Category: dying

The Changing Mind

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When my mother died in 1984, Dad saw the light. He’d been asleep in the chair next to Mom’s hospital bed when she passed on. My sister Jo Ann was sitting with her as she left this place for the next. When Jo Ann woke Dad it took just a moment. In that moment he saw that bright light that some speak of. I’ve always believed that he watched Mom walk on. It was earlier that day that he’d gone to the chapel and changed his prayer. Before that he’d always prayed that Mom’s cancer be healed. That day he accepted that her time was done and prayed that she be at peace.

I’ve often wondered about the connections between the physical and the spiritual worlds. How are we called? How does the connection speak?

Now, my Dad is 91 and his mind is changing. The way he speaks of the world is different. Dad has always seen himself as less intelligent because he didn’t finish school. In today’s educational system, I wonder if he’d been taught to read differently and had a different outcome. Dad grew up, in his early years, speaking Luxembourgish at home and didn’t speak English as his primary language until he was at school. It had to be tough to step in to a learning system and try to learn in a whole new language as a little boy who just wanted to be out on the farm running around and helping his dad. Then his dad left. Grandpa died in August of 1935. It had to be traumatic for Dad. I remember the story. They were out in the field. Grandpa was back on the hay wagon and Dad was driving the horses. Grandpa called out to him “Slow those horses down! You’re killing me back here!” Later that day Grandpa had what seems to have been an unrelated appendices attack. He was taken to the hospital and never returned. Grandpa was Dad’s hero. I wonder how that experience continued to impact who Dad became.

I know that some years later Dad was working on a farm. He skipped work one day. On that day the farmer’s child was playing where they shouldn’t have been and was hit by a truck and killed. Dad spoke about that event with sorrow and guilt. He told us how had he gone to work he would have been in that truck. He always believed that he would have seen the child and they wouldn’t have been struck and killed. There’s nothing to prove that one way or another. It’s just something he carries with him.

I’m thinking about this all as Dad’s mind changes because of some of the things he’s saying. He mentioned several times that he needs to go back to work, that he’s been gone too long. He gets worried about not getting to his job or sometimes he talks about getting back to school.

I find myself wondering if he’s unconsciously planning for his own journey. Is this how he’s preparing to go back to be with those he used to know? It’s a land of confusion. He doesn’t know this world fully anymore, nor does he belong to the next yet.

He’s not the same as he once was, but having this long process of goodbye tells me how gifted we are. Right now his dementia is a largely a gentle confusion. He gets lost and sometimes frightened, but not angry much yet and he generally knows family and friends or if he doesn’t he at least knows that they’re good people and probably someone he did know.

I don’t get to see him much, living a state away. But, he still recognizes me on the phone and other family see him almost every day. Sometimes I am near tears after talking with him when he’s confused or having a hard time with his phone and struggling to hear me. But, I feel so grateful, so proud to be his daughter. He is, to me, the symbol of strength and so wise.

As his mind changes, it seems more words of Luxembourgish may be slipping in again too. He always said he couldn’t speak it, but he could. He’d slip into it with friends. Now, sometimes a word slips in here or there to describe another’s behaviors. I don’t know the language at all, but can get the idea when he speaks of someone who talks too much or something like that.

The mind is interesting place. It is both sad and a great and joyous gift watching Dad’s mind taking him back to his younger days. I’m not sure that this story has gone anywhere, but it needed to be written to help me think things through. Thank you for reading.

Honoring the Dead– A Dream

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I thought I’d start with dreaming the night before last because of my brainspotting appointment, but apparently I was even more worn than I thought. The dreams didn’t begin until last night. I am strong believer in looking at dreams to learn. For myself, I find that in dreaming is where I put things together that I don’t let myself think in my waking hours. I can learn a lot if I listen to my sleeping self.

I was awoken by a dream last night where a student of mine had committed suicide. In waking life, I don’t know the person, but in the dream world I knew them well. I spoke at their ceremony to a crowd of many, a lot of young people there. I told them, “I am honored to be here, but I don’t want to be a giver of eulogies. I don’t want to see any of you here in this same place as our friend. I want you to remember that the best way to honor those who have passed is to live.”

I was thinking on this dream this morning and pondering how we treat death. I grew up Catholic. The first funeral I remember was of my Uncle Clarence. I must have been six or seven when he died maybe. He was a WWII veteran and his casket was draped with a flag. I remember a solemness and honoring. I knew he was an important man from how he was being honored. I don’t remember any more from there.

A few years later was when I really started seeing dying– my mom, my grandma, my Aunt Florence, my cousin Mary Sue, a classmate Steve, and other older relatives. I also sang in the church choir for our small rural congregation so I sang at funerals. I once counted it out, I’d been to 13 funerals in just a few short years. It’s funny now that I remember it was 13 funerals, but I don’t remember for certain how many years.

In my tradition people are expected a time of mourning, but honestly I don’t know how long it is. I know that shortly after the passing of the person there’s a funeral, a wake, and a burial. All this happens really quickly, just a day or two. All sorts of people shake your hand, maybe share a hug, and say “my sympathies”, a phrase they’d never use in any other part of life. Then everyone moves on and the dead person is gone forever. They’ve moved on to a perfect world called heaven, but how can it be perfect if the love you knew together isn’t there and they can’t reach you and you can’t reach them?

My adult spirituality has been influenced by many forces; Quakers, Hinduism, Buddhism, the Anishanaabe and other Native peoples, a variety of Christian faiths, and of course Atheists.

I learned quite a few years ago that the traditional folks among the Anishanaabe light a fire for four days and nights upon the passing of someone. This a time to honor their lives and the light helps guide their way into the spirit world. I learned more recently that the journey isn’t over at the end of those four days. For a full year people don’t speak of the person. This isn’t a hiding away. This is in respect. As the person travels to the spirit world, when they hear their name they’re called back. We honor them and let them move forward to let their spirits head home. At least that’s the way I understand it. I am a white girl just saying what I think I understand. I welcome those who know to tell me better or to tell me it’s time for me to hush.

I appreciate this. The beings who pass on aren’t whisked away to some pseudo perfect place and they’ve not lost contact with us. Even after that year, maybe even more so after that year, they are still there just on the other side of the river. That year, it isn’t a silencing. It’s a time to gather ourselves. I grew up in a world in which you grieved for some unknown period of time and then you were supposed to accept that the person was gone and move on. There was no more reason to grieve. You could remember on special occasions, but then let it go. Life isn’t that way. Those who’ve impacted us, impact us forever. Even when their bodies are gone their spirits remain and that’s o.k. that’s good. Carry those beings in a good way and honor them by being alive.

Those are my thoughts for the day.

Remembering What’s Important

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Image result for St. Coletta School

I remember, as a little girl, watching “Facts of Life” on television.  I always wanted to be one of those really lucky, smart kids who got to go to a boarding school.  It seemed so special, almost magical to have that kind of freedom.  It’s funny looking back at it now.  My older brother actually went to a boarding school, St. Lawrence Seminary,  and I visited him quite often as a young child.  I saw his boarding school first hand often.

I also saw St. Coletta’s.  I was thinking of it today, remembering how I loved to visit St. Coletta’s, how I was really kind of jealous of the people that I met there, how I wanted to live there in that wonderland.  I had no idea, as a young child, that the people who I met at St. Coletta’s had severe developmental disabilities.  I just thought they were happy and having fun.  Maybe they were.

St. Coletta’s is a special place in my memory because of a special woman who left the world this morning.  Sr. Phillip was my aunt.  She did laundry and care giving for residents of the school.

There are many of us in the world who hold that title “I grew up Catholic.”  It seems a lot of us hold an anger about that experience especially about the nuns and priests in our lives.  I don’t.  I don’t hold the same beliefs I did when I was younger, but I look back at some of the believers who’ve taught and guided me and I am inspired.

Sr. Phillip was one of those.  I remember her hands, scarred from years of work.  Her smile and twinkling eyes, her walk that really was just like a penguin.  Her hips and legs had to have caused her great pain.  For the last several years she depended on an oxygen tank.  But, she never complained.  She was truly happy.  So often we’re running from here to there acquiring stuff, seeking accomplishments, trying so hard to be greater than we are and falling short, disappointing ourselves and just being lost.

Sr. Phillip just smiled and laughed and enjoyed the people she was with.  She lived over 90 years.  I knew her half that time.  I don’t remember ever seeing her angry for more than a moment.  I think back now and know that she spent decades of her life working and living with individuals facing huge challenges in their lives.  She lived with a vow of poverty.  She also lived within a loving community, with a faith that meant a great deal to her, as a part of a family that she loved.  She had it all.

I thank her for reminding me what’s important.

Thinking Deep at 4am

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July 18th, 2013

A few weeks ago I had a seizure. It was a night like any other until I went to sleep. I had just gone to bed when my housemate heard unusual noises coming from my room. When I didn’t respond to her calls to me she looked in on me. She found me having what appeared to be what is now known as a generalized tonic-clonic seizure. They are more commonly known as “grand mal.” Because the seizure lasted several minutes and I appeared to be having trouble breathing she called 911.

In Madison we do 911 calls with style. They came with a firetruck and ambulance. I regained consciousness to see half a dozen uniformed men and women surrounding my bed. The really good looking guy was in charge of asking me questions. I did my best to answer those really tough ones like “what day is it?” Who knows what day it is when you’re awoken in the middle of the night? It’s tough to answer questions when you’re struggling to form words and figure out where you are and who these people are.

They decided to take me in to the ER. My housemate, Jennifer, met us there and helped me understand what was happening and was my advocate.

The days following that event were really tough. First, of all dealing with the migraine that came along with the two seizures that I had that night and all the other physical side effects. Secondly, exploring all the fears and new understandings that arose as well.

My family and friends have told me how lucky I was that Jennifer was there. I definitely was lucky. I’d thought for months that I might be having seizures. Now I have proof and can figure out how to address them. On the other hand, however, had she not been there I would have slept through it and just woken with a nasty migraine and nothing to fear.

So what does this have to do with organizing?

Lots I suppose. You can’t deal with the issues until you know what they are and you can’t change them, can’t win until you face the fear. It’s also a reminder to me that I am not permanent. There was a time before me. There will be a time after me. Some day my eyes will close for the last time and there’s a good chance I won’t know it.

How do we continue to do the good work with that knowledge, with a recognition of our miniscule space in the grand realm? Again I have no answers.

I do know that over the years I’ve had hundreds of conversation about burnout, trauma, stress, depression, and hopelessness as a part of what we do. I’ve been a part of many efforts to address such things. Some have helped. Some simply died away themselves.

I know that I struggle with those same things sometimes. I find myself losing my ability to feel the passion that I once felt. I am often left with just sadness and emptiness. I both miss the passion and am thankful to not have that intensity that has worn me out. Still, I look for ways to maintain and build my ability to feel and embrace and love this world and its beings.

We, as activists, organizers, and educators, need to figure out how to not just support others but support each other and ourselves. I find the last the hardest. There is always someone else who needs care, who needs support, who needs strength. They don’t jump in front of me in the line to receive care. I step behind them, push them forward. It’s easier to address another person’s needs than my own.

Tonight, or rather this morning I’m staying awake. I have to. I am going to get my brain scanned in the morning to see why I had those seizures. I have to be in a sleep deprived state. In a little more than an hour I will have been awake for 24 hours straight. Surprisingly I still feel quite awake. In fact, I’m going to take a shower and go for a long walk with the dog when I’m done writing this. It’s been a while since either of us has seen a summer sunrise.

I hope to learn something there that will help me move toward caring more for myself and through that care rebuilding my passion. I ask my fellow activists, organizers, and educators out there, don’t wait for the seizures and brain scans. Show yourself that love and caring that you save for those you defend today and every day. If we are to be in this work for the long haul, we need to be here for the long haul.