Tag: Broken

Did I Mention My Parents Are Dead?

~ Kai Raines ~ Leave a comment

I realized today that both of my parents are dead. Dead?! WTF!? I know now why my kids never want to talk about my death, someday far away (I hope)…parents don’t fucking die! My kids assure me that they’ll take care of me and braid my hair. I ask them how long I will have been in a vegetative state for them to be able to braid my hair? My hair is maybe an inch long. It’s hard for them to imagine a world without me in it…it’s hard for me to imagine too.

I picked up my mother’s ashes today and suddenly all of this is very real…in a new way. When she died, I was in Colorado visiting my kids and grandkids and our new great grandson. So maybe things didn’t seem so real. My parents were never in Colorado, well not since 2009, so it was easy to think they were fine in Florida…maybe not my dad because he’s been gone a while but definitely my mom. As we were driving home it started to feel very real. I could feel her absence as I got closer to Florida. It’s weird to feel the absence of something, instead of the presence.

My mom had been asking to go to Bob Evans for breakfast and I never had the chance to take her…she got way too weak too fast. We ate there many times with my parents and had a lot of fun drinking mimosas and telling stories about our lives. I learned a lot about my parents there. The food is not my favorite, although if you like grease and fat pull up a chair. It wasn’t our favorite restaurant, but both of my parents really loved it.

Today Bob Evans wasn’t fun. It was sad. Sad because the reality of them being gone smacked me right in the head…I gotta start wearing a helmet. I can’t go visit my mom anymore and there are no more phone calls. We also picked up her belongings from her assisted living facility…the apartment, as she referred to it. One day recently, she asked me if I thought we needed that big of apartment. It made me smile. I didn’t really want to pick up her things, but it had to be done. My wife went with me and that helped. My sister and brother-in-law are coming this week too…I’m really glad.

I remember a cousin of mine telling me not to visit my mom everyday in the nursing home because then I would be lost when she was gone. She gave this advice after losing her father. I did not visit her every day, but it turns out you can still feel lost. I think I may actually feel like an orphan. Shit.

My parents and I had a challenging relationship…mostly my mom and me. Although my dad would always defend her. We had periods of years where we didn’t communicate at all or where my mom wouldn’t communicate with me. I’d try but after so many unanswered calls I’d give up…I guess that’s not great. I felt so rejected and every call made it worse. I guess I was protecting myself…I don’t know if that was a good thing to do or not, but I can only take so much. But seriously, I did not expect them to die. Parents don’t die. Not this soon anyway…maybe not at all. I’m okay with the fact that my parents were both ready to die. I’m just not okay with them being dead. If you’re confused, welcome to my world.

Given everything that went on with my mom and dealing with her anger, I thought I might feel relieved when she died. I’m looking at those words I just wrote and cringing a bit. You are not supposed to feel relieved when someone dies, especially your mother…that’ll send ya straight to hell. My physical therapist told me one day that I was a good person for taking care of my parents. What “good person” thinks they’ll feel relieved when their mother dies?

I thought I’d feel relieved that I didn’t need to be afraid of her anymore. I wouldn’t be wondering what her mood was going to be when I saw her. Turns out I don’t feel relieved…so my soul might be saved. I feel like I’m missing something. Like I went out without a jacket and am stuck outside in the snow. Like you know something isn’t right, but you can’t quite put your finger on it.

And here’s a strange thing…when we picked up her things no one said anything at all. No “We’re sorry for your loss” or “We loved your mom” or “We miss her.” Nothing. No comments at all from any staff. I guess they go through this all the time. Maybe it’s old hat for them but not for me. I wanted to yell, “You know my mother is dead right?!” Say something…say some fucking thing. Don’t act like it’s just a normal Tuesday. It’s not normal. Nothing is normal. My mom died. She’s dead. She’s gone.

Let’s be real…my mom died and nothing is okay. I need to learn how to navigate a world that she’s not in, neither is my dad. Am I still a daughter if my parents are gone? Who am I if I’m not busy being their daughter? Who am I when I’m just me on my own…not me in reaction to them? Who am I if I define myself without their input or opinion? Maybe we really don’t grow up until our parents are gone. Maybe that’s when we can be free enough to allow who we really are to shine…when we can come out of the shadows. I told my wife that I spent a lot of time trying to be invisible growing up. If you’re invisible, then you can’t be in trouble or wrong or bad. 

Now I need to become comfortable with visibility. I don’t need to hide in the shadows. Now I really don’t need my parent’s approval…even if I do, it ain’t happening. I loved my mom and dad. I believe they knew that…that they were loved. They had grandchildren and great grandchildren that adored them…and my sister was always there for them. My parents are gone but love continues to win. My mom wanted to be with my dad, and now she is. Maybe that’s the power of love, to take you where you want to be. 

Love is a powerful force. It’s a force that needs attention and direction. Let’s love consciously, with intention. Love is not something to do half-assed…because in the end, all that matters is how we love each other…so do it with your whole self. Love must continue to win. Always.

Multiple Diseases of the Elderly

~ Kai Raines ~ Leave a comment

The cremation place called me this morning…maybe it’s a cremation facility…I’m not sure. Anyway, they called early this morning to let me know that they have my mom and they’re taking care of her. That seems strange because she’s dead so how much are they really taking care of her? I understand that they were telling me that her body is being handled respectfully. I do appreciate that. They also wanted to ask me if I wanted the cause of death on all the death certificates or just some, what about half and half? Of course, I ordered 7 so there you go. We’re getting 4 of one and 3 of the other. I’m not sure which way so it’ll be a surprise. 

Since I had them on the phone…and a side note here, these cremation people are really lovely. They speak softly and calmly…slowly. They are as relaxed as possible, I’m sure because they are dealing with some unstable people…like me. So, since I was talking to them, I asked what my mom’s cause of death was, because no one told me, and I didn’t think to ask. She said, “Multiple diseases of the elderly.” Multiple diseases of the elderly…what the fuck does that mean? I thought they’d say natural causes because being almost 92 is a natural cause of death. Multiple diseases of the elderly make it sound like no one really knows…she was old…elderly…so check the box that covers the most options. Like a big “I’m elderly” blanket. 

I do not agree with their cause of death. My mom did have heart failure and A-Fib. She had a damaged valve in her heart because of rheumatic fever as a child. She had Parkinson’s disease that was progressing. She had a harder time moving her legs to walk and she became so unstable that she had to use a wheelchair. Her hands were shaking worse, and eating was more difficult. She had a hard time keeping food on a spoon or a fork. I know that really frustrated her. I can only imagine. I don’t think any of those multiple diseases were the cause of her death. 

Multiple diseases of the elderly were not the cause of my mother’s death. Not eating, not drinking, and sleeping were her causes of death. Maybe loneliness because she really missed my dad. Maybe that was the heart failure…failing from sadness. The real cause of death was that she wanted to die. So, the official cause of death was a “strong will.”

Now I feel confident in saying that “strong will” is not a choice on a death certificate. That’s too bad because I think it’s one of the most common causes of death for the elderly…strong will. I think that was the same cause of death for my dad. He was ready. She was ready. My mom told me that she wanted to die, and then she’d add, “Not because of you.” I did appreciate the clarification. 

My mom felt like she had lost control over her life and that all her decisions were made for her. That really made her angry. I told her that there were 3 things she controlled: what she ate, what she drank, and whether she took medicine. She controlled those things, and no one was going to make her do anything she didn’t want to. Then I talked to the staff to make sure I wasn’t lying. It was difficult for the nurses and aides who really cared for her to let her go. They wanted to convince her to eat, just a little, or take a sip of water…but they stopped. They honored her wishes, and in that way honored her. 

I do believe my mom willed herself to die. She definitely had a strong enough will to make it happen. She shut everything down and died. Strong will is not a disease but is certainly a cause of death. What are the multiple diseases of the elderly? At first, I was thinking of the obvious…heart failure, cancer, kidney, heart, lung, or liver disease, an aneurism, dementia, a stroke, and the list could certainly go on and on. My Aunt died of COPD, my dads’ parents died young of heart problems, my mom’s mom lived until 96…96 and ½. She’s got the record for sure. Her great grandchildren called her the “energizer bunny” and said that she kept going and going. 

But what are really the multiple diseases of the elderly? A “disease” is defined as an “illness or sickness characterized by specific signs or symptoms.” Seems obvious. But what about the “dis-eases” of the elderly? “Dis” is a Latin prefix meaning, “apart, asunder, or away.” The slang “dis” means “to treat with disrespect or contempt.” “Ease” is the “absence of difficulty or effort, making something less severe, or moving carefully.” Another definition is “to free something that pains, disquiets, or burdens.” 

So…apart, away, disrespect, absence of effort, less severe, free what pains or burdens us….Hmmm. Perhaps the real dis-ease for the elderly in our society is being put away or apart, not being respected as a useful member of society or a family. Maybe it’s that we want to be free from the extra burden of caring for someone in their last years. I guess it’s not that surprising since we do glorify youth in the United States. No one wants gray hair or wrinkles, so people have cosmetic changes made to themselves in hopes of looking forever young. We treat aging as a curse, instead of a natural part of life. I’ve told my wife that I like the lines on her face because I see them as laugh lines, and how could lines from happiness be a bad thing? 

When we moved to Florida with my parents, I had a plan. The plan was that my parents would live with us until their deaths. That way they’d never need a nursing home because we would take care of them for the rest of their lives. Oh, the best laid plans of mice and men…and women. For whatever reason, my mom became adamant that she wanted to be in a nursing home. She wanted to be away from me and away from my dad. She’d tell me that I didn’t want her there and neither did my dad, although that was untrue. 

We both tried to make her happy, but we couldn’t. When her aggressive behavior was too much for me to handle and keep my dad safe, I agreed to find her a nursing home. Getting her into a nursing home was a giant cluster fuck, as I have written about in other blog posts. Once she was in the nursing home she didn’t want to be there. She didn’t want to be at home with my dad and I either…I don’t know exactly what she wanted. I think that maybe she didn’t know either. That was sad.

I know that the elderly are frequently overlooked in our country. Unlike other cultures, we don’t look to our elders for their wisdom and insights about life. We don’t ask about what life has been like for them. We don’t ask about the things they’ve learned or the experiences they’ve had. My dad could tell you about every place he ate when he was traveling. When we were driving from St. Louis to Florida it was a narration of all the places he drove and where he ate the best something. I told my wife I want to start looking for places to eat when we’re driving cross country…usually I just want to grab something and get right back in the car…but I could change, and it might be fun.

I think the multiple dis-eases of the elderly are loss, sadness, lack of control, and nothing to look forward to. The dis-ease is in watching everyone you love die. You may want to live a long life but along with that comes the loss of many people in your life. My mom said all the time that all of her friends were dead. Then she lost my dad. It’s hard to go from independence to complete dependence. My mom would tell people that I made her sell her car and that she could still drive fine. What she didn’t say was that one whole side of the car was scratched because she hit the side of the garage regularly pulling in. And she was completely blind in one eye. So, she could drive but it was dangerous for her, anyone on the road, and the garage. I understand selling the car represented a huge loss of independence for her.

It’s difficult to move somewhere knowing that you won’t move again. My wife and I talk about Florida as our last move, and we hope to stay where we are. But I’m 63 not 91. I know there’s still life ahead of me and many things I want to do. In a nursing home people only leave when they die. She felt like she was waiting to die. I would try and focus on everything she still had, a big family with grandchildren and great grandchildren, and the fact that she was very loved. I think my mom was sad and felt like I put her away, even though she’s the one who put herself away. It was hard to see her sad and angry.

We have a rapidly growing population of people over 65 in this country…I’m not, but that’s what I hear. We don’t have good answers about caring for an aging population. If you have the money, you can find a beautiful resort style place for independent or assisted living, with increasing levels of care as you need it. If you are not independently wealthy, it’s not as easy. The multiple diseases of the elderly are sadness, isolation, loneliness, loss. Those are the dis-ease’s of the elderly. Those are the causes of death in our elderly. 

I don’t know how to solve the problem except with awareness. We tried to give my mom and dad a full and happy life in Florida, some days were more successful than others. I’m not sure I was always as aware or attentive to my mom’s emotional needs as I could have been. I do know I was doing my best. The only way to discover what needs to be done is to lead with love. If I am leading with love, then I am seeing issues and people through a lens of love. When we love people what are we willing to do for them? If we love our neighbor as ourselves then what actions are we willing to take? Could we befriend a lonely neighbor or just say “hi” to someone? My mom used to love to sit on the patio and watch people walk their dogs. She was thrilled when someone stopped and talked to her. That’s all it took. Less than 5 minutes. Certainly, we all have 5 minutes to give. 

Let’s be real…Everyone wants to matter…to be seen…to be cared about. None of that changes just because you’re 70, 80, or 91. We never reach a place of not needing. We thrive in connection with others…in relationships. We are interdependent beings. We all need love, and we all have a tremendous capacity to love. Sometimes we hoard our love or reserve it for special people in our lives. But love is one of those things that the more you give it away, the more you have to give. 

So, let’s lead with love. If we use love as our guiding force, we will find the people and places that need our love the most. Let’s find them and let’s give all the love we can. We can meet people’s needs to matter and be seen by taking our focus off of ourselves and turning it towards others. We can find ways to be loving all day every day. Let’s do that. Because in the end all that matters is how we love people. Let’s love freely and generously. Our actions can ensure that love wins. Love must always win. 

I’m An Orphan…Right?

~ Kai Raines ~ Leave a comment

Can you be an orphan at 63? Well, 63 and ¾’s to be accurate. Personally, I’m not sure but my sister says that we’re orphans now. My mother died March 17th. St. Patrick’s Day. My sister and I think she did that on purpose. Now no one will ever forget the day she died and it’s a national holiday for us Irish folks. What more could you ask for…green beer and toasts to you all night…toasts lengthening with each Guinness consumed. Omg! She would be so pleased. I’m happy for her about that. We did many toasts Sunday. My favorite was, “May heaven know you’re dead a full half hour before the devil finds out.” She wouldn’t like that one for herself, but my dad was probably laughing his ass off. Hopefully I didn’t create a conflict there…I wouldn’t want them to fight on her first day in heaven.

My mother died peacefully in her sleep Sunday morning. The rehab center called to tell me. It was a call I had been expecting at any time, but I was still surprised when it came. My mother wanted to die. She was ready. In her good weeks, she told me she had a great life but that she had lived longer than she wanted to. She missed my dad. She had stopped eating and drinking. She curled up in bed and went to sleep. She stayed asleep several days before she died. My dad passed away exactly the same way. I’m sure after 70 years it was hard to be apart. 

My first phone call was to my sister. I told her and then we just stared at each other silently for a minute or two on FaceTime, and then she said, “Well we’re orphans now.” I would have been surprised by that except she had been practicing this idea on me with “We’re gonna be orphans soon” or “We’re gonna be orphans when mom dies” and “We’ll be orphans. That’s what it’s called when both of your parents are dead.” That’s what it’s called alright…kind of.

An orphan is defined as, “A child under the age of 18.” This definition made my sister super sad, so I told her I’ll adopt her, and then she won’t be an orphan. I can be her “sister mother” kind of like “sister wife” only legal…at least I think it would be legal…super creepy but legal. And I won’t make her wear a long dress and braids…well maybe braids. I’m thinking Pippi Longstocking’ish. I need some red hair dye.

When I hear the word “orphan” I think of “Little Orphan Annie” the title of which became “Annie” probably because you don’t address a child as a “little orphan” or any kind of orphan. It’s not a title. The movie “Annie” reminds me of, “It’s a hard knock life for us” and “Tomorrow, tomorrow, I love you tomorrow….” And of course, Carol Burnett as Ms. Hannigan. She was some bitch.

For my sister’s sake, I also read that adults who have lost their parents can (and do) identify themselves as orphans. Merriam-Webster says, “A child whose parents have died, are unknown or have permanently abandoned them” are orphans. By that definition my mom was an orphan from a young age. Her father left my grandmother when my mom was 6, I believe. She told me that he was crazy about her and loved to take her places with him. She said that he loved her so much, but he still left, and she never saw him again. And she doesn’t know why. My mom was devastated by the loss of her dad. She had a double loss, her dad and being left with her mother, who she told us, never loved her. My grandmother’s brother, my Mom’s Uncle Mike, lived in the apartment with them. I’ve heard horror stories of how my grandma and great uncle would scare my mom and how they were mean to her. She was traumatized as a child. And I guess no one really cared. I know she felt abandoned and unloved.

It’s no surprise my mom had a lot of phobias…claustrophobia, acrophobia, and hydrophobia are the ones I remember. Not understanding why she was treated so harshly she came to believe that she was “bad” somehow and everything that happened was her fault. When children don’t understand what’s happening around them, they make up a story that solves the riddle for them. Our brains cannot manage the stress of not knowing or understanding what happened, so our brain creates a solution…even if the solution is hurtful to us…or untrue.

I was also an orphan, way before this St. Patrick’s Day. I was abandoned by my mother almost from birth. Not technically, not physically, but emotionally. My mom and I had a complicated relationship. I’m not sure exactly why.  I think many of our issues stemmed from her own childhood. They were hers but projected onto me, so what was hers became mine. Her mother favored her brother, 4 years younger than her, I believe. My mom used to say, as if she was joking, that her brother was “the sun, moon, and stars” to her mom and that “he could do no wrong.” She felt unloved and unwanted. I felt the same way. My mom and I had years that we were estranged from each other and that led to my estrangement from my dad, my sister, and all my extended family. I’m sorry for the lost years, at the time I was doing what I thought was best for me, and my own mental health. Would I do it differently now? I honestly don’t know.

I’ve used this blog to write about my mom and I will continue to write about her, probably a lot. I’m going to write about her because she was my mom. She was a very influential person in my life. The ways she loved and hated, was pleased or disappointed, what she accepted and what was just tolerated shaped who she was and who I am. Now with awareness, I want to choose my shape…I will shape who I will become…or am becoming. We are always becoming.

My mom had mental health issues. My primary caretaker had mental health issues. Issues that were never fully addressed and definitely not talked about. It was perhaps the biggest elephant in the room growing up…and there was a small herd. I’m going to free the poor elephant, actually, all the elephants. They’ve been chained up for too fucking long. I’m going to write about, and talk about, the issues in my family, with my mom, my dad, my parents (because they were different together than individually), maybe my sister, extended family…I’m gonna talk about patterns and habitual behaviors, familial and personal. I’m going to talk about the legacy of abuse, mental illness (in different forms), abandonment, grudges, withholding, and I’m going to talk about forgiveness, mental health, insight and change…I hope lots of change, for myself. I’ll leave other people to determine their own path through whatever life brings to them. Life brings a lot…a hell of a lot. 

If you’re reading this and you loved my mom, you might be offended when I talk about her…so this blog may not be for you. Remember though, I loved her too. I loved her and she was my model for motherhood and womanhood. I was sculpted out of my responses and reactions to her. In order to understand me I need to understand her. I need to develop my compassion for her. She was just a woman doing the best she could. It didn’t always feel that way. I’m sure it doesn’t always seem like I’m doing my best either. I’m gonna do my best with this. I’m gonna do my best for my wife, kids, and family. I’m gonna do my best for her and for me…so I keep moving forward.

Let’s be real…losing a parent is hard. Losing both in less than a year feels like a lot. That’s my official assessment of myself…it’s a lot. Sorting through baggage, that we’ve carried for years is hard work. The starting point is to put it down. Set the baggage down. It may feel like you can’t because it’s such a part of you and after all it’s part of a matched set. Do it anyway. Set it down and look around it. Finding a new perspective can get you started on a new path, and intentional path…a path for you and your health, both emotional and physical. I am choosing an intentional path. I am choosing my path. No one is making me do anything. I’m taking the path that leads me through all the shit I’ve been avoiding for such a long time. No more serpentining…constantly running in a zigzag line because I’m afraid of what will happen if I stop. What happens if I stop? If I stop and set down the baggage…I guess it’s time to find out.

So I’m headed on to a path of transformation. My transformation. I am way the fuck too old to be blaming my mom for anything. It’s time I take charge of my own life. My own life and my own behavior. In order to love someone, you have to know them. And to know them you have to listen, deeply. Its time for me to know, listen to, and understand myself. To give myself the same consideration I’d give a friend. And of course, it all starts with love. Love is the greatest gift we can give someone, including ourselves. I’m going to lead with love, in the world and with myself. I’m gonna try some tenderness. In the end, all that matters is how we love people, and that includes ourselves. I want love to win in my life, and in yours. Let’s be love warriors…starting now. I’ll go first….

Thoughts on PTSD

~ Kai Raines ~ 1 Comment

I think most people are familiar with the term PTSD. Post Traumatic Stress Disorder. We’re familiar with the words but maybe not the meaning or a full understanding of what’s involved with that diagnosis. I have diagnosed myself, (because it saves time) with PTSD as a result of the traumatic fall I had November 10th.

According to the National Institute of Mental Health, PTSD requires exposure to an event that involved the actual, or threat of death, violence, or serious injury. The disorder develops in some people who experience a shocking, scary, or dangerous event. Either you experienced the traumatic event, you witnessed it, someone close to you experienced the event, or you are repeatedly exposed to graphic details of traumatic events, for example, first responders. The National Center for PTSD estimates that out of 100 people, 6 will experience PTSD at some point.

As I was reading this week, I was reminded that my PTSD started before last November. When I was in my 30’s I started working for the Denver Department of Human Services as a child protection caseworker. I had a caseload of families with children who had been removed from their homes because of child abuse and/or neglect. One winter morning I had gone to a school staffing at 7:00 am about 45 minutes from where I worked. When I left the school, it was snowing…more like sleeting. I was driving very slowly because the highway was icy. All of a sudden, I saw a pickup truck lose control on the other side of the highway. The truck spun into the grass median and then flipped over and over toward me. I thought I was going to die. I thought the truck would end up on top of my car…and me. I tried to stop but my car slid on the ice. I hit the pickup truck when it stopped flipping and the car behind me hit me. As the truck was landing the driver was ejected from the front seat and went sliding down the highway. He looked like he was just sleeping as he slid by. I tried to steer away from him but couldn’t because of the ice. I thought I ran him over. 

When everything stopped moving, I was really shaken up. I understand now why an “excited utterance” is an exception to the hearsay rule in court. There’s no time or ability to lie about anything. I understand this because pretty much as soon as a state patrol officer said “hi” I blurted out everything that had happened, including thinking that I ran the driver over as he slid down the highway. The officer told me I did not run him over. The “him” was a 17-year-old, who stole his grandfather’s truck. He didn’t even have a drivers license. It was so sad because he died at the scene. The officer was gentle with me and told me several times that that young man’s death was not my fault. I think because the truck was flipping down the highway at me, I knew it wasn’t my fault. 

That accident gave me PTSD and I still have it. I cannot drive in the snow or ice…well, I physically can but emotionally it’s a bad idea. I am terrified of snowy or icy roads. And you may think, “well I don’t like them either, no one does.” True…but I’m afraid I’m going to be killed at any moment. I’m terrified that a car is going to flip over and smush me…and I’ll be dead. I literally cannot be in a car, riding or driving, in those conditions. That was almost 30 years ago, and I remember it like it was yesterday. I still feel the fear of dying and I still see that young man sliding down the highway. None of those images have faded in all these years.

It is natural to feel afraid during and after a traumatic event. A diagnosis of PTSD requires symptoms that last longer than a month and that significantly interfere with aspects of daily living, like work, or relationships. Symptoms must be unrelated to medication, substance abuse, or other illness. PTSD also requires: at least 1 re-experiencing symptom, such as flashbacks, distressing thoughts, recurring memories or dreams; at least 1 avoidance symptom, like avoiding thoughts or feelings, staying away from certain people, places, or events; at least 2 arousal and reactivity symptoms, such as hyper-vigilance, being easily startled or frightened, difficulty with sleep and concentration, feeling irritable or angry, self-destructive behavior; and at least 2 cognition or mood symptoms for example, difficulty remembering key parts of the traumatic event, ongoing feelings of fear, anger, shame, or guilt, loss of interest in activities you used to enjoy, feeling isolated, difficulty feeling positive emotions, and ongoing negative emotions.

There are so many reasons for PTSD personally, as communities, as a country, as a world…9/11, school shootings, as well as shootings in churches, synagogues, movie theaters, and LGBTQ+ nightclubs. There are murders, car accidents, bad falls, assaults, and fucking Covid. And I’m just stopping there but the list of trauma inducing events goes on and on…wildfires, tornadoes, hurricanes, floods…you see my point. I wonder if there’s anyone out there who doesn’t have PTSD. After 9/11 I walked around watching the sky and waiting for the next plane to crash and the next building to fall. After Pulse Nightclub I felt, and still feel, hunted, as a member of the LGBTQ+ community. After the Columbine shooting, I questioned the wisdom of sending my kids to school. The pandemic made me want to put everyone I care about into plastic bubbles so they couldn’t get Covid…and couldn’t die.

I think we are a nation of collective PTSD, but we don’t know it. We don’t know because, instead of feeling all the pain and loss of those events, we shut down or we just get angry. It might be righteous anger but it’s still just one feeling, one reaction. It’s easier to feel anger than to feel afraid or confused, or loss, or sadness. There’s been tremendous loss and we should all feel sad, we should be heartbroken, but instead we just get angrier. We are a nation full of angry people…angry traumatized people. When we attempt to solve problems while we are angry our solutions can easily turn to violence…guns, tanks, bombs. We hurt and so we want them to hurt too…whoever “them” may be. They did this to us, so we’ll do this to them…upping the ante with every reaction. 

And we are just reacting. When we’re traumatized, when we’re scared, when we feel threatened, our reaction is fight or flight. I am either gonna beat the shit out of you or I am gonna run the fuck away and hide. Those are the physical reactions our bodies automatically produce. We have a physical reaction but what is our response? Are we able to stop a moment, take a breath, and make a decision of how we will respond? Make a conscious choice. When a traumatic event occurs, our reactions are immediate, and they need to be so that we protect ourselves. When recurring fears and feelings are stirred up because of PTSD we need to find a way to respond. We need to be able to choose an appropriate response when we aren’t in danger, but we’re triggered. When I was walking my dog and I tripped, I was not in danger. Nothing happened to me. I was safe. But for example, if my reaction was to decide to never leave my house again, that might be a bit extreme. When triggered my reactions are not to actual danger but rather a perceived danger. I see danger everywhere because the world hurt me. The beach broke me, a car flipped in front of me, a dead body slid past me on the road…I was minding my own business, and the world got me. How did it get me? It reminded me that I am not in control. I’m not in control of the world or of people or even myself sometimes. Shit happens because I can’t stop it. I can’t stop it because I can’t control it…”it” being literally everything. Well fuck. People fall, cars crash, people die…life happens. Sometimes life feels a bit relentless. 

So, let’s be real…I have physically been put back together from the fall but mentally and emotionally, I feel guarded…maybe tentative is a better word. I feel tentative in my interactions with the world around me. So, what is a lover of the beach to do, especially since I’m scared now. I’m not exactly sure but I know one thing, sitting and being still with myself can only help. Sitting as in meditation or prayer or whatever reason causes you to sit alone and in silence. So, I’m gonna sit. Then, I’ll sit…and finally, I’ll sit some more. Because in a world that feels out of control, I can control that. I can control sitting myself down and meditating…or just closing my eyes and being still. Quiet, still, and by myself. 

So that’s my plan. To sit. Yep, that’s the whole plan. Call it meditation, call it relaxing, or call it laziness.  It doesn’t matter what you call it, it matters that you do it. So, I’ll sit 20 minutes a day…maybe only 10 to start. I’m not sure what to do with all these feelings. So, I’m gonna sit. I’m going to allow my much-feared feelings to arise as they want to and I’m going to sit with them. I’m going to stay with them. I am not going to interact with them, at least not now. I’m going to notice them in my mind, recognize them, notice them in my body, and then let them go. I’m going to notice, touch, and let go. And they will go…if I let go. I’m going to allow these feelings to come to me instead of trying to orchestrate how I’ll fix them without feeling them. Nothing needs to be fixed. All I need is to be aware.

Before I end here, I want to say that I am not writing this as a mental health expert or an expert in PTSD. I am writing as a fellow traveler on this journey with trauma. I’m reading and learning and sharing. This is not intended to take the place of any therapy. Only you know if you need therapy. If you think you might then you should. Therapy can be very helpful. 

If you are going to hurt yourself, call 911. If you have suicidal thoughts, get help right away. Reach out to a friend, a spiritual advisor, or someone you trust. Make an appointment with your doctor or therapist. You can contact the Suicide Crisis Lifeline 24 hours a day. Text 988 with any message you want and have a conversation with a counselor through text or chat. You can also call 1-800-suicide 24 hours a day, 7 days a week. Please reach out and get the help you need.

As a person who has experienced trauma, in relationships with people who have experienced trauma, in a nation that has experienced trauma, and as part of a massively traumatized world, be kind. Be kind to yourself. Be kind to other people. Lead with love in all your interactions. Because we need love to win. We need love to win everywhere. In the end, all that matters is how we love people. So, lead with love. Love is always the place to begin.

Floating and Falling

~ Kai Raines ~ Leave a comment

The Grammy Awards were last Sunday. I love Billie Eilish and that night she won “Song of the Year” for, “What Was I Made For?” If you haven’t heard it, you should change that…now. It’s an amazing song…in my opinion. She wrote it for the movie “Barbie” which I have not seen yet. Anyway, the beginning of the song says, “I used to float, now I just fall down. I used to know, but I’m not sure now….” As I’ve gotten older there are so many more things, I’m not sure of. Everything was so clear when I was in my 20’s…so simple…so black and white…so rigid.

When I was younger, I was an athlete. I played basketball, softball, and I swam…all competitively. I was coordinated. I could stumble and catch myself easily before I’d ever fall. I could run forward and backward…I thank basketball for that. When I went to college, the basketball coach was interested in me for the team. It was a very small school but still that was a dream come true. I ended up having knee surgery instead of trying out for the team (thank you field hockey…I should have never trusted a sport that makes you wear a skirt) and that was a big loss for me. Being an athlete was a huge part of my identity then. I think it was my identify. Everything in my life was connected to sports, all my friends played, and we spent our time together on and off the court. I had a basketball with me all the time and got really good at spinning it on my finger…I could even switch fingers and hands (my grandkids used to think that was very cool when they were little).

I wrote about my accidental fall, surgery, and ongoing recovery a couple weeks ago. I wasn’t really planning on writing anymore about it because it was done. Right? Then I was walking my dog and I tripped on my crutch and that whole accident came crashing down on me. I was back on the beach as if it was happening again right then. I saw myself fall. I heard and felt the crunch and snap of my arm breaking. My heart started racing and I felt the warmth of tears welling up in my eyes. I felt overwhelming fear and sadness, even though I was fine in that moment. I did not fall. I did not even come close to falling. I just tripped. I was so afraid.

I used to float…I’m not sure I ever floated but I didn’t fall. I wasn’t clumsy. I was coordinated. Now I just fall down, randomly and for no reason or that’s how it feels to me. And worst of all, I don’t know how to stop it. Missteps that I could have easily corrected in the past, knock me to the ground now. And I am afraid. Afraid to live in my body. Afraid to feel in my body. Afraid to fall in my body. How can I mentally feel like I’m 40 and physically move like I’m 90? That’s fucked up. I feel like everyone treats me like I’m fragile and about to break. But I’m not…okay I did break but I’ve been put back together with metal and cadaver bones. Just missing duct tape.

“I don’t know how to feel but I wanna try.” Feelings are hard for me. As a child, I was encouraged not to have them. Feelings are messy. No one wanted to know how I felt. How do I know this? No one ever asked. No one cared how I felt. If I was angry, I got in trouble, even though anger seemed like the go to emotion for my parents. And if I was sad or cried, I was teased or taunted. I felt humiliated. I decided emotions were way too much trouble for me.

Let me be real… I don’t know how to feel because I’m having difficulty being in my body right now. I was learning to be present in my body and feel my feelings and then I fell…my catastrophic fall. I feel fragile and I am not a fragile person…so that pisses me off…which I’m sure is helpful. I am not fragile. I’m fucking Superwoman. I deal with, manage, and take care of tons of shit every day. I am not fragile. Fragile feels bad to me, weak. I am not weak. I can’t be weak.

I don’t know how to feel…that’s true two ways. The “I don’t know” as in I don’t recognize the feeling, and/or the “I don’t know” as in I can’t decide, too many choices. I’m with number 2. I can identify feelings, I’m better at it with other people’s feelings but I can get to mine…it may take a minute. I have a master’s degree in counseling…I know lots of feelings…a grade 18th’s worth. But it’s not so much that I don’t know how to feel as I don’t how I can manage all these feelings. I have a fucking tsunami of feelings.

You see, it turns out I have all the feelings. So many feelings. I have spent years learning to feel my feelings…years. And convincing myself to stay present in my body, even when my body hurts. To stay with the physical pain and any feelings that arise from it. I feel afraid of all the feelings inside me. Afraid of being devoured by them. I’m afraid and sad. I feel diminished by falling. I became a fragile and weak person in other people’s eyes, and they question my capabilities…and their doubts eat away at me…and so do mine.

Now let’s be real…I might have some PTSD, just a tiny bit. I’m afraid. I’m afraid of being me and living in this body. I feel fragile and vulnerable in a predatory way…like my body is out to get me. I don’t know how to be in my body right now, it feels complicated. I’m afraid of my body, as if it’s separate from me, and can damage me on its own. I feel breakable in a new way since I fell. And it’s not so helpful that my mom tells me I need to stop falling because I’ll end up in “bad shape,” basically dead is what she means. If it was as simple as deciding not to fall, then it would never happen again. It’s not that simple. I’m careful and I fell. I’m careful and I’m afraid. 

It feels strange to say that I am scared of myself. Makes me feel a little bit like I have multiple personalities and I’m afraid of one of them…the one making me fall. I don’t know exactly what to do. I can pretend that there was no impact on me from the fall but the the slightest misstep or stumble and my insides collapse. Physically being put back together didn’t fix my fears. My bones have healed but not my heart.

 Let’s be real…I can’t outrun my feelings. I actually can’t outrun anyone, except maybe my English Bulldog. And neither of us believe in running. What’s the worst thing that can happen if I stay with my feelings? Allow myself to sit with my fear and sadness? I suppose I’ll feel way more than I want to but what else? What’s the worse thing that can happen if I feel…feel it all? And what’s the best thing that could happen if I allow myself to feel that whole tsunami of feelings? They are messy and I am messy, but would I learn to believe? Believe in myself. Believe in my ability to handle anything that comes up for me. Believe I can feel a tsunami and survive. Believe I am bigger and stronger and smarter than my fear. Believe in myself and my potential just like I promised myself I would. Perhaps practice what I preached just a month ago…there’s a whole lot of believing that’s ready to go on here…and all I have to do is stay, relax, and feel. So simple and so scary. Until you do it…until I do it.

Post traumatic stress disorder is a big topic so next week I’ll talk more about PTSD and the fear and sadness that can accompany it. In the meantime, I’m gonna practice what I preach and I’m going to love. I’m going to love myself and the people around me. I’m going to practice a loving attitude toward the world. Love will keep me a glass half full kind of person. It’s all in my perspective…so I’m keeping mine focused on love, because in the end all that matters is how we love people…including ourselves.

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!

Does Absence Really Make the Heart Grow Fonder?

~ Kai Raines ~ Leave a comment

“Absence makes the heart grow fonder” is a well-known saying. We say it when we’re going to be away from someone, and it feels difficult. It’s going to be hard to be apart. It’s going to be scary. We say it to comfort ourselves and convince ourselves that everything will be fine. This past year, my wife has had to live between Colorado and Florida because she still has a job in Colorado. So, half of the year she was there and half of the year she was here in Florida with me. During that time, I thought a lot about absence and whether it makes the heart grow fonder. I’ve decided absence on its own doesn’t really do anything, except maybe, make us forget.

Just being absent doesn’t automatically expand our heart or deepen our connection. While my wife was gone, six to eight weeks at a time, I did things to remind her what she means to me. We FaceTimed every day, at least once, and sent texts throughout the day. I sent her cards, flowers, cinnamon bears, words of love songs, and I wrote her a love poem. I wanted her to know she was always on my mind. It occurs to me that what I did was make myself present…instead of absent. My heart grew fonder but not because of absence. My heart grew fonder because of effort and intention. I intended to remain as present as possible in her life while she was away. I made the effort to make that happen. So maybe, absence met with intention and effort makes the heart grow fonder.

On its own, I think absence, rather than making the heart grow fonder, makes us forget. Someone who has hurt you is no longer in your life, a difficult situation has ended, an abusive situation you’ve been removed from for years – years without contact with certain people or situations and we think we’re healed…the wounded part of us is all better. But is it? Not confronting something doesn’t make it healed. It makes it repressed or buried, possibly festering from lack of attention. Sometimes the absence of something doesn’t make the heart grow fonder, even though we think it does.

I have had a challenging relationship with my parents, mostly my mom, throughout my life – I sometimes think just the sight of me or the mention of my name pisses her off. It’s scary, at least to me. There was a period of time that I didn’t have contact with my family…about twelve years. I missed them. I thought of them often, especially on special occasions. I spent holidays with my own family – my wife, all of our children and grandchildren. Some holidays we went to Texas to celebrate with my wife’s extended family. And I missed mine.

After twelve years, I saw a picture of my parents on Facebook. I was startled by how much they had changed. They looked so much older and more fragile than I remembered them. I started thinking about their eventual passing. I didn’t want to have regrets about our relationship. Regrets that I hadn’t seen them at least one more time. So, I wrote a letter to my parents. I told them that Gayle and I had taken two of our grandkids to see The Harlem Globetrotters for a birthday gift and they loved it. I remembered them taking me to see them and I was thrilled…Meadowlark Lemon and Curly Neal. It was the best. I thanked them for that memory. I thanked them for taking me to see The Carpenters and John Denver. As an adult I realize that may not have been their first choice of things to do, but they did it anyway. I told them I appreciated that. That letter was the catalyst for reconnecting. 

I sent the letter when I felt like I didn’t need or expect any response. I didn’t want my letter to have an agenda. I also knew if I had expectations, I could end up hurt. My mom called me a week or so after receiving my letter. We had a nice conversation and I caught her up on my kids and grandkids. A couple months later, I drove with my daughter and her two kids to see my parents. We were in town for a few days and while we were there, we stayed in a hotel so everyone would have space for quiet and relaxation. It had been twelve years after all. Our visit went great. We talked and laughed and spent time looking at old photo albums. Remember when those were a thing? We left on great terms, and I continued contact with my parents through daily FaceTime calls.

Things with my parents were great, so great in fact that we invited them to move to Florida with us so they could be with family. We have wonderful extended family in St. Louis, and they have their own parents and families to care for. We wanted my parents with us so that we could take care of them. My hope was that they would never need a nursing home because we would have them with us, in our home. It was so perfect…in my head. My mom really wanted to be with us in Florida and convinced my dad, who acquiesced. My sister lives in New York and I had been in Colorado and my parents needed more contact than either of us could manage long distance. So, look out Florida here we come…turns out, right back where we started from.

We had so much fun when we first got here. We tried new restaurants and took drives along the Gulf. We laughed all the time. Then the honeymoon ended. Fuck. My mom was depressed and mean. We moved May first and by Mother’s Day I was sure I had asked someone who hates me to move in with me. She was verbally abusive to my dad and me. She said hateful things to both of us. I felt like she had stored up every negative thought she ever had about me, and once we were in Florida, felt like she needed to vomit all of it at me…usually while yelling it at me. I found out things she thought about me that really crushed me. I wish I could un-hear them but no such luck.

We forget. So, is this the forgive and forget type of forgiveness? I don’t think so. This is the I want the ideal in my head so much that I choose not to remember the past. I ignore what I know to be true. I ignore my perceptions and people’s warnings. This is the choice to ignore what’s real until reality smacks you with a two by four and knocks you flat on your ass…my ass. It didn’t feel like a choice. It felt real. I wanted it to be real. I wanted to belong to my parents, especially my mom. I wanted her to want me…to love me…to like me…me the person. But that’s not real. It’s not the experience of my life, especially here in Florida.

I came to realize that what I missed was the idea of my family, my mom. The mom who’s there after school with homemade cookies and milk. The mom who wants to hear all about your day. The mom who loves you as a daughter but also really likes you as a person. The mom who is proud of you just because of who you are, not because you went to law school. I had built up an ideal family in my mind and that’s what I was looking for. That’s what I thought I had gotten after a twelve-year separation. I thought I had achieved the “just moving forward” with my mom. 

Let me be real…it’s time for more therapy. I have personally assisted in the successful career of several therapists in my life. Doesn’t seem like therapy could hurt me. I’m already hurt. It’s time for me to separate myself from my mom, not physically, but emotionally. Everything she says hurts me and so I feel raw most of the time. I have to find a way to keep her messages out of me. Just because she says it doesn’t make it true. How long before I know that at my core?

I was so seduced by how well things went before we moved that I doubted myself and my memory of life with my parents. I wanted the seduction to be the truth, even though I should have known it wasn’t. I wanted to be able to just move forward. I forgot that my mom lives in the past. I forgot that she’s moody and depressed and won’t acknowledge it, let alone talk about it. I also let myself forget how volatile my parent’s relationship was…the fighting, screaming, throwing and breaking things, and name calling. My mom remembers every grievance she ever had against my dad. We lived in her reality of two or three stories that were supposed to show me that my dad was an ass. These incidences were from fifty years ago.

And here’s some reality, I didn’t really forget. I was in denial. Fuck. I didn’t want my memories and experiences to be real. I wanted to be wrong. It was easier to just blame myself. And so, I did. I blamed myself for every problem in my home. I rearranged the past to make it more comfortable for myself. It was so much easier for everything to me my fault. Simpler if I was the problem. If I was the problem before, and now I wasn’t, then everything would be good, right? Not so much. Just because it’s easier doesn’t make it true. I was thinking all sunshine and rainbows and instead got a hurricane of reality. The good news is the hurricane woke me up. The bad news is that I ignored everything I knew from my childhood and put myself right back in the center of the storm.

Absence didn’t make my heart grow fonder. It made my heart forget. I forgot. I tried to undo the past in my mind by blaming myself for all the problems. I allowed myself to be naïve about my parents, especially my mom. I wanted things to be good between us so fucking bad that I became blind and a bit deaf. I saw things as either/or instead of both/and. My mother can be kind and she can be mean. I can love my mom and still see who she is. Conflicting things can exist at the same time. It’s called cognitive dissonance. It’s holding two conflicting thoughts in your mind at the same time. Personally, I call it a mind fuck, but I’ll go with the official term. 

My thoughts about my mom are almost always conflicting. I remind myself that no one is one thing. No one is bad or good. We are all both. We are all shades of gray, and we change all the time. My history is to discount information that I don’t like and cling to what do. It’s time for me to do some rethinking and unlearning. I need to unlearn what I grew up believing was acceptable and rethink responsibility. I am not responsible for what went on in my house. My parents were the parents. And regardless of what someone else believes about me, it’s what I believe that matters. I decide who I am. I decide who I become.

Absence, on its own, is neutral. What we tell ourselves about absence is the story we create and the story we live. Instead of absence, I focus on presence. I need to remain present in my own life and in the lives of the people around me. I can be present even when I am physically absent. I can remain present in moments of cognitive dissonance. I can manage conflicting ideas and thoughts. And I can love imperfection…in others and myself. I can love humanness. I can love boundaries that allow me to be loving and safe. 

I live a life of intention and effort. I am thoughtful in my words and actions. I choose presence. I choose honesty and vulnerability. I choose moving forward. I choose love. In the end all that matters is how we love people…so I choose to love well.

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.

A Letter to My Dad

~ Kai Raines ~ 1 Comment

Eulogy…that’s such a funny sounding word. Merriam-Webster says it comes from the Greek and means literally “good speech” and it is a “speech or piece of writing that praises someone highly, typically someone who has just died.” So that would be my dad. My dad died Friday, August 4th at 10:25 pm. It’s interesting that 10/25 was also his birthday. I’m not sure it means anything but it’s interesting.

My dad died. He died. I keep using that word, died, because the words we usually use, “passed away,” “gone,” “lost,” seem to understate what happened. Although I have to say, I used “gone” when I told my mom. Dads gone. That’s all that needed to be said. We use those other words as a way to somehow soften the impact of death or serpentine around reality. Now I’m a serpentiner (I feel certain that’s a word) for sure. I try to be gentle with people when I’m sharing difficult information.

My sister, my wife, and I had a meeting with my dad’s hospice nurse a few weeks ago. After we finished talking the nurse suggested that we tell my dad what we had been talking about, even though we were right next to his bed. He’d always close his eyes when we were talking as if that made him invisible. So, I started telling him that we were talking about how we needed more help caring for him and that things were progressing so nurses would be coming every day and…I don’t know what else. I was stumbling around. I stopped talking and my dad’s nurse looked at him and said, “You’re coming to the end of your life. It won’t be much longer now.” Or there’s that. Sometimes direct is better…shorter for sure. There is no good way to tell someone they’re about to die. It was hard to discuss my dad’s death with him. I felt like I would offend him by thinking he was going to die. As if dying was a sign of weakness.

I feel as though I am still in shock, or maybe denial, and that my dad’s death hasn’t really sunk in for me yet. That seems weird since I was with him when he died…can’t be much more real than that. Now my dad wanted no funeral or memorial service. He wanted to be cremated and then he said he didn’t care what we did with the ashes, we could just throw them away. I told him that I would follow his wishes but that I was going to spread his ashes in the ocean. I would never just throw his ashes away. I could make some inappropriate jokes now, and my dad would laugh his ass off, but I won’t.

So then does he need a eulogy? No service so no need for a speech, right? I don’t know. Writing always helps me and my eulogy to my dad could help me face life without him now…at least that’s what I think.

Now in a eulogy, the giver of the eulogy, usually talks about the person who died, but instead of talking about my dad, I’d rather talk to him. So, instead of a eulogy, I’m writing my last letter to my dad.

Dad,

I can’t believe you’re gone. The apartment seems empty without you. I still expect to sit in the family room with you and watch old movies. I kept a list of the movies we watched and ones I still wanted to watch with you. When I’m in bed, I swear I still hear you breathing in the next room. When I wake up during the night, I have to stop myself from going to check on you. For the last couple weeks, I was always checking to see if you were breathing. I knew at some point you wouldn’t be but I’m still not sure I was ready. Maybe I was as ready as I could be. Thinking about death is a lot different than experiencing it.

You were the person I went to when I needed help. You seemed to handle any news in stride. Remember when I hurt my knee and needed surgery? I called you from college to tell you. Now I told you and I expected you to tell mom. That’s how this was supposed to work. I wanted you to tell her because she did not take news as calmly as you. My system failed because although I expected you to tell mom…sometimes you did and sometimes not so much. This time fell under the “not so much” category and boy did the shit hit the fan then…holy hell. I’m smiling at the memory now, but I sure wasn’t then.

It’s funny now to think that I went to you for help or with difficult information because I was always afraid of you growing up. In my memory you were usually pretty laid back and easy going but when you got mad watch out. You got MAD! Scary mad. Remember when you ripped a post out of the desk in our kitchen in Wisconsin? You were so tall and had such a big voice. It was intimidating. You were intimidating. As you were dying your voice became really soft and for the last week or so you couldn’t talk at all. It took too much energy, or maybe you had said everything you wanted to say. The last words I heard you say were “toast and coffee,” which you said every night when you went to bed. Only we can’t meet in the morning for toast and coffee anymore.

I think you wanted us to be afraid of you. The old school thinking of “if you’re afraid of me then you respect me.” Now pardon me but you know I have to tell you that’s total bullshit. I didn’t respect you when you scared me, I avoided you. I got mad at you, and I held on to that anger for a long time. It’s hard to share yourself or be vulnerable with someone you’re afraid of or angry at. You told Gayle, (my wife), that you had Kathy (my sister) and I bring you the brush or belt when you were going to spank us to “humiliate” us. She was pretty shocked by that, and I was too. It worked. I was humiliated and unfortunately that created an almost insurmountable distance between us. I say almost because I think we managed to bridge the gap, especially this past year in Florida.

You would never say you were sorry for anything. You’d say that stupid ass line from the movie “Love Story,” like it was ideal advice. “Love means you never have to say you’re sorry.” What kind of bullshit was that? I think there are a lot of things and relationships that would have been easier if you had never seen that movie. Even though you softened as you got older, I don’t remember you ever apologizing. A couple weeks before you died you wanted to watch “Brian’s Song” with Gayle an I. You said we could watch together and cry together. And we did.

As we’ve moved through this past year, mom’s dementia got worse. She has horrible mood swings. It was hard to listen to all her angry words and accusations. Sometimes I think she says stuff that she knows will hurt me, like something about our relationship. I think she was jealous of our relationship. She told me that you always called me the “bad seed.” I wish I had asked you if that was true, but I thought there’d be no good answer, so I didn’t. I guess I didn’t really want to know. That would be soul crushing if you did. Who wants their soul crushed? I don’t think we would have gotten along as well as we did if you thought that of me. 

I remember growing up that if mom was mad at you, she was automatically mad at me too, even if I had no idea what was going on. I think she assumed I’d take your side. Maybe that was true. I don’t really know. I think that’s part of the reason I’ve had a hard relationship with her. She was unpredictable and I was always trying to figure out what I did wrong. Usually, I couldn’t come up with anything and I believe that’s because I didn’t do anything. You know I’m still trying to figure her out. Even as an adult if she was mad at you, she was mad at me. Made for some tense times here in Florida. We were frequently in the doghouse on the island of “what the fuck did we do now?” It’s very stormy on that island…the weather changes very quickly.

I think your sense of humor was my favorite thing about you. I will always remember how much you loved to tell jokes. You told them all the time. I was going through your wallet the other day and found the notes you had made to remember all the jokes you wanted to tell. I even recognized a couple of them. You seemed the happiest when you were telling a joke and getting lots of laughs. And you made yourself laugh too. I loved listening to you and Amy (my daughter) tell jokes to each other. You two cracked each other up. There was nothing better than listening to the two of you laughing uncontrollably. It made me laugh too. I think that’s how you liked things, lighthearted and lots of laughter.

I think I get my sense of humor from you. I think Kathy does too. We’re funny people. Seriously…funny. I used to love to make you and mom laugh. Remember when I used to pretend I was a balloon? This all happened in your bedroom when you were trying to get Kathy and I to leave and go to bed. We were teenagers then. There was a comedian on tv, at the time, that did this act and I loved it. I’d put my thumb in my mouth to blow myself up. Then I’d float around the room gently bumping into things that changed my direction. The main thing was I couldn’t get out the door. When I tried, I just bounced off and floated around the room. I remember laughing really hard at that. That and Kathy and I singing “Sisters” from “White Christmas” or “Let’s Just Kiss and Say Goodbye” by The Manhattans. Sometimes it was easier to make you laugh than mom. She did not always appreciate how hysterical we are…or were. I think we’ll still be funny…or I’ll still be funny, in the future. Although I don’t know, you might be telling jokes right now wherever you are.

Mom always says that you didn’t know how to love because you were raised in a house without love. I’m not sure if that’s accurate or not. Your parents died right before I turned 8 so I have limited memories of them and their relationship. I think mom was raised in the same kind of environment. She says all the time that grandma hated her and only loved her brother. I don’t know if that’s true or not, but it’s certainly true to her. Maybe that’s why you found each other; you were trying to heal the same wounds. Although you can’t give someone what you don’t have, and I’m not sure how much either of you had to give.

You were never big on displays of affection. An “I love you dad” received the anticipated response of “back at ya.” It’s funny now. I’m not sure about growing up. I frequently felt like you were disappointed in me, not for anything specific, just me in general. That’s sad to me. I heard you talking to Michael (my nephew) on the phone one night this past year. You were talking about his new job and when you hung up you told him you loved him. I asked you why he got the “I love you” and not “back at ya.” You said because he earned it with the new job. That also makes me sad. I’m guessing you learned that from your parents, probably your dad. Maybe that’s why I felt you were disappointed because I was never earning the I love you. 

As you were getting closer to your death, I think you’d forget, and an “I love you too” would slip out in response to being told you were loved. It was like a game wondering what your response would be. When mom fell, shortly after we moved here, and I took her to urgent care because I was worried about the lump on her head, she ended up going to the hospital by ambulance. When I called to tell you, you told me you loved me. You said it like it was a prize on a game show. You told me I did good getting her medical help and you said, “So here, I love you.” I earned it.

Mom has told me that if you guys hadn’t moved to Florida you’d still be here. I don’t think that’s true. You told me if you hadn’t come to Florida one of you would have been dead. I don’t know. What I do know is that I’m glad you came to Florida with us. I really treasure this past year with you both. I’ve reached a point in my life where my focus has become not having any regrets..any regrets about my relationship with you or my relationship with mom. And I don’t have any, especially with you. I got to spend a year with you living in the same home. I really enjoyed living with you, as long as we stayed far, far away from politics. Right!? I got to take care of you. Hopefully you could feel my love for you in all of those moments. I was happy to take care of you. Happy to be here for you, because you have been here for me, especially this past year. I know you’ve tried to intervene with mom when she’s being mean to me. And you paid an emotional price for defending me. I appreciated it more than you know. And you would ask me if I was okay and try to make sure I wasn’t taking what she said personally, but that was hard. It felt, and still feels, very personal. You understood that. 

One day when mom was yelling at you, you said, “Do you ever wonder how I feel?” I think that may be the only time I ever heard you use the word “feel” especially in reference to yourself. It’s sad to me to think of that and how much emotional pain you were in. I asked you, respectfully, one day if you ever thought about leaving mom over all these years. And you said no, and I especially remember this part…when I asked you why not you said, “because she always comes back.” You saw something at the core of her that you loved regardless of how she was treating you in a specific moment. Some core that always reappeared. That you always loved. I guess you did know how to love. It’s hard to recognize if you haven’t had it.

I was thinking about you telling me how you had changed my diapers as a baby and now I was changing yours and how you felt that was wrong. I wish I would have said the first thing that popped into my head at the time which was, “You never changed my diaper. That’s some bullshit dad.” We would have gotten a good laugh out of that, especially because I would have used the word shit.

Now dad, let’s be real…you gave me many things that are invaluable to me…my sense of humor is one of the best. My love of school and learning, always expanding my mind. To be true to my word and do the things I say I’ll do. To live without regrets, although I think you and I each take a different path to get to that point. I’m stubborn. One day mom told me I was stubborn, and I said, “how could I not be? I was born to stubborn and stubborner.” It’s in my blood. I’m a glass half full person just like you. You seemed to find the positive in situations and that was your focus.

Now some of what you gave me may have been unintentional, such as, my ability to apologize, especially to my children. The fact that I feel compelled to apologize when I have hurt someone. And I say “I love you” pretty freely. I always want people to know how much I care about them. I would never try to humiliate anyone. I care about other people’s thoughts, feelings, and opinions, including children. Children have feelings and they need to be heard. I learned to push my feelings down and appease people, so that they feel okay…regardless of how I feel or felt. I guess you seemed sort of impenetrable when I was young. I’m not sure it occurred to me that you had feelings…except anger and laughter…laughter isn’t a feeling, so maybe happiness, I’m not sure.

One of my favorite quotes is, “We are what we think. All that we are arises with our thoughts. With our thoughts, we make the world.” Buddha said that. In my experience that’s really true. I think you’d agree. I think I took things more personally when I was young than I do now. I can see now that a lot of things people say or do are about them not me. Even if they say it’s my fault. Just because someone says something doesn’t make it true. Even if that someone is your parent. I cannot be responsible for everyone’s feelings. I have enough trouble with my own. Maybe you know that. 

Ultimately, I knew you loved me. I knew without the words, but the words were nice too. I loved spending the last year with you, and I know you know I love you. I hope mom knows too. There’s still time for me to work on that and I’m afraid it will take a lot of work. But I know that in the end, all that matters is how we love people. I miss you dad.

In the Event of My Death

~ Kai Raines ~ Leave a comment

We have lived in Florida now for about 15 months and 12 of those months my father has been on hospice. Last week my family met with my dad’s hospice nurse and his status was changed to “imminent” as in dying any day now. When did it get so close? Since that meeting I shut my world down. Now I sit with my dad and wait for death…wait for death to take my dad away from me…imminently.

It’s a weird thing to wait for someone to die. It’s uncomfortable and peaceful at the same time. I am a person with strong propensities and under stress they pop up…or pop out. I’ve been breaking out all my coping mechanisms. Comfort food and wine were first. And always I turn to reading. Books allow me to explore and question what’s happening around me and to open up to the present moment. One of the best things reading does for me is move me out of denial in a way that I am amenable to…sometimes I don’t even know what’s happening until I realize I am actually feeling my feelings.

“Bardo” is a Buddhist term for in-between time. After death and before rebirth. A transitional time…the gap or space between what ended and what is yet to come. My teacher, Dzogchen Ponlop Rinpoche, says, “This experience of the present moment is known as bardo in Tibetan Buddhism. Bardo in a literal sense means ‘interval’; it can also be translated as an ‘intermediate’ or ‘in-between’ state. Thus, we can say that whenever we are in between two moments, we are in a bardo state. The past moment has ceased; the future moment has not yet arisen. There is a gap, a sense of newness, of pure openness, before the appearance of the next thing, whether it is our next thought or our next lifetime” (Mind Beyond Death, p. 10). So, the essence of bardo is found in the experience of nowness, the gap between the end of one moment and the arising of the next one. 

Why is death so scary for us when we experience it all day every day? Something ends and something else begins, over and over again. The reality is that death and birth happen continuously. Every day is filled with small deaths. We are continually faced with endings…transitions between the end and the beginning. Our fear comes from our desire for things to be permanent and solid. We don’t like impermanence. We like sameness. We like the predictable, consistent, and comfortable. Our desire for comfort keeps us butting our heads into reality…get a helmet.

Pema Chodron, in her book How We Live Is How We Die, says, “What everyone can agree on, however, is that during our present lifetime, thing’s definitely keep going. And as they keep going, they continually change. Things are constantly coming to an end, and things are constantly coming into being.” Change never stops. The way to live with the fear of death is to embrace it. What we resist becomes stronger. I must open myself to the inevitability of death, and the fear that arises, and live in its presence.  Live with death in mind because how we live is how we die. Death doesn’t just happen at the end of our life; it happens in every moment. Impermanence. Reality will take place whether I like it or not. My dad is going to die. Everyone will die, including me. We can be open to everything whether we like it or not, because it’s going to happen, and then it’ll change. We are always in a bardo because impermanence never takes a break. There is never a moment that we are not in transition.

It’s strange knowing death is imminent. Of course, we’ll all die but we don’t usually know when that will happen. I think I prefer the mystery. As for him, I’m not sure what he knows. His whole life has been reduced to our family room. The family room is where everything happens for him…makes it an aptly named room. He gets a bath, nurses and aides come to check on him and up until a week ago he used to eat in this room. He isn’t eating or drinking anything now. He has to be changed every day and that has been the hardest thing for him, because sometimes that responsibility is mine. One day he told me that he used to change my diapers and now I change his, and he paused a minute and said, “That’s just not right.” But in a circle of life kind of way it is right…it’s exactly right. We need to take care of each other.

It’s a strange time when someone’s death is imminent…waiting for death…waiting for the transition. I wonder if he feels like he’s waiting? Or getting ready for a big change? He sleeps most of the time but sometimes while he’s sleeping his mouth will move like he’s having a conversation with someone but there is no sound to his words. I wonder if he’s talking to his mom and dad…getting ready to see them after 55 years. I don’t know who else he might be looking to see on the other side but he’s got something going on. 

At this point the only thing I can think to do is tell him that I wouldn’t have traded a single day of this past year being with him and my mom. There have been some challenges, but I wouldn’t change anything. I hope that helps him and eases his worries. He has told me more than once this past year that this is not what I signed up for, and I tell him it’s exactly what I signed up for. I hope he believes me.

Let’s be real…when we reach the time of our death, that’s not the time to try something new, something we always thought we’d try but never did, like meditation, or prayer, or who knows what. All we have at the end of our lives is what we had a second before the end. We aren’t suddenly a spiritual guru, if we have never cared about developing our own spirituality. We won’t suddenly be relaxed if we’re always anxious, or loving if we’re cruel. We won’t be able to be present in that moment if we routinely live in the past or the future. All we have is who we are, our habits of who we are and how we think. Our propensities. We’ve had a lifetime of building our propensities, the habits of our minds.

The only way to become comfortable with death is to develop our ability to remain in the present moment. Stay present with the little deaths that happen all day every day. Learn to live in the in-between state. Become comfortable with groundlessness, the uneasy footing of continual change. Facing these fears day after day is how we become comfortable with death, and with life. After all, living a life we aren’t present for isn’t really living at all. Let’s love ourselves enough to be present and love others enough to give them the gift of our presence. Never forget love. Love always wins.

“When the appearances of this life dissolve,

May I, with ease and great happiness,

Let go of all attachments to this life

As a son or daughter returning home.”

Dzigar Kongtrul Rinpoche