63 years. She said, and I quote, “I’m happy. I’m happy, happy, happy.” And I had no response. I just stared at her for a moment, making sure it really was my mom talking. All I could manage to say was “I’m glad.” 

The real question was where the fuck was my mother? My mom is never happy, let alone, happy, happy, happy. She actually told me once she didn’t want to be happy. So seriously, WTF? Hell, if I know. My mom is unpredictable emotionally. You never know what mood she’ll be in, and her moods change in a second. So, as I spent time with her, I was on guard waiting for her to turn back into herself. I’m always on guard around her. I’m afraid of her. But this version of her…not so scary.

We’ve had a month of visits that consisted of nothing but sitting and talking. One of my mother’s recurring complaints about me is that I never talked to her. I “never said a word” to her…that’s what she said. I did in fact utter words, but we did not have any kind of meaningful conversations. It’s hard to talk to her when she’s angry with me. And she always seemed angry with me. But now, now she seemed to like me. She’s never liked me.

My mom is disappointed in me, and she has always made sure that I am aware of that fact…I went to the wrong schools, got the wrong degrees, had the wrong jobs, got divorced, didn’t raise my kids right, you get the point. So, imagine my surprise when she told me what a talented writer I am and how much she loves reading my blogs. She said that they’re “very, very, very good.” I guess she likes to say things in threes. Just yesterday day she told me that she’s blessed to have three wonderful daughters. She counts my wife as a third daughter, which I am grateful for…she’s also never angry with my wife and I’m ecstatic about that. My mom even said that she feels like she’s gotten to know me better the past few weeks and that it has been “marvelous.” Talk about mind fucks!

Now you might think, “why aren’t you just happy she’s being nice?” and that’s a fair question. My mom is unpredictable and with dementia even more so. For almost two years, the dementia has taken the worst parts of her and magnified them exponentially. She’s been angry, verbally abusive, rude, threatening, insulting…she’s been fucking mean. Now it’s completely flipped and she’s all happy all the time. Could dementia do that? And I’m not saying that dementia made her nicer, I’m saying that dementia made her a different person. She was never like this…ever. If my dad was still alive, he’d be as freaked out as I am.

Its unnerving because it’s so different. It’s hard to know what to do or how to react. It’s been a few weeks now and I have finally allowed myself to enjoy her. Enjoy that she’s happy to see me. Enjoy that she thinks I’m talented. Enjoy that she loves talking to me…she tells me that now. Dementia is horrible…usually. But maybe dementia gave me a new mom. Gave me a mom more like the one I had always hoped for but didn’t have. Gave me a mom who might actually love me…and even like me. I don’t even know if it’s possible for dementia to do that.

My mom has been in the hospital the last few days because of a urinary tract infection. Since she’s been there, I was also told she had encephalopathy…try and say that fucker. It’s kind of a generic term for any brain disease that alters brain function. Encephalopathy can cause mood changes, confusion, personality changes…the symptoms are similar to dementia. Yesterday, on the way to the hospital, I was telling my wife that I was worried that maybe the encephalopathy was what made my mom nice and now that they’re treating it, she’ll change back. I told her I would be heartbroken if that happened. That would be a cruel fucking joke by the Universe. I laughed as I said it because it seemed pretty far fetched.

Now imagine that that speech bubble, from my conversation with Gayle, is still hanging in the air…The hospital called me this morning because my mom wanted to talk to me. She’s not great operating phones anymore. I said “hello,” and she started screaming at me. She was screaming that I needed to come and get her right away. And yelling at me for putting her in the hospital. I told her she was going back to her home, at Sweet Water, today. And she screamed at me for putting her there, in assisted living. She’s gone. Well really, she’s back. The nice mom was an illusion all along. My mom is back.

Turns out I am heartbroken. I just started allowing myself to relax with her and enjoy our time together. I allowed myself to open up to her…to be vulnerable. And she got me again. I feel like I’m in a whack a mole game and I just got cracked on the head hard…leaving me sort of dazed and spinning. I was not ready for this. I wasn’t prepared. This may sound awful, but I don’t want my old mom back. I want the new one. And not just for me, for her too. She was so relaxed and content when she was happy. She wasn’t worried about anything. All was right with the world. Now the world has righted itself and I am struggling to hang on. Dementia did this too. I had a moment, a tiny window of time in a life, when I had a real mom. A mom who was not my enemy. A mom who was not out to get me. A mom who wasn’t sad I was her daughter. A mom who was proud of me and told me so.

Dementia is cruel. She was there, and then she wasn’t. Now she isn’t. What a loss. That’s a devastating loss. A heartbreaking loss. Dementia did this. Taunted me with a glimpse of the mom I always wanted and then cruelly took her away in an instant. It may have only been an illusion but, right now, I’d take that illusion over reality. Any day.

Let’s be real…I’m pretty distressed right now. I’m not sure I’m going to go and see my mom today. I don’t think I can take it. Sometimes life feels cruel, and this is one of them. It’s cruel for me and my family but it’s also cruel for her. I’ve never seen my mom content, and she was. The dementia or encephalopathy allowed her to relax and be content. Maybe it was an unexplainable occurrence, but my mom was happy. That had to have felt good to her. I’m glad she had that, however briefly. It seems unnecessarily cruel for the Universe to take it back, like a bad April fool’s joke. I wonder if she can tell. I wonder if she feels the loss…feels the shift. I feel it. I wish I didn’t.

I suppose it would be easy, and understandable, if I wished she had never been happy. That we hadn’t had these few weeks of connection and understanding. Their loss sure hurts. I wonder if those brief weeks gave my mom something that she’d been without, her own happiness in herself. I think maybe she liked herself too. I hope she still feels it somehow or remembers it…that somehow it stays a part of her. She was at peace these weeks…she was peaceful. I have never seen her at peace either. So much to learn and experience, even when you’re almost 92.

And for me? For me, I had a glimpse of what other mothering could be…should be. I had a moment that I believed my mom loved me. That she thought I was talented. A moment where I really mattered. Right now, I’m not sure how to hold on to those experiences while I deal with the anger and rage directed at me. How do I go back to not being good enough? And the thing is, it’s the raging angry part of her that’s real to me, not the happy one. The happy part was like a beautiful dream that had to end. I can’t live in a dream. I had to wake up…maybe she did too.  And maybe dementia is the cruelest fucker around.

So, I am still, and I am listening…for a whisper. I’ve heard it before. It’s the whisper that moves me forward…calls me forward really. It’s the whisper that moves me forward and keeps me soft and real. The whisper inside me that reminds me that ultimately the only thing that matters is how we love people. So, I will continue to love. I will continue to love my mom. I will love her without an expectation of anything in return. I am not loving her to get something from her. I am just loving her. And I will love other people in my life and in the world the same way. I’ll love for love’s sake…not for recognition or a prize…but because in the end all that matters is how I love people…how we love people. That’s how love wins. And it must win…I really need it to win.

Strangely Grateful

~ Kai Raines ~ Leave a comment

Sometimes when people lecture me on being grateful, I want to punch them in the stomach…I never do which is a good choice on my part.  I am growing up. I’m not sure anyone can look at anyone else’s life and decide whether you’re grateful or not. I think gratitude looks different in everyone.

I consider myself a “glass half full” kinda person. I look for reasons to be grateful. I put a positive spin on things, I’m excellent at reframing, and I like to give people the benefit of the doubt. I work to be aware of my gratitude…and my attitude…which can have a rough edge at times. But sometimes shit goes down and I fear I may never be grateful again. The circumstances scream WHAT THE ACTUAL FUCK?!!! And then I find myself grateful again, despite (or in spite of) my outer circumstances. I might surprise you. I shock the hell out of myself. I’m telling you sometimes I rise…me and the phoenix…fly baby fly!

Of course, all of this is leading to a point. I promise. I have the most amazing wife. She is literally my favorite person in the world…sorry P!nk. We got married on 11-11-11. We thought that would be a lucky day and its Veterans Day, so we got married on a Friday because our friends and family were off work. And now our anniversary is a national holiday…as it should be. Last year we weren’t able to be together for our anniversary, so this year we decided to start celebrating early. The plan was the beach…Treasure Island on Friday and Siesta Key on Saturday. We packed some bubbly (beer bubbles for her and Prosecco bubbles for me) and some snacks. It was a beautiful Friday. All sunshine all day. It was in the 80’s and so the water temperature was chilly but warm enough to swim. We floated out in the water and just hung out talking…about nothing really, and everything. 

When we were getting out of the water, I noticed there was a small step up out of the water and onto the sand…created by the tide I suppose. I walk with a crutch, and I use it at the beach and in the ocean. My point being that I was being careful and lest you think what happens next was alcohol involved, I had had maybe 6 ounces of Prosecco a couple hours earlier. So, I was steady on my feet…or as steady as I ever am on my feet. I started to step up out of the water twice and stopped myself because it didn’t feel safe with the waves. Finally, I took a step and as I did the sand gave way under me and I fell. I fell forward and on my outstretched left arm, which I heard snap and felt break. As a bonus, my elbow was also dislocated. This would be the time to tell you, or remind you, that I have an elbow replacement in my left arm. My interpretation of my elbow dislocating was that the replacement was completely mangled. When I cradled my left arm with my right hand, after I told Gayle to call 911, because I was definitely not okay, I could feel my replacement jiggling around…or my bones…or both. It felt like it was in three pieces. That’s a gross feeling. Even with all the surgeries I’ve had and the years of chronic pain, this is the first time I have ever told a medical professional that my pain was a ten…and I meant a FUCKING TEN!!!! 

People on the beach tried to help me stand up but I couldn’t take the pain of them trying to lift me under my arm. Finally, they pulled me by my shorts out of the water so I wouldn’t be knocked around with the tide coming in…I think it was coming in. I was getting wetter and colder by the minute. The paramedics carried me on a backboard to the ambulance. Slight side note, they put me on a backboard to the stretcher after I suggested it. I really think when you’re in a crisis you should not have to help the professionals with how to handle the situation. I’m making fun here, but they were great and very kind to me. Initially they were fixated on the idea of putting me in their wheelie chair thing and then confused by how they would roll it in the sand. So, the backboard was a welcome suggestion…a “good idea” even. 

Once I was in the ambulance, the EMT asked me if I had ever had fentanyl (I’m resisting the urge to make a bad joke here) and I said, “Yes, and if you have some I would like it NOW please.” Look at me still polite even while in raging pain. If I was a screamer or a crier, I would have been doing so much of both. Lucky for them I learned young to be quiet when in pain. No one wants to hear all that crying and whining anyway, even if your arm is in three pieces. Luckily the IV was put in quickly and a dose of Fentanyl followed. Five minutes later I asked for more. The first dose didn’t touch the pain. After the second dose I was able to relax the grimace that had become my face. I even managed to doze some during the 45-minute drive…I wanted to go to Morton Plant hospital and the EMT’s agreed…even though it was far. They really were great.

Then I got to the ER, got jiggled around, had X-rays, and some IV Dilaudid before I ever saw a doctor…at least I don’t think I had seen a doctor…my memory has a lot of fuzzy places. So, imagine my surprise when the doctor came in and said my arm was broken…that’s not the surprising part…wait for it…He said, “We’re going to admit you and you may have surgery tomorrow.” Now maybe I should have been prepared for that, given the circumstances, but I was not…not even a little.

Shortly after the doctor came in, I was moved to the surgical floor where some angelic nurses helped me change out of my swimsuit. I told them to cut the top off because I was not going to be lifting my three-piece arm to undress. They managed to get it off of me pretty easily, and without scissors. Turns out I had half of Treasure Island in my swim shorts. And that is the danger of pulling people, by their shorts, through the sand. Sand went everywhere. You could have built a small sandcastle in my room. I felt bad because someone from housekeeping had to come and clean it up. I just kept apologizing.

I did not meet my orthopedic surgeon until the next day. Dr. Andrew Boltuch, who my sister says is “too pretty” for her. There was more than one nurse who asked who he was after he left the room. He is very pretty…even a lesbian could see that. Not only is he pretty, but he’s also THE GUY for elbow replacements around here. Talk about serendipity…by the luck of who’s on call, I get the best specialist in the Clearwater/Tampa area…it might be all of Florida…or the United States…or the Universe! It’s hard to know.           

If you follow me, you know that I’ve had a lot of elbow surgeries, ten in fact. There have been repeated failures of the humeral component of my elbow replacement, and it has been revised four or five times in the past couple years. Including once when my joint got infected after surgery because of a sloppy stitching…and by that, I mean they left a fucking hole in my arm. That one surgery turned into three additional surgeries. Back to my point, my elbow is complicated. Even I know that. Dr. Boltuch told me that he had ordered a new humeral component with a longer stem so that it would go up beyond the fracture. He also ordered two cadaver bones to use to reinforce the fracture. So, there was no surgery Saturday. It took until Tuesday to get all the parts to put me back together again.

Tuesday, November 14th, I had a 6-hour surgery that began at 4:00 pm and ended at midnight. I realize that’s eight hours but that includes the getting me situated, asleep, sterilized, and then stapled back together parts. I love my doctor so much because whenever we’d ask him about the surgery, he’d think for a minute and then say, “It was so complicated.” I am hammered, glued, and nailed into place now. And except for the obvious healing pain, my elbow feels good. Better than it has in a couple years.

Now you may wonder, after ten surgeries and multiple revisions, why would I even consider having another implant put in. That’s a fair question and one my wife and I both asked. The doctor said he thought it was reasonable to try one last time with the new component parts and then if this one failed, he’d take the elbow replacement completely out. I would then be fitted for and wear a brace on my left elbow all the time. He said I’d have minimal use of my left hand. He also said that patients who have had that as their outcome are happy with it because they aren’t in pain anymore. Imagine that…no more pain. It made sense to me.

A small issue I haven’t mentioned yet is that the humeral component of my left elbow was already coming loose. When I would move my arm, the joint wouldn’t line up correctly and so I’d have to move it around until it was back where it was supposed to be. It was excruciating pain…although I only gave it a 9.5…because something could always hurt more…right? Anyway, I had an appointment with an orthopedic surgeon set for January to try and find out if anything could be done for my elbow…like injections or a brace. I had been told by the Mayo Clinic that unless something catastrophic happened to my elbow no one would ever do anything surgically to try and help it. At that time, I was already in pain every day…I’d say a 7 or 8…every day…every fucking day!

Now let’s be real…so far this story is pretty depressing. “Romantic day at the beach turns gruesome.” Some headline. I did start off talking about gratitude. And I did name this essay “Strangely Grateful,” so WTF?! The Fuck is that gratitude can find us, or be found, in the least likely circumstances. I was in excruciating pain all day every day because my elbow replacement was loose and moving around in me. With my history, no one was going to touch my elbow and I was depressed at the idea of living the next forty years in increasing pain. 

Enter catastrophic event…unplanned, unforeseen, and very unintended. I was being so careful. I am always careful because I don’t want to fall. That event, that catastrophic event, saved me. In that moment the best elbow doctor in this area (or the Universe) happened to be on call and happened to spend a good amount of time figuring out how to fix me. He had the answer for the chronic pain. Either this surgery works and I’m not in pain or the replacement gets removed and I’m not in pain. There’s no elbow pain at an 8 for the rest of my days. Catastrophe, serendipity, no more pain. I am grateful. I am fucking grateful! If my beautiful doctor wasn’t married, I’d marry him…well, if he wasn’t married, and I wasn’t married…and if I wasn’t a lesbian…you get the idea…we’d never be married. I do love that man and I am forever grateful to him for helping me. I can’t even imagine how complicated my surgery was, but he was in there for six hours doing everything he could to end my pain and leave me with a functioning arm. He came to see me after my surgery at 3:00 am to make sure I was doing okay. I did finally ask him if he ever sleeps because he does work some long ass hours.

Catastrophe, serendipity, no more pain. That’s my formula. Although a huge portion of the “no pain” is working through the healing pain to get to pain cessation. There are just never any good fucking shortcuts. So, catastrophe, serendipity, work your ass off, healing pain, no pain…at least not in that moment. I suppose the danger is in thinking we ever get to “no more pain” as a permanent place of residence. The amazing thing is that the catastrophe can lead to the end of your pain. I guess maybe our lives, if we’re really living them is just one catastrophe after another, with healing happening all around and within us…all the time.

Catastrophe, serendipity, healing pain, no pain…and never forget love. None of this means anything without love. The kindness we give strangers by pulling them out of the water by their shorts, the tenderness of professionals doing their best to ease your pain, the kindness of caring for another human being, the love of problem solving and mastering the complicated…all because we can. Because it is the kind and loving thing to do. Because in the end all that matters is how we love people. Divine is the task to ease pain. Let’s ease someone’s pain every day. Let’s be real…in the end love wins…always.

**Here’s a bonus “end of 2023” special for you…a little something for New Year’s Eve. At midnight open your back door to let the old year out and open your front door to let the new year in…don’t fuck up the order or you might get the same year over again. It’s an Irish tradition I’ve been told. I know I’m ready to open the back door and wish 2023 a fond farewell. 

Here’s to 2024 and all the catastrophes, serendipity, hard work, healing pain, no pain and love we can find, and we can share. Always share the love.

Happy 2024!

I Am Fucking Exhausted…The 6th Stage of Grief

~ Kai Raines ~ Leave a comment

I did a 5-part blog and podcast on grief last year. I’m sure you know the stages: denial, anger, bargaining, depression, and acceptance. I think there should be a 6th stage of grief…EXHAUSTION. Because grief is fucking exhausting! 

My whole body hurts with how exhausted it is from pain. This 6th stage is for any loss, any grief. I’ve written about chronic pain because I know chronic pain…and it is exhausting. I’m exhausted. I woke up this morning because I was in pain, and after a full night’s sleep I am still exhausted. Every ounce of me is exhausted. 

My dad died two months ago, and I’m exhausted. Exhausted and frustrated because I don’t think I’ve even begun to grieve his loss because I don’t have the time or the energy. I boxed up all of his clothes and donated them to hospice. It’s strange packing up someone’s life and giving it away. I don’t want all traces of him to be gone. My sister and I kept things that were important to us and things we thought would be meaningful to our kids. I had a dream that my dad’s baseball cap, which has been hanging on the kitchen chair for the past year, had moved to another chair. In the dream that was my dad letting me know he’s still around. And so, his hat hangs on the kitchen chair, waiting for him to move it. I’m really tired.

My mom has dementia and lives in a skilled nursing facility. She has good days and bad days – and they are either REALLY good or REALLY bad. Today is bad. I am the enemy she fights against. She says mean and hateful things to me. She hangs up on me several times a day…and, although it’s pitiful, I’ve tried to beat her to hanging up…although I won’t just hang up on her. I try and end a negative conversation first but she’s always faster than I am. It’s exhausting. I’m tired of trying to calm her and placate her. It’s exhausting. She’s exhausting. I found myself on the couch crying and telling my wife that I try to do everything for her but it’s never enough and it’s never right. I’m so fucking exhausted. I can’t even touch any of the grief I feel about her or my dad. It would require way more energy than I have – maybe more than I’m willing to give at this moment.

This week I found out that besides a separated AC joint in my shoulder I also have a torn rotator cuff. That helped explain the length of time it’s taking for my shoulder to heal and the amount of pain I’m still experiencing. I packed up my dad’s clothes, as I mentioned, and am in the middle of taking care of the financial stuff for both of them. We’ve also been trying to move my mom to a different facility where she would have more people she could interact with. I had the move all set up until the administrator, of the current facility, decided he knew what was best for my mom and told her she should go to assisted living. Of course, he didn’t tell her she can’t afford it and he didn’t consider her safety or needs because he doesn’t know her. He won’t do the paperwork for the transfer and now she only wants to go to assisted living. So, I’m having a pointless fight with this administrator, who is overstepping his position, and my mom is refusing to move…so that’s all fucked. I don’t really know what to do, what I do know is I’m exhausted. 

I think exhaustion is the 6th stage of grief. If you’ve ever experienced grief, it’s obvious, right? Exhaustion is the overlooked stage. Maybe exhaustion is the last stage coming after acceptance…you’ve come to terms with the loss but are so wiped out. You probably didn’t even realize how exhausted you were. I think exhaustion is woven in between all the other stages. There’s denial, exhaustion, anger, exhaustion, bargaining, exhaustion, depression, exhaustion, acceptance, exhaustion. It’s exhausting just reading all of that. And all those stages come and go as they please. I’m not sure how long it takes to feel like you are on the other side of grief…maybe there is no other side. Maybe we just adapt to the loss, and it becomes incorporated into who we are.

I am learning that exhaustion does not go away just because I accept a situation. Accepting chronic pain doesn’t stop me from waking up in pain. It doesn’t end the days where I am in so much pain, I’m afraid to take a step, because I’m scared of falling. It doesn’t stop the frustration of not being able to lift one leg to step into shorts because it’s agony…the lifting and the standing on one leg. It’s relentless. Its fucking exhausting. 

Accepting that my dad died doesn’t end the work that needs to be done. There are details to take care of…I didn’t realize how many details. And acceptance doesn’t help me deal with my mom’s emotions and grief. She was exhausting before my dad died. And accepting my mom’s dementia doesn’t stop the constant phone calls and complaints. It’s 10 am and I have already been hung up on 3 times. Acceptance doesn’t change that. I am exhausted. And in that exhaustion, I am trying to do the right thing all the time. But I don’t even know the right thing all the time. I am doing the best I can, although it never seems to be quite good enough. There’s always more – more to do, more to fix, more to appease, more to be responsible for…even if I’m not.

So, I’m exhausted, big damn deal. You may even be thinking, “Go take a nap!” This is not exhaustion that a nap helps or resolves. This is exhaustion in every cell of my being. Exhaustion to the bone. Now my natural reaction to all of this is to shut down emotionally…pull myself up by the bootstraps and march on. I don’t even own boots, but on I march. I’ll keep going because I don’t feel like I have any other choice. I’ll be responsible and keep moving forward…that’s what I do. As I write this I realize, I have totally shut down my emotions. I haven’t been feeling much of anything except pain and pressure. Pain in my body and pressure to keep doing…whatever needs doing.

I shut down inadvertently. I didn’t even realize it until now, writing about grief. A grief that I know I have not even touched…yet. So, what does shutting down do for me? It definitely does not end the exhaustion. It might even add to it because I waste so much energy trying not to feel. It cuts me off from myself and from caring for myself. I can’t care for what I refuse to see or feel. It creates a barrier between me and the people I love. It keeps them at a distance so that even if they could help, I’m not allowing them to. It causes doubts and confusion. It makes problems seem bigger than they are…it can make grief seem bigger than it is…or maybe more unmanageable is a better way to put it. I am fighting what already is…everything I’ve written about is already reality. I waste my time and energy longing for things to be different than they are. Now that’s exhausting…a waste of energy and exhausting.

So, let’s be real…sometimes I feel hopeless. I look out in front of me and fear that I’ll always feel as exhausted, sad, confused, and in the same pain as I am right now. But here’s the thing, I have no idea what the future holds…not 10 years from now, not even 10 minutes from now. There’s a line in the Indigo Girls song, “Closer to Fine,” that says, “And the less I seek my source for some definitive, the closer I am to fine.” I long for things to be stable and solid…something I can hang on to, solid ground to steady myself. But everything is changing all the time. If I can release this longing. Release this need for certainty. If I can lean into what scares me, then I can allow what is to be…as it already is…without all the kicking, screaming, and fighting. And I am closer to fine.

If I can stop looking for an answer, stop thinking I need an answer to save me…stop looking for the definitive…then I am fine. I am fine because I am here in this moment, just being in this moment, and I’m fine. When I try to change the past or arrange the future, then I’m really fucked. I’m fucked because I can’t but I’m still trying to convince myself that I can. I think maybe the answer is that there is no answer. There’s not one definite answer that works for the world. One answer that everyone is looking for. I don’t need an answer. I need a moment-to-moment strategy to live my life. And here it is…Stay. Just stay. Stay where I am. Stay with whatever feeling or situation I have in that moment. Just be where I am. Just be who I am. Just fucking stay. 

I need to release myself from the idea that I can take care of everything and everyone…I actually try to do that. Release myself and stay with whatever is there. I might feel scared or relieved, possibly pissed off, frustrated, discouraged, envious, abandoned, used, manipulated…you name it and stay with it…right where you are. Acknowledge whatever is there and stay with it. Look at it. Be curious about it. Be prepared to learn from it. We learn when we stay. We learn because we stay. Stay until you don’t need to anymore. And then, as Dharma used to say on “Dharma and Greg,” put it in a bubble and blow it away. Let go.

There you have it…my 2 strategies for life…Stay and Let Go. I knew I could be brief…too bad I didn’t start here; you could have been done in one minute. Seriously, it’s not bad advice. I’m learning to follow it myself. And behind the staying and letting go, always be guided by love…and some gentleness. It takes time to learn, and grow, and change. Love yourself through it. Love those close to you through it. Love those you’re not that crazy about through it. And people you don’t know or don’t think you care about…love them too. The only thing that will change the world is love. So, get to it. The world needs love. Desperately. 

Love must win…always.