Tag: Death

The Words We Use

~ Kai Raines ~ Leave a comment

I’ve discovered that I have a pet peeve…well, let me be honest, I have several. Not wringing out the sponge and leaving it all cold and wet in the sink. Not cleaning the counters after you cook. And anything left sticky…I especially hate sticky. My mom left sticky little fingerprints everywhere. I guess because she was always eating Cheetos and Milk Duds. Her favorites. And who tells a 91-year-old that those aren’t healthy choices? Not me.

Anyway, I’ve noticed a new one…I hate when people refer to someone who has died as “losing” them or saying they “passed away.” I think we’re afraid to use the word “dead” because it seems harsher and more final. Death is pretty final. My daughter died January 2nd and I did not lose her. She’s not misplaced. I’m not suddenly going to find her somewhere unexpected…although I really wish I were.

I misplaced my son once, briefly. Really, he misplaced himself. Having more children than you have hands is not a great idea…one can always get away…and it was always him. He was three and we (myself and three young children) were at a clothing store. He slipped himself into a circular rack of clothes and disappeared. I was frantic for the two minutes before I found him…his sisters may have found him. They had a better handle on him than I did. Anyway, that’s losing someone. My daughter is not lost. She’s dead. Fuck.

Passing away sounds like she was a wisp of vapor that evaporated. Or a mirage all along and now the mirage has passed away. She didn’t dissolve or fade away like fog in the early mornings here in Florida. She died. She was very sick and she died. And that’s final. As much as I hate it, she isn’t coming back…I do believe in reincarnation, or at least that the energy that makes us who we are, our spirit or soul, continues to exist in some form so…someday who knows. I have to use the words died, dead, death because it’s the only way I can make what happened real. The only way I can bring myself to understand that she isn’t here anymore. She’s dead. That’s an awful word to use in reference to your child. It’s so fucking horrible. It rips my heart out…but it’s true.

I do have a point here besides the death of my daughter. I’ve written about chronic pain and specifically about problems with my elbow replacement. Over the last 10 years, it’s been revised several times because of loosening. Then it was removed once because of an infection, and again when I broke my arm and dislocated my elbow, which destroyed it. That was less than three years ago. For the past year I have known it was coming loose again. I can feel it. I’ve told the doctor repeatedly and he assured me that it was fine because the x-rays looked good. Even though I had a lot of swelling, grinding, and pain in my elbow.

A few weeks ago, the swelling in my arm ballooned. My left upper arm and elbow are twice as big as my right arm. It’s alarmingly swollen…enough that when I went to talk to my PCP, she was shocked. She raised concern that it might be infected…blah, blah, blah. The x-rays finally show what I have been feeling and the doctor sees it. The hardware is loose so, tomorrow I am having my elbow replacement removed. Because of this long history nothing is going in my arm to replace it. My arm will no longer have an elbow. So, my arm will no longer function. I am going to lose the use of my left arm. There’s no point trying again because they have all failed. In total I think it’s been 6. That’s enough. The doctor and I are both done.

In preparation I have been trying to do everything with only my right arm. Know what I’ve discovered? That’s fucking hard. Seems like everything takes two hands…although sometimes I can use my head as a substitute. Reminds me of when I found out I had celiac disease and discovered gluten was in everything. It’s not so much anymore, but in 1998 it was the staple du jour. I never realized how much I used my left arm…until now. I’ve started to lose the function in my left arm already…hence the use of my head…like when I’m trying to put towels on the shelf in the linen closet.

My wife, who always has the helpful suggestions, told me that I’ll be able to turn in a circle fast and slap people…because my arm is just going to hang loose by my side. I guess I’ll have to start slapping people. Seriously, this is all overwhelming. I’ve been finding adaptive devices to make having one arm easier and to allow me to do things independently…like drive, cut vegetables, dress myself, wash my right arm. Things I take for granted…or I did.

So, I’ve been thinking about saying that I’m “losing” my arm. My arm won’t be lost. It won’t be misplaced. It will still be attached to my body. My arm will be dead. My arm will die tomorrow. I feel like I’m awaiting an execution…for my arm. Although my arm is dying as I write this. The only way I get it to work now is by using my shoulder…and my head.

Rituals are important. They mark important events in our lives. We have funerals to mark the death of someone who mattered to us. I’ve thought about having a funeral for my arm…like they did for Buddy’s arm in Fried Green Tomatoes. His arm was cut off by a train, so they buried it with a headstone and a eulogy. After that the expectation was for him to get on with life and not feel sorry for himself. I don’t feel sorry for myself. Of course, I still have my arm. Is a funeral appropriate for a limb that’s still attached but has no function…I don’t know. Do I want a funeral for my arm…not sure. Will I refer to my arm as dead…don’t know that either.

I am learning to speak the truth to myself. To be honest in my observations and to call something what it is…not dance around it to avoid reality. I have also been thinking a lot about my belief, that I end my blogs with, that in the end all that matters is how we love people. Right now, I might be the person who needs my love the most. I think I’ll forget about the funeral for my arm for now and focus on some self love…lots of it. With a good dose of patience and gentleness. In the end it does matter how we love people, including ourselves. It will make a difference in how we make it to the end…whatever that may be.

Profits Over People…Swedish Medical Center Denver, This One’s For You

~ Kai Raines ~ Leave a comment

 My daughter died 108 days ago at HCA HealthOne Swedish Medical Center in Denver. She had been hospitalized for close to a month. The time we spent at the hospital was horrible. How could it not be? We were confronting the most traumatic loss my family had ever faced. My daughter was dying…at the age of forty. This loss was unbearable, and yet there was no choice but to bear it.

Aside from Jessica dying, there were other issues during her stay that were deeply distressing for myself and my family. First, the hospital lost her phone. That may seem insignificant, but when your daughter is at the end of her life and the hospital is cavalierly disregarding your loss, it’s infuriating. Staff assured us, more than once, they would replace the phone…because they lost it. They never did. My daughter, Amy, contacted the hospital administration and the board of directors about the situation to no end.

Now you may think that because my daughter died it doesn’t matter. But you’d be wrong. The phone was hers. Hers while she was alive and hers to decide who she wanted to have it after her death. It was Jessica’s property and when she died it became ours, along with all her other belongings. You know who it never belonged to? Swedish Medical Center. How dare they decide that they didn’t need to rectify their mistake…that they didn’t need to honor their promise and, my daughter, by replacing her phone. In the weeks before I went to Denver, to be with my family, I lost my ability to talk to my daughter because her phone was gone. She wouldn’t answer the hospital phone. And here’s the thing, she didn’t need to because she had a fucking phone. My family struggled to notify her friends after her death because we didn’t have her phone with the contact information.

Second, it was hard to get honest, straightforward information from the hospital doctor. My daughter, Amy, noticed on a medical form, handed to us during a room change, that her sister had cirrhosis of the liver. That is end stage liver failure…but no one told us. She had been in Swedish Medical Center four weeks earlier and there was no mention of cirrhosis to her or in her discharge paperwork. That’s a huge oversight…perhaps negligent.

Every day I asked the doctor if my daughter was going to recover. And all I got was a list of the problems caused by the liver failure, the additional tests she needed, and the new medications they were giving her. It wasn’t until I backed the doctor into a corner, figuratively, that she said…and I quote, “I don’t think she’ll die today.” My daughter died the next day.

Even after that response, the doctor wanted to put a tube down my daughter’s nose and throat to give her another medication. And because Jessica was uncomfortable and couldn’t lay still, they would need to restrain her. That was my breaking point. I burst into tears and told them absolutely not. They were not going to tie her to the fucking bed. I’m no doctor but it was clear she was dying. Why put her through that…what was the point?

I told the doctor I wanted my daughter to be comfortable and without pain. No more tests. No more trying to give her medication by mouth because she couldn’t swallow anything…which they should have known. Why did they not know that? Why did I have to tell them? And why did I have to demand pain medication at all? The doctor kept telling me that Jessica wasn’t in pain. I insisted on pain medication the previous day because she had been crying and in obvious pain. I told her that I knew if she was in pain…I’m her mom. She needed IV pain medicine.

After that conversation, the doctor offered us the option of hospice services. She said they could be at home or in the hospital, but her recommendation was in-hospital. We agreed. After the decision was made a hospice worker came, introduced herself and explained what was going to happen and how their services worked. The next morning, January 2nd, a hospital social worker came to my daughter’s room to talk to us…. Remember, my daughter is dying in the bed beside me…the social worker told us that Jessica’s death was “not imminent enough” and so they were discharging her. WTF! So, after finding out that imminent meant within three days, I asked where she was supposed to go? The social worker said she needed to go home with one of us or to a skilled nursing facility…and with that speech bubble still hanging in the air…she added that a facility would be expensive, Medicaid would not pay for it, and we could not afford it. Nice.

I was sobbing and my daughter, Amy, was trying to talk to them. I’m gonna shorten this story for you…we insisted they get the doctor because the social worker said the doctor made the determination that my daughter’s death was not imminent enough. When the doctor came in, I reminded her that she told me the day before that she didn’t think Jessica would die that day…but clearly, she was dying. In what world does that not indicate an imminent death. I spent the previous night at the hospital because I wasn’t sure she’d make it until the morning. I did not want her to be alone. All anyone had to do was look at my daughter to see her death would be very soon. We argued with the doctor until she agreed that Jessica’s death was imminent and she stayed at the hospital. It didn’t seem to matter that we had nowhere we could have taken her. My daughter died that night, January 2nd. About eleven hours after they wanted to discharge her.

The issue for me is that the hospital took the most horrific time in our lives and made it so much worse. I was barely holding on as it was but then I had to convince the doctor my daughter was going to die right away. I had to argue for my daughter’s death…to persuade the doctor that my daughter would die at any moment…what mom should have to do that. No one should ever be in that position. Ever. And now I am reliving those moments, conversation by conversation, in an attempt to elicit integrity and compassion from this hospital.

The hospital’s response to all of this was to blame hospice. To say that they have no control over a hospice agency’s decision to accept a patient for in-hospital care…basically they threw them under the bus. Although factually true, it is not relevant here. Hospice accepted my daughter for in-hospital services at once and without question. Aside from the nurses, who were compassionate and kind, the only positive experience we had at Swedish was working with hospice…and they are an independent agency. Not part of Swedish at all. They still contact me regularly to see if I need anything. I have heard nothing from Swedish Medical Center. No condolences. No acknowledgment. Nothing.

If you are reading this and you live in the Denver metro area, please share this post with everyone you know. At the end of my blogs, I always say that in the end all that matters is how we love people. I love my daughter so much…and I love my family. Sometimes loving means not letting something go. Continuing to fight for someone who can’t fight for herself. I will not allow my daughter to be disregarded or treated as though she was insignificant. Her life had meaning…she was an important person. She was so important to us, and she should be important to Swedish Medical Center. After all they are in the business of caring for people…or so they say.

Swedish administrators, it is time to get your shit together and do a better job. Do more. Care more. Be better. From my perspective you can only go up from here. Start by replacing my daughter’s phone. Then learn how to deal appropriately with families who are facing the imminent death of a child…or a sister…an aunt…a niece…a parent. Forget your profits for a moment and consider what is best for the patient…for the family…how you can help make an unbearable situation more bearable. That’s your fucking job. Do better so no one else has to go through what we did. Losing my daughter was the most horrific experience of my life. I did not need you to make it worse…and you did…infinitely worse. You should be ashamed. People come to you for help. Be helpful. Have integrity. Be better.

.

A Final Resting Place

~ Kai Raines ~ Leave a comment

My kids used to tell me that when I died, they were going to divide my ashes and keep them on their mantles…forever…like in the movie “Meet the Parents” where the Fockers kept grandma’s ashes for years adorning their fireplace…until the cat used them as a litter box anyway. And I told them, no. It’s possible I threatened to haunt them if they did. I didn’t want them to hang on to my ashes…or to me. They needed to spread my ashes in the ocean and be done with it. Let go of them and me, I guess. I was adamant. Then my daughter died.

It’s a horrible day when you go and retrieve your daughter’s ashes. Not a day I’d wish on anyone. I picked them up at A Better Place. I selected their cremation services because of the name…because I wanted to believe it was true. It is equally horrible to arrange your daughter’s cremation. They put her remains in a black box, not the urn we bought. I was flying home with her ashes and needed to be able to pass through airport security. Only specific urns are TSA approved. I did some research and even though it should have been safe I was not taking any chances. Given my emotional state, I knew I’d end up permanently banned from flying if anyone tried to touch my daughter’s ashes.

I had never really thought about the amount of planning that goes into deciding what to do with someone’s remains. Before I flew home, my daughter, son, son-in-law, and I got together to divide Jessica’s ashes. My daughter, Amy, had two urns, a small one to keep and a larger one to scatter at a place that was special to her sister. My ex-husband also had a small urn to keep with him. My son, daughter, grandkids, and I all had necklaces to hold ashes that we could keep with us all the time. The rest of her remains would come home with me to Florida. My plan was to spread the ashes in New York, where my sister and nephews live. My parent’s ashes are there in a grove of trees in my nephew’s backyard. I thought Jessica would like to be with them. It was a plan the family agreed on. Then I got home.

Once I came home the reality of my daughter’s death hit me again…pummeled me is more like it. I realized that her ashes are all I have. They are the only physical remains of my daughter…and they are all I have left. And I cannot let them go. I won’t. Some people might think it’s morose or that seeing the urn everyday will make me sad, but I am already sad. Nothing needs to remind me of my daughter because I think about her all the time. I can look like I’m focused on something, but she is always on my mind.

I’ve been reading books about dealing with the death of your child. They have described the loss of a child as the ultimate or worst loss, and I would have to agree. The authors talked about finding the “final resting place” for your child. Those words had not occurred to me. They made it sound like Jessica’s spirit would not find peace until she was in this designated “final resting place.” I thought New York would be this mystical place. I had a small urn of ashes that I would keep, and I’d spread the rest with my parents. That was until the reality of parting with them sank in…actually letting them go or having her “rest” away from me. That’s not gonna work for me. And I don’t believe it would work for Jessica either. I think she’d be pleased that I can’t let them go…that I can’t let go of any more of her. I think sometimes she doubted how important she was to me. I think she knows now. So, the small urn…and its small…will go to New York and she will stay here…with me…on my bookcase. And I will be with her every day.

All of this pondering of my daughter’s ashes got me thinking, why wouldn’t her final resting place be with me…I’m her mom. Why would it not be with her dad, her sister, her brother, her niece and nephew. All the people she loved so deeply. Shouldn’t she be with her family? Shouldn’t she rest with us? Because no one loves her as much as we do. No one misses her as much as we do. No one feels her absence more than we do.

I have amended my instructions to my son and daughter. When I die, which I hope will be many, many years from now, they can do what they need to with my ashes. I understand now that those decisions will have everything to do with what they need and what will comfort them. Turns out I don’t need to dictate or control that decision. Just like now, I only want what’s best for them…in the end, that will be best for me too.

I know now, more than ever, that the only thing that matters is how we love people. That really is all we have. Jessica, we love you so much. Rest now embraced by your family. Rest knowing how important you were to each of us. You rest well my beautiful girl…I’ll be right here.

Mary Did You Know

~ Kai Raines ~ Leave a comment

Finally pregnant after years of frustration

Bursting with joy

Filled with dreams of who my baby would be

Who they would become….

Mary did you know you’d be told that you were having a baby

Did you wonder about the baby you would give birth to

Who he would be

Or were you just in shock

Terrified at the circumstances of your pregnancy

Frightened of what the future might hold…for both of you

Mary did you know how to raise a child

I didn’t…maybe that’s why humans start as babies

So, we have a chance to learn as we go

Were you amazed when he was born

I was…she was so small…so perfect

It was so scary and so wonderful

Mary did you ever feel like a failure

Like you weren’t equipped to raise another human

Did you worry that you were just a child…raising a child

That you were learning to be a parent while you were parenting

Figuring it out as you went along

Mary did you know what adolescents are like

I didn’t…I thought I did

There’s no knowing until you have one

Did your baby yell at you

Tell you he hated you

Did he disobey and challenge you on everything

Did you realize how little control you have over your children as they grow up

Were you overwhelmed…I was

Were you scared of who he might become.

That he might harm himself by the choices he made

Mary did you know the sacrifices you’d be asked to make

Sleepless nights with an infant

Sleepless nights with an adolescent

Wondering if they’d make it home safe

Prayers thrown out as a security net

But there is no security net

Mary did you know you would watch your baby die…I didn’t know

Did you know he would be so young…she was so young

That you’d be there for his last breath…I was there for hers

Did you know your heart could shatter in an instant…a million little pieces

Like mine

Did you know that prayers wouldn’t matter

He was going to die…she was dying

I couldn’t stop it

With all my heart I wanted to stop it

Did you know you would wake up every morning

And for an instant forget he was dead…I forget

And then reality knocks me on my ass…again

Mary did you know it’s impossible to let them go

I can’t let her go

I want another day…another hour…one more minute

Did you know there are no words to describe the pain…the loss

I have no words…no adequate words

Did you feel like you would drown in your despair…seems possible

Did you see a way past the heartache

I have never felt so sad

Did you get over his death…move on with your life…I didn’t think so

I can’t get over her death

It is impossible to just move on

You didn’t either did you…I know

He was your son

She was my daughter

Did you want to scream when he was mentioned using the past tense

Me too…she’s still my daughter

Mary did you know your grief would be overwhelming

Too enormous for one person to bear

The worst moment of your life

The worst moment of mine.

Mary, if you had known it all

Would you still have said yes…me too

I wouldn’t trade one moment with her

Not one memory

Did you think about all his “firsts”

I did…her first smile, her first step, first laugh, first words

Mary did you know the world could fall apart in an instant…and bury you

Did you learn it can’t be pieced back together…not like it was

The bottom drops out…and there you are groundless

Did you know your child can be fine and then be dead…actually dead

Children don’t die before their parents…ours did

I didn’t know

Did you know that people go on with their lives

Like nothing happened.

How can they

When I don’t recognize the world now…not my world

And I can’t see my life without her

Mary did you know you’d have to rebuild your life…without him

Me without her

Did you know how his siblings would hurt…and that you can’t fix it for them…or yourself

This cannot be fixed

Did you fear life would never be okay again…I do

Did your world stop with his “lasts”

His last touch, last look, last words…his last breath

Her last breath

Did your world crumble when he died…she died

Mine did

Mary did you know…I didn’t either

Mother Mary Came to Me

~ Kai Raines ~ 1 Comment

I have been struggling to write anything since my daughter died. Maybe because I can’t focus long enough. Or because I don’t have the words…I’m not sure I have any words. And maybe it’s fear. Fear that if I’m vulnerable with my writing, I’ll cause myself, or others, even more pain…and I feel so raw already. It’s like I have a gaping chest wound that is continually ripped open…by a picture, a memory, a thought…anything really. Sometimes my tears are gentle…quiet. Sometimes not so much. I watched a video of Jessica and couldn’t stop crying. I’m not sure I’ve ever felt this depth of grief before…grief isn’t a big enough word for how I feel. Anguish. I think that’s it…” a deep, intense state beyond simple sadness, involving helplessness, despair, and sometimes, agony, severe distress.” Those words come close to describing how I feel. When I think about Jessica being gone and not seeing her anymore, I want to scream and rip my hair out. I can’t cry hard enough to get the pain out. I want to wail and scream and break shit. It feels too big…too powerful…too consuming.

When my kids were babies, and when the grandkids were babies, I’d hold them when they were sleeping. There are few things as wonderful as holding a sleeping baby. I’d recline with them and they’d lay on my chest. We’d stay that way for however long they napped…both of us content…not needing anything. I treasure those memories. The day before Jessica died, I was with her in the hospital. She was agitated and restless. She couldn’t get comfortable. I stood by her bed talking to her and rubbing her back, but she just couldn’t be still. Then suddenly she sat up, tucked her hands next to her cheek and laid her head on my chest, and went to sleep…just like when she was a baby. It was a precious moment that I won’t ever forget. She didn’t rest long but I was grateful that for a few moments she was content…she was content with me. She needed her mom and I was there. She let me be there for her.

I was with my daughter when she died. She had been sleeping and was not opening her eyes anymore. So, I was surprised when she looked at me. We held each others gaze and I told her how much I loved her. Then her breathing changed dramatically and she died a couple minutes later. I think she opened her eyes to say goodbye…and opened her eyes so we could say “I love you.”

As I was trying to sleep that night, I found myself thinking “Mary would know how I feel.” Mary as in mother of Jesus Mary. Now if you’re surprised by that, I bet you aren’t as surprised as I was. I do not generally find myself thinking about Mary. The image that came to mind was the Pieta in St. Peter’s Basilica in Vatican City. Mary cradles the lifeless body of Jesus on her lap…I’m sure much like when he was a baby.

I was drawn to Mary because she was a mom and her baby died too. She knew what it felt like to see your child lifeless in front of you. She understood the urge to scream and yell and demand that they breathe again. The hope that what you see is not real. Because how can she be gone? And then the torture of leaving them because there is nothing more you can do…and you aren’t allowed in the morgue even if it’s just because you don’t want her to be alone.

Those were the worst moments of my life. I felt desperate to have my little girl back. Maybe in my hour of darkness, Mary came to stand beside me…to help me bear the unbearable. Maybe to be a witness because she understood…and I was desperate for someone who knew how I felt. And her words of wisdom? Perhaps that I wasn’t alone. And the anguish, the sadness, the despair…let it be.

My Beautiful Girl

~ Kai Raines ~ Leave a comment

Wednesday was the funeral for my daughter Jessica. I wrote this letter o her and my grandson, Javon, heroically read it for me. It was impossible for me….

I don’t know how to write a eulogy for my daughter, so I thought I’d write her a letter.

Jessica, my beautiful girl,

No one ever prepared me for what to say if you died. Maybe because there aren’t any words…except all the bad ones…the F bomb being my favorite, as you were well aware. I can’t stop thinking that this is not how life is supposed to go. This was not supposed to happen. You were not allowed to die before me.

I’ve been thinking about a Brandie Carlile song called “You Without Me.” Before Christmas I was thinking about you and Amy and Ben and watching you all grow up and separate from me and become your own people…amazing and beautiful people I must say. Brandie Carlile wrote that song about watching that happen with her daughter who is now 10. She says,

“Was your smile always crooked? Was the freedom ever free?

Do you kick the rocks between your feet, after all this time with me?

You can listen to your own records now, decide what you believe

You can pray on stars and skip the gods like stones across the sea

But I would know you anywhere, I lost myself in you

Heavy are the hands that you are free to slip right through

Do what you have to do

There you are, my morning star, I wondered when you’d show

Give me just a quick thumbs up, a wink before you go

I never heard that voice before today, I remind myself to breathe

There you are, it’s just you without me.”

That’s how it should be Jessica…you without me…30 years from now. Not me without you. I’m not sure I know how to be me without you. I did lose myself in you, but I also found myself…as a mom…your mom.

I know that life was a struggle for you. I wanted so much to do or say something to help you realize how wonderful you are. You were so smart and so kind and so funny. Some of my favorite times were with you, Amy, and Ben all of us laughing until we cried.

My sweet girl, I know that this life was too hard and too scary for you. I’m glad you’re without fear now. We had some challenging times when you were growing up. You were still apologizing to me for your teenage antics throughout your 30’s. But I wouldn’t trade one moment of being your mom.

When you were born you didn’t cry like most babies. When the doctor handed you to me, you just opened those beautiful blue eyes and looked at me. No crying or fussing…just looking, as if to say, “it’s me mom….I’m finally here.”

Right before you died, you opened your eyes and looked at me. You hadn’t opened you eyes for over a day. You looked at me and held my gaze as if to say, “it’s me mom…I have to go now.” Your breathing immediately slowed and minutes later you were gone. I had the chance to tell you how much I love you. I told you there was nothing to be afraid of now and that it was okay for you to go…even though there was nothing okay about it. I stroked your cheek, kissed your forehead, and told you that I have loved every moment of being your mom. And then you were gone.

I was with you for your first breath and your last. Thank you for that.

I believe that you are in a peaceful place now. A place without fear. A place where Roro, Foddy, and Grandma Jojo were waiting for you…and where they will care for you now. And I know they will…I gave my parents a long lecture, with a lot of instructions, the day you died.

Now we try to rebuild a life without you in it. Me without you. All of us without you. I’m not sure how. I will miss you forever. I will be grateful for you forever. And I will love you forever…my beautiful girl. Rest well.

Hurricane Milton…Or A Tiny Little Rose?

~ Kai Raines ~ Leave a comment

While my parents were alive and living with my wife and I, we occasionally talked about their deaths and their last wishes. Neither of them wanted any kind of service or memorial. No wake. No funeral. No casket. They wanted to be cremated. I asked them what they wanted done with their ashes. My dad said, “Just throw them away.” And my mom, as only she could, said, “Just throw them on the ground and walk all over me like everyone has my whole life.” So, I told them both “I’m not doing that” and suggested that we put them in the Gulf. They agreed or gave me their version of “whatever.” I was happy to take that as a yes.

When my sister came for a visit, the topic came up again. That must be super annoying for people in their 80’s and 90’s, everyone always bringing up your death and pushing you to plan for it. I was thinking my plan is to avoid it as long as possible…as if it is up to me. My sister said that we could send the ashes to Switzerland and have them made into blue diamonds. And why you may wonder? So, we could have a crown and put the blue diamonds in it. And then as each person dies another stone gets added to the crown. I said, “Who’s gonna wear all the dead relatives on their head?” I don’t remember her response. Mine was, “It’s sure as shit isn’t gonna be me.” Then she said we could have them compressed and made into frisbees and send them flying out into the Gulf. I’ve got to admit that one sounded fun…probably only because I wouldn’t be one of the frisbees. We had some good laughs with my parents over both of those ideas. I know you can find all kinds of stuff on the internet but who searches for what to do with someone’s ashes…besides my sister, I’m not sure. My sister is super funny and a great storyteller…she had both covered here.

In the end, of course, it was up to us. We decided that Kathy, Rick (sister and brother-in-law), Gayle and I would go out on a boat together and spread their ashes into the Gulf of Mexico. We found a place in Dunedin that has daily boat trips called “Burial at Sea” that are specifically designed for spreading ashes. I guess “burial at sea” is hard to remember because my brother-in-law referred to it as “the death boat.” Naturally that’s the name that stuck.

Of course, as soon as we had a simple plan our adult children chimed in and wanted a seat on the boat…they were their grandparents after all. And since they all have children, all the great grandkids would be here too. So, we arranged for the death boat October 14th at 1:00. Fortunately, it’s a big boat because we went from 4 people to about 20. We finalized plans for places to stay and food for a meal together after the death boat. And then there was Milton.

One of the reasons we picked Clearwater for retirement is because Tampa hasn’t been hit by a major hurricane in 100 years…and we’re about 15 minutes from Tampa. Now Milton was threatening to end that streak. WTF?! Hurricane Helene had just devastated the big bend area of Florida. We waited and hoped that Milton would decide to go somewhere else. Although, you can’t really hope that the hurricane hits someone else. I was hoping it would just evaporate…. that would have been the most convenient outcome. Clearly, I missed my calling as a scientist.

If you saw any news at all you are aware that Milton did not just go away. It became a category 5 hurricane. It did shift south and so Tampa, and Clearwater were spared a direct hit, but it was crazy. We were on the outer edge of the eye of the hurricane. We didn’t get raindrops, not even big ones. We had walls of water falling…wall after wall of rain for hours. All the while, the wind raged. We had wind speeds up to 129 mph. Milton was a category 3 storm when it hit the Florida gulf coast.

I had panicked calls and texts from family and friends worried for my safety. My wife wanted me to go to Atlanta. It was not that simple. First, I was not under an evacuation order. More importantly, I had less than a quarter tank of gas. “90 miles,” said my car. Now I’m not good with geography but even I know you cannot get to Atlanta with 90 miles worth of gas. And in case you’re thinking, “Why would she not have filled the tank sooner?” “Poor planning.” That’s a little judgy of you. I did not fill my tank because there was no gas…as in none, nada, zip, zero. I went to numerous gas stations, and they all had the little yellow bags on the pumps, like they do when they’re broken, with the addition of plastic wrap. All the pumps were prepared for Milton…and all the gas was gone. That was Tuesday. I couldn’t get gas until Monday. By that time my car was finding a gas station for me.

That was the beginning of Milton. The serious warnings began Monday. They were amped up on Tuesday and included evacuation orders for zones A, B, C, and all mobile homes. We live in zone D. The airports closed Tuesday morning. Everything else closed Tuesday afternoon. So, the death boat plans were quickly sinking. We didn’t even know if the boat place would still exist on Sunday. Our outing seemed incredibly unlikely…even more so after the airport closed, and all the flights were cancelled. I’m pretty good at recognizing the obvious. No ashes were leaving my house that weekend.

When I was talking to my wife, during the hurricane, and sending her videos, I told her that I thought my mom was fucking with the weather. She said, “Your mom has no control over the weather.” I told her I wasn’t so sure. The next day I was talking to my sister, and she mentioned that Rick thought my mom was causing the hurricane because she doesn’t want to be in the water. My mother was afraid of water her whole life. I wonder why she agreed to a burial at sea. I’ll never know. I was texting my nephew, to give him an update on the death boat and Milton. He told me that he wondered if maybe Roro (that’s what all the grandkids called her) brought the hurricane. And finally, I was talking to my daughter, and she told me she thought the same thing. I don’t know if my mom can influence the weather, but me and the family believe she can and she did.

So, there will be no burial at sea. Florida can’t take another round of the “wrath of Rose.” We have an alternative plan. Their ashes will be spread in New York somewhere my parents loved. They spent a lot of time at my sisters. They’d visit for 3 or 4 weeks at a time. That’s where their final resting place should be. They were happy there, surrounded by the love of their grandkids and great grandkids…and of course Kathy and Rick.

I hope in the spring my side of the family can travel to New York and give my parents their final resting place…at last. A lot of love and planning went into our decisions for my parent’s ashes. I hope they could feel that. Because in the end all that matters is how we love people. And they were loved…still are.

When I’m 64

~ Kai Raines ~ Leave a comment

So, I had a weird thing happen this week. First, it’s my birthday week. I currently have a line from a Beatles song in my head, “Will she still need me, will she still feed me when I’m 64.” And I’m about to find out…although she doesn’t usually feed me because she hates to cook. Anyway, my wife had to go back to Colorado for work. So, I am here in Florida, and she is far away in Colorado.

In case you want to feel sorry for me, don’t. I’m not here alone. My stepson, Justin, is here with me. He just moved here about 10 days ago…and of course we have the Bulldog sisters too. That’s our dog, Abby, and her sister, Presley. Presley is Justin’s dog. They are sisters but from different litters. They are so much alike it’s crazy. They are both so fucking stubborn. And they even sleep the same. It reminds me of the theme song of The Patty Duke Show…”they walk alike, they talk alike, what a crazy pair….” Yep, I’m 64 alright…and that show was in black and white. Anyway….

A few days ago, I noticed a package sitting on the table by our front door. It seemed like it just appeared there. I asked Justin about it, and he told me he brought it in the night before. I hadn’t noticed it until the morning. I thought it was strange that the package was addressed to my dad. My dad died almost a year ago…so he didn’t order it.

Being quite brave, I decided to open the package…the next day. Inside the package was a book called Walking the Himalayas. That was weird. I had wanted to read that book for a couple years. It was in my Amazon cart. There was no note in the box and no return address. It was really strange.

I puzzled over the package for a bit and then I came to the only reasonable conclusion…my dearly departed dad sent it to me. That had to be it! This makes sense for so many reasons…my dad died so no one is sending him gifts anymore. Also, there wasn’t a note with the book. And no one would send my dad a book because he couldn’t read anymore because of his macular degeneration. And finally, it’s a book I wanted and it’s my birthday. It was definitely from my dad. I told Justin all of that and he appropriately responded with, “Whoa.” Ya whoa!

I was pretty excited to share this news with my wife when we talked that night. I told her the story and all my well thought out reasons why the book was from my dad. She did not say whoa…she said something to the effect of, “oh, crap.” Not her exact words but the emotion was there. She then told me that my sister had texted her and asked what I’d like for my birthday. Gayle told her to look at my list on Amazon…I know you’re following me here. Then my sister told her she was sending a book, Walking the Himalayas, and it would be addressed to our dad but that it was for me…and I should not open it until my birthday.

Well, my sister thought the story was funny and she jokingly asked me to thank Gayle for her. When I shared that with Gayle, we both had a good laugh. I’m grateful for the gift from my sister…even though I opened it before my birthday. I’m sure my dad would have wanted me to.

So happy birthday to me and go Rays! I’m off to a baseball game today where I can be my geeky self and keep my scorecard. I appreciate all the love for my birthday…and it turns out she will still need me when I’m 64…I can feed myself. Remember that in the end all that matters is how we love people. So, let’s love enthusiastically.

Why Would It Be Different In Heaven?

~ Kai Raines ~ Leave a comment

Mother’s Day was Sunday. I was asked several times how I was doing on my first Mother’s Day without my mom. There is no simple answer to that…or maybe no nice answer. The last two Mother’s Day’s were horrible. My mom was angry and mean. She spent the day yelling at my dad and I and slamming things around. So, it would be dishonest to say that I really missed her Sunday. I was grateful to spend this Mother’s Day with my daughter, grandchildren, and great-grandson. It was a beautiful day.

Prior to the last two years, I didn’t see my mom for twelve years. And although I sent her a text message each year, I know she didn’t read them…possibly because I sent them and also because she didn’t do texting. I always struggled to find a Mother’s Day card for my mom. They tend to be pretty mushy and sentimental…two things I don’t feel about my mom. I wouldn’t give her a card with words I didn’t mean and so I always got her funny cards, which she hated. She liked to be gushed over. The last two years I gave in and gave her sentimental cards and they didn’t make any difference to her. She wasn’t speaking to me, so she didn’t even acknowledge them.

The last time I saw my mom she was not in a great space or mood. She looked at me and pretty snarkily said, “I should have never moved to Wisconsin!” I told her we weren’t in Wisconsin. She asked where we were and then said, “I should have never moved to Florida.” Shortly after that she turned away from me, curled up, and went to sleep. That was the last conversation I had with my mom. She’s been on my mind so much.

I’ll be honest…I’m tired of grief. I am way the fuck over it. It isn’t as neat and orderly as I’d like it to be. It’s a fucking mess. I’m a fucking mess. I would like to know when I’ll be okay…when will I just feel like me again. Maybe I won’t…I mean I am an orphan after all. I would like to know something else…actually I’d like to know everything else, but specifically, right now, I want to know what it’s like to die. What does it feel like? I have some fears around dying…not so much the actual death but the being dead. I’m afraid I’ll miss people and be sad and lonely. I suppose at that point it won’t matter…it’s not like I can be suddenly undead…aren’t zombies the only people that can do that? Are they even people? I digress.

This is what happens to me when my wife travels. My mind runs wild with unanswerable questions. She had to go back to Colorado for work. Leaving my English Bulldog, Abby, and I alone in Florida. It’s the first time I’ve been here without either of my parents alive. I’d like to say Abby is helpful, but mostly she’s just sleepy. She needs her full 22 hours of sleep a day.

P!nk wrote a song after her dad’s death called, “When I Get There.” In the song she asks why things would be different in heaven than they were here. Or why would her dad be different in heaven. I think she says he was always first in line, and he always said what was on his mind…things like that. It’s funny because I’ve been wondering the same thing…mostly about my mom. Why would things suddenly be different just because someone died? Why would she be different just because she’s dead?

I floated this idea past my wife, just to see what she thought…she didn’t like it. She reminded me about all the accounts people have given of near-death experiences…I guess more accurately they are dying and being brought back to life stories. People report seeing a bright white light that’s warm and welcoming. They hear the voices of people they love who have died. This reassures her, and millions of others, that there is a heaven, and it’s our final destination.

Personally, I don’t believe in heaven or hell. I do believe in reincarnation. The energy that is the core of who we are, our soul or spirit, has to go somewhere. I think it comes back in another form. I’m pretty sure I’ll be back as a gnat or an ant, because I’ve killed many of them when they’ve invaded my home. Side note…The other day there was an ant on our counter. Now instead of killing it, I picked it up and went to put it outside. And that little fucker bit me. It left a red lump on my palm. That’s karma baby…but I still didn’t kill it. I used to tell the little kids in my mindfulness program that we don’t kill things just because we can…they would usually stomp ants anyway. I tried.

I have read several of books by James Van Praagh, the psychic medium. I’ve also seen him in person and watched him connect people in the audience with departed loved ones who have a message to give…or just something to say. He’d ask the audience if a name or specific situation, that he was describing, meant something to anyone in the audience. Someone would raise their hand and then he would begin to tell them about who was there to talk to them and what they were saying. He was able to provide very specific information about people, situations, causes of death, etc. He’s really impressive.

I have heard James Van Prague talk about what happens when we die. He had said that through his readings he’s learned that there isn’t a heaven or hell, although he does use the term heaven anyway. He explained that when we die our energy goes with like energy. If you were a loving and kind person in your life you would be surrounded by others with similar loving and kind energy. If you were mean and hateful then you would be attracted to the mean and hateful energy of the departed. So, in a sense we create our own heaven or hell. I suppose that’s good news and scary news.

Now I was raised Catholic. I come from an Irish Catholic family that has its attachment to Catholicism rooted in Ireland. My grandmother went to church early in the morning, before she had to work, at least several days a week. Then church on Sundays and confession probably every week. Now all of that is to say that there was no other option than being Catholic in my family…and it wasn’t really an option to just not be anything.

In my Catholic training (catechism classes…yay.) I learned about purgatory. Purgatory is an intermediate state between death and heaven. It’s a place of temporary suffering. Merriam-Webster says that it’s a “place or state of suffering wherein…the souls of those who die in God’s grace may make satisfaction for past sins and so become fit for heaven.” I’m gonna have to say “no thank you” to that good news…yikes!

What I don’t understand is if you go to confession, as required in the Catholic Church and you do your Hail Mary’s, or whatever the priest assigns, you’re supposed to be forgiven…so why the pit stop to be punished again? Although it sounds super fun…I’ll give it a hard “oh fuck no.” Why change if you still end up suffering before you’re good enough for heaven? Heaven being the goal for most people. I don’t believe in purgatory either. I do think there’s a gap between when we die and when we are reborn, but I don’t think it’s punishment.

So why is all this on my mind? I’ll tell you. I worry about my mom. I worried about her when she was alive, and I worry about her now. My mom was not a happy person…at least not the mom I experienced. She had a difficult life as a child and that shaped who she was and how she saw herself. She didn’t believe anyone loved her. She didn’t think my dad loved her, even after almost 70 years of marriage. She was damaged as a child and that kept her from fully accepting who she was. It also kept her closed off to recognizing and receiving love. She may not have had love as a child, but she was loved by many as an adult. It’s very sad to me that she couldn’t accept love. I worry now that she might feel alone. She didn’t like to be alone. She was scared alone. Nothing I learned in catechism told me how to address those fears.

Personally, I believe that our souls or spirits are timeless because we’ve been here before…many, many times. I don’t think that a love connection you shared with someone while you were alive is gone when you die. I think that love bonds go on forever. Maybe it’s like object permanence…even when a person you loved is gone from your presence, you know they still exist out there somewhere. And the love you shared with them continues.

I think part of the process of death and reincarnation is our souls working out past karma…karma from our current lives and past lives. James Van Praagh has explained that after death people of like minds gravitate together and share a natural attraction. So, for example, a soul like Hitler, who created mass destruction, devastation and death, will be attracted to similarly dark energetic souls.

James Van Praag describes “heaven” as having many levels and that the one that we enter right after we die is similar to our existence on earth and that people eventually evolve from these earth-like levels. He says that our soul’s movement is enabled by understanding that religion is a human tool and is not needed in the higher planes. From his experience communicating with spirits, he has learned that the only religion is love.

If we enter heaven with a similar mindset that we had while we were alive, then why would things be different in heaven? If you go to heaven as the same person you were two minutes before you died, then what’s different in heaven, besides being dead? I wonder if that’s confusing to a spirit…seems like it to me. I guess there’s no instant angelhood…I’m not sure that’s a word or a thing.

My mom was an angry person and she held on to resentments. I worry that heaven might not be great for her right now. I want her to find peace and rest but I’m not sure that’s immediately available to everyone. I don’t want her to live in an eternal place that’s as painful for her as her life was. The good news, according to James Van Praagh anyway, is that there’s no mental illness after death. Mental illness is a condition of the physical world. I don’t know who my mom would have been or what she would have been like without mental illness…maybe now she’ll have the opportunity to find out.

Honestly, I hope there’s healing in heaven…if there is a heaven…or wherever we end up. I don’t think there’s a place up in the sky where the dead, the “good” dead, reside, playing the harp and laying on clouds. But if heaven is where we go to work out our past karma and await rebirth, that makes more sense to me. If our mindset can continue to evolve and progress even after we die, then the work never ends…the work of becoming never ends. We are always becoming even after we cease to be on this planet. Maybe we have the ability for clear retrospect when we die. Maybe we can see more accurately what was available to us when we were alive. Maybe we see missed opportunities or missed understandings. Maybe we get to have all that we thought we missed out on…love, belonging, gratitude, rest, being seen and loved for who we are.

I definitely have more questions than answers with all of this death stuff…and I’m in no hurry to experience it firsthand. What I do know for sure is that in the end all that matters is how we love people. Because love wins…always.

And for you mom…May you find peace. May you find rest. May you know you are loved.

Difficult Teachers

~ Kai Raines ~ Leave a comment

I was catching up on the tv show “The Good Doctor” earlier this week. This is the final season so I guess it’ll be extra dramatic…as if a drama needs more drama. Anyway, a main character was murdered. He was killed in an anti-Semitic, anti-gay hate crime. Being a card-carrying member of the LGBTQ+ community that was difficult to watch…even when it’s not real…probably because it is real. So, Asher died and there was very sad funeral. All the people were crying, and I started crying. Pretty soon I was sobbing…and sobbing.

Have I mentioned that I’ve been having a hard time grieving for my parents? I guess mostly for my mom. I have such mixed-up feelings about her. I’ve been pretty shut down…sad but shut down. I feel confused about grieving for someone I loved so much but was angry at and deeply hurt by. I have unresolved feelings about her and I’m not sure how to resolve them or come to terms with them…or even just how to not allow her to hurt me anymore. I realize she’s gone but I have an excellent memory…and she was a powerful figure in my life.

I read a story about Buddha where he talked about a personal attendant of his who aggravated him and made him angry. His attendant was difficult to deal with. Buddha had the choice to send him away, but he didn’t. He said that it’s the difficult people in our lives who are our best teachers. Those are the people who challenge us to really look at ourselves honestly. My mom was definitely one of those people for me.

Growing up I didn’t want to be like her. I was afraid of her. I think I developed my personality in reaction to her…or reaction against her. I am who I am in large part because of her. I had an idea of who I thought she was, or how I thought she was, and I was determined not to be like her at all.

I never thought I was much like my dad either until my parents lived with us. I have some the the same quirky habits he had. My wife would say annoying not quirky. If he wanted something to eat, he’d tell you, but he’d also tell you exactly how he wanted it. For example, chicken noodle soup in a cup, not a bowl, with a chicken leg in the cup so the soup would warm it up. Or 3 crackers with a small spoon of cheese spread, and 3 olives. My mom got so mad at him for that. I got mad at him for mansplaining to me how to clean up my dogs’ vomit…so I understand the frustration. When my wife offers to make me a sandwich, I give instructions too…very specific instructions. That is why she doesn’t make me sandwiches anymore. I get that.

In a song from the musical, “Wicked” called “For Good.” It’s Elphaba and Glenda singing about their friendship. When they first met, they hated each other…there’s a song called “What Is This Feeling” and what they feel for each other is loathing. But I digress…the change song talks about people coming into our lives for a reason, which we may or may not understand. They come to teach us something. We are led to people who will help us to grow. The women say that because of their friendship they’ve been changed for good…as in permanently. They question whether they’ve been changed for the better but definitely for good. At the end of the song, they say that because they knew each other, they have been changed for the better…and for good.

I became who I am because of my parents. I was definitely changed for good…and I think for the better. There’s an ebb and flow in relationships…all relationships. There are times we’re closer to someone and times we feel more distant. Sometimes we need the proximity and sometimes we need the space. Relationships are constantly changing and constantly in motion. That continuous flow changes us. Rocks are shaped by the movement of water. Water wore through rock over millions of years and as a result we have the Grand Canyon.

People are shaped by movement as well. The movement of negotiating relationships…all of them. Personalities rub against each other and the rough edges of who we are, the things we cling to smooth out over time. They change us for good. We are not the same person we were at the beginning of the relationship. They also change us for the better if we are intentional about our relationships and our interactions. We become more of who we were meant to be…we become more truly who we are.

Some people believe that we chose the life and family we’re born into long before we are ever born. Maybe I did. Maybe I chose all the pain and challenges I was born into. I know that because I knew my parents, as my parents, I was changed for good, and I was changed for the better. I am a better person because of them.

Let’s be real…we are shaped and sculpted by all the relationships we have in our lives. And we are a force that shapes others as well. Let’s lead with love in all of our interactions. Let’s be aware of what we’re doing and how we are impacting the people we come into contact with each day. Let’s love to change people for good, and because they knew us, for better. Because in the end all that matters is how we love people…let’s love them well.