Lighting the Chalice for my Spiritual Home

First Parish Church, Chelmsford MA

When I was trying to figure out what to talk about today I was reminded by my husband Ron that this week marks 20 years since we first started attending First Parish. 

TWENTY YEARS.

It’s gone by quickly but has produced so many memories for me. High school youth groups, pot luck dinners, Coming of Age mentorships, new member gatherings, small group discussions, and lots more.

The Gift of Generosity is the Soul Matters theme for this month and as I look back on the past 20 years, I am struck by the generosity of First Parish. Not just the monetary generosity that has kept our church community healthy and thriving, both for us and for our next generations. But also the generosity of spirit that I’ve experienced here.

I see it every day especially as a member of the Pastoral Care and Service Team. Not just our team but many others here are dedicated to helping our community and its members be whole.

At social hour we host a table for folks to come by and write a card to someone who is in need of some emotional support. Maybe they’ve experienced a loss, or are unable to attend in person, or are going through a difficult time. It’s so beautiful to see our table bustling with activity. It’s there that I witness just one of the many places that displays the generosity of spirit that, to me, defines First Parish. 

That generosity was the first thing I noticed when I arrived here 20 years ago. We were warmly welcomed by others during the service and then we took another leap of faith by joining complete strangers for coffee downstairs after the service. We were surrounded by folks who genuinely wanted to make us feel included and valued. 

It is this spiritual generosity that keeps me here at my second home. In a country that is becoming increasingly intolerant of any and all religions, and anything that is not in their narrow view of the world, I find even more reasons to belong to First Parish where I am accepted for who I am with all my faults, my beliefs, and my questions. 

So I light the chalice today for the generosity that Ron and I have received here and for the hope that First Parish will always be here to envelop others in that same spirit.

A tribute to a legendary friend and human

 Below is the eulogy for my dear friend Carlene.  She was one of a kind.

 Good morning. My name is Kathy Deschenes and I’m a member of Carlene’s Small Group. We are one of several groups at First Parish that meet monthly to discuss the important things in life like love, courage, and commitment. The rest of the group: Bill, Leslie, Sally, Frans, Gail and others who came before us are here in spirit and I share some of their thoughts today as well.

Our group meant a lot to Carlene because it embodied her belief that community and connection are the most important gifts a church can give to its members. We are all, not just our small group members, better connected because of her work to ensure that everyone felt heard and welcomed in this, her second home.

Carlene brought her skills as a facilitator to church gatherings whether it was our small group, the many church events where she ran the kitchen with absolute precision, retreats where we gathered to share our dreams for a better community, and of course with the high school youth group where her influence helped young people go into the world with an understanding of their faith but more importantly of their responsibility to make the world more loving and just for everyone.

Our small group discussions were not just discussions. She gently pushed us to both explore our beliefs and better articulate how we could live our values in a way that would make a difference.

She and I would often compare notes after a small group meeting. She always wanted to know what worked, what didn’t, and how to make the next meeting even better. She was always looking to improve our experience so that we could get the most out of our time together. It was never about Carlene. Ever.

Carlene planned fun trips for us each summer. We would often go to group member Ellen Mellen’s summer home in Gloucester for lunch and a chat on Ellen’s porch overlooking the Annisquam river. Carlene’s love of nature and the wonders of life were palpable. She was amazed at every breeze, every ripple of water, every bee that buzzed. She would sit on that porch for hours and just marvel at the unbelievable beauty of the earth. I know that somehow she and Ellen are sitting on that porch with our beloved Larry and Kirk who passed recently as well, facilitating a discussion about what they learned.

 We opened every meeting with a check-in. Given what was going on in our lives, this time could go longer than expected. But she always gave us the space to speak honestly and never once did anyone feel like they were not in a safe place to share. She spoke often of her children and grandchildren and, of course, the love or her life - Norman. Her love and pride would fill her up and spill over into our circle. The group feels that we know you all because of those moments and we ache for your loss.

She made everything look easy though we all knew that she struggled physically and we would have been happy if she wanted to rest instead of organizing us every month. But she felt that her work was not done. That as long as there were people she could help live a more meaningful existence, she would not rest. And that’s what made Carlene the shining light that she was.

She touched all of our lives as individuals as well. Holding us as we grieved our personal losses, encouraging us to get out of our comfort zones, challenging us to communicate our feelings in ways that were respectful to ourselves and to others.

Carlene gave me the greatest gift of my life. I was unable to have children which I rarely discussed but she knew it was a sadness that I carried. Many years ago, she encouraged me to get involved with the teens here at First Parish. I became a youth mentor and, after mentoring ME for a few years, she handed the reigns of the high school group over to me.

The relationships I have with many of those youth have filled a hole in my heart that nothing else could. Carlene knew that. She never used that as a reason for getting me involved, but she knew. She always knew.

We will all go forward with the lessons Carlene taught us. Our group will stay together and honor her at every meeting. We will take the wisdom she shared with us about inclusion, courage, and humor in the face of great adversity, and share them with the world. Her work here is not done. She has set the bar high for the foot soldiers she leaves behind but we will carry on with our leader’s example as our shield.

And miss her love and guidance. Always.

Chronic Illness and Empathy

This is a blog post I've been wanting to write for a while but haven't because I've feared that it will lead to pity - something I don't want from anyone, especially myself. Pity is demoralizing and tends to dehumanize as well, turning the pitied person into the embodiment of everything bad in life. No one deserves that kind of characterization.

But living with chronic, degenerative illnesses like I do every day is something a lot of people don't hear about and therefore don't understand. We become invisible to society because we would rather disappear under the bedsheets than be a burden to anyone. And that is a great disservice to society and humanity in general. We are all formed by our experiences - good and bad - and so ignoring the bad makes us less human. Americans tend to want to look strong and independent in order to be accepted and admired by others. It's a toxic societal trait that I want to change. And  therefore the reason for this post.

I became chronically ill 18+ years ago in my mid-forties when my life was seemingly at its best. My career was taking off, I was in good shape physically, I was passionate about the non-profits I was leading as a board member, I was traveling the world, and I was constantly out with friends having fun.

Doctors couldn't figure out why I became so exhausted all the time because every test they did was perfect. I was given the diagnosis of Chronic Fatigue Syndrome (CFS) and sent on my way. 

Skip to today. 

My life now is very different. I'm only able to work half-time at a job that is laughable compared to where I was in my career. The only travelling my husband and I do is by car. I rarely go out at night and when I do, I pay dearly for it. My volunteer work is very limited. I cannot even go for short walks never mind regain my gym routine.

I started seeing specialists in Boston who have developed tests to prove that those with CFS have diagnosable diseases. So I now have Dysautonomia and Small Fiber Polyneuropathy (SFPN) added to my medical chart. Both of these are mostly untreatable though I am on some off-label use meds that have helped in some areas.

My five-hour work days (Mon-Thu) start with my being awakened out of a dead sleep by my alarm at 8:15 am. It takes a while for me to get up and start the day because I get lightheaded and dizzy when I stand up. I drag myself through showering, dressing, and eating a small breakfast. The IBS kicks in as soon as I eat and I spend the rest of the day alternating between popping Tums and running to the bathroom. 

During the day, I break into massive sweating episodes, drag my legs around the office, struggle to write because my hands don't work correctly any more, and pop Aleve for the excrutiating, non-stop "coat hanger pain" that affects my neck, shoulders and upper back.

When I get home from work, I try to do little things like water my flowers in the summer, pay some bills, do laundry. Then I put on my pajamas and fall onto the couch in so much pain and so completely exhausted that I can't even think straight. If I've done my weekly grocery shopping that day, I have to lay down on the couch before I'm able to be upright again. And when I'm in a bad flare from overdoing things, I have stroke-like symptoms: I can't form words, my vision gets very blurry, and I am unable to process any information coming at me.

Dinner is usually something easy like a sandwich or a bowl of soup. After dinner, I'm back on the couch vaping medical marijuana which is the only thing I've found that helps the pain and the nausea, and also helps me sleep at night. I watch the news and surf social media to connect with what I feel is an ever-shrinking world for me.

The full-body pain at night is a level that defies description. But I'll try. My legs are the worst. They feel like tree trunks that are on fire while a logger is hacking away at the wood. Deep deep pain, muscle spasms, and stinging/burning nerve pain. It does improve quite a bit once the cannibas finally kicks in but not always. Until that time I have moments that the pain is so intense that I can't breathe.

I go to bed and sleep anywhere from 10-13 hours. Then my day starts again. I used to do more on my three days off but even meeting friends for lunch has become difficult now. I feel like I need to sleep/rest for three days in order to get through four days of part-time work.

No one sees just how bad I am except for my husband, my medical team when performing grueling tests, and my sister and her family who I sometimes spend weekends with.

When I'm with other people including at work, you would likely never know just how bad I am. I smile, I laugh, I tell jokes, I hustle around getting things done. Because like most people with illnesses like mine, I don't want my life defined by my disease. I love being with people. It makes me happy to feel like I've still got quality of life. So I pretend. And stuff it all down until I get home.

Saying "no" to things I always enjoyed doing is heartbreaking for me. Every year I say no to more and more things. Some are simple things like food I enjoyed that now makes me violently ill. I've already had to say no to the bigger things like my career that I miss more than anything else. So the simple things were all I had left. And even those are disappearing now.

My future is not bright. I expect to get worse and I anticipate a shorter life which makes me sad. I want to see my nieces and nephews grow up and get settled. I have young people in my life who I've mentored and have become family to me. I want to see what they do with their lives too and be a part of them somehow. 

I feel constant guilt about not being the partner I always expected to be for my husband. He has had to work longer than he wants so I can have the good health insurance I need. And he does so much for me that I am no longer able to do for myself. 

This is all I wanted to say, I guess, so that others will understand that not all of us are living the life you think we are based on how we interact in public. We don't want your sympathy or pity just your understanding and respect for the boundaries we need to put in place in order to get through the day.

If you can remember my story when you encounter someone who might need to keep conversations short, or cancel plans last minute, or is struggling to process something you've said, then this post is worth all the energy it took to write. 

Legacy Letter

I took a course at my church this year where we explored the aging process. At the end, we were asked to write a "legacy letter". Something to leave behind for others where we share our life lessons. I'm sure mine will grow as I continue to age (otherwise, what's the point of living), but here's my letter so far.

To whoever is interested:

I don’t claim to be an expert on anything, not even myself. But here are some lessons I’ve learned (in no particular order) as I traversed my time on Earth:

Honor and learn from your past, but don’t be controlled by it. If you made a mistake, welcome to the human experience. Only boring people don’t make mistakes. Embrace your mistakes but learn from them and keep moving forward being the best person you can every day.

Be kind. I wasn’t always kind. I was more interested in being right and keeping myself safe emotionally. It wasn’t always pretty but as I aged I realized that my kindness was not a weakness but a gift to others and myself.

Love science. You can be spiritual at the same time as you can be scientific. Facts are important and, though you may lead with your heart, you should always check in with the facts in your head first.

Put real facts in your head, not talking points from people who have selfish agendas. Do your own fact-finding and make an opinion as objective as you can.

You will meet people who will use you. You might not recognize it at first and feel the fool for being duped. That’s okay. It was more important that you gave someone the benefit of the doubt. Better to be mad at yourself for being misled than it is to go through life always expecting to be used as a pawn. 

Treasure friendship. It is one of life’s most beautiful gifts. Be vulnerable and let people see the real you. That is the only way to obtain any kind of intimacy in relationships. Anything else is built on fakery.

Make a difference in the lives of others. This includes both family and friends and strangers. People may never recognize or acknowledge your contribution because you did it so gracefully that they didn’t even realize it was you who improved their lives. And that’s okay.

Stretch yourself. No one ever did great things by staying in their comfort zone. Life is an adventure. Live it. I always picture myself in a wheelchair in a nursing home at the end of my life if I was faced with a challenge. Do I want to be spending my final years in regret about what I could have done had I not been afraid? What a horrible way to end a life.

Believe in yourself. Don’t let others define you. Those people get as much coffee for their three bucks at Starbucks as you do. 

Love without measure. Always tell people you love them whenever you see them. You just never know when it will be the last time.

Forgive those who did the best they could with what they had. Even if they broke your heart sometimes.

Be honest without being cruel. It’s a fine line when you’re mad at someone but learning to communicate respectfully in the midst of intense emotion is probably the greatest skill you can learn in life.

Don’t get old in spirit. Always listen to new music and engage with young people. Too many old folks think the young have nothing to teach them. We were all young once with our own lessons to share. Never disrespect that. In fact, embrace it.

See people through their hearts and their actions. You will never agree 100% with anyone. But if you can find common ground and connect there, you’ll be amazed how many wonderful friends you can make. And they will challenge your way of thinking which is always a gift to me. I have had my mind changed but only if approached with love and respect.

Read. No one ever had an intelligent, meaningful existence without reading with passion.

Trust your gut. You know when something isn’t right. Speak up when you’re with people who aren’t saying kind things. You will be judged by the company you keep and the silence that you kept. You won’t convince them to change their minds, but you must always lead with moral integrity.

People are people are people. We are more the same than we are different. Don’t look for differences, look for similarities. It will make you a more empathetic person.

Sing. Even if you can’t carry a tune. There is nothing more joyful than singing.

Put your hands to work. Go dig in the dirt and plant some flowers; paint a room; learn to do hand-crafts like knitting or quilting. You aren’t fully human if you live entirely in your own head.

Lead with curiosity and wonder. 

Don’t be afraid of death or growing older. It’s all part of life. There are always new things to be learned and joy to be had in every phase of your existence.

The Heart of the Matter

I've been sentimental-crying a lot since I turned 60 earlier this year. I'm not a crier by nature. I used to be when I was young and easily hurt. But I've had to toughen up to get through life's challenges and occasional loneliness, and crying became an anomaly for me.

Recently a friend told me I was an empath. I have heard the term for a few years but because I don't suffer fools gladly, I figured that didn't apply to me. I reread the definition recently and was surprised to be guilty as charged. 

My dad always told me that I was "too sensitive". I never agreed. I felt that I was just a kind person and that everyone who hurt me was too INsenstive. But as I did more work in therapy, I found that I could be both sensitive and strong. What a gift that was for me.

But it didn't fix all heartaches. I've had to keep working on that.

Recently I've been in contact with some old college friends who I haven't seen in close to 40 years. Thanks to social media, your past becomes your present in the time it takes to respond to a friend request on Facebook.

Besides being "too sensitive" as a youth I was also incredibly shy and had almost no self esteem. People who know me now as an outgoing, confident extrovert never believe me. But life in my teens and early twenties was very difficult for me. 

I went to college and met a large group of friends who loved me regardless of (or maybe because of) my emotional and social awkwardness. They saved me. They also raised me to a large extent. 

Looking at old college pictures (I always had my little Instamatic camera with me at parties) and sharing stories with some long-lost college pals in the past few weeks has been a huge gift for me.

When I've looked back at those years, they have mostly been filled with wonder. We were an outrageous gang of crazies. We partied like no others I knew, danced constantly to our favorite bands either at clubs or in our friend's apartment. I think if we hadn't had his apartment to go to, we would not have hung out as much together. We could be ourselves there and yearned for weekend nights just so we could all be together again.

If you're looking for a comparison, our group was like a combination of the characters from Friends and the "brat pack" of the 1980s with a touch of Animal House thrown in (hey, it was the late 1970s). 

We dated each other, broke up, and dated others in the group. There was rarely any jealousy. We were so tight that not much could ever tear us apart. Several of the couples ended up marrying and are still married today.

I've found out through new conversations with these long-lost pals that there was more going on than I was aware of. The guys in the group had a pact to protect the girls in the group - especially the innocent and sensitive ones like me. No one was allowed to make a move on us unless the guys in the pact thought the suitor passed the test. This was so touching to me and explained how I was able to stay safe through some pretty wild times. That was because the guys were always diligent.

This revelation brought me to tears. How sweet. How kind. 

It also made me realize that this crazy gang wasn't just about fun. I tend to over-romanticize events that are extremely important to me. So after almost 40 years, I thought that maybe this was another example and that everyone else in the group couldn't possibly have felt that our connection to each other was as magical as it was to me. I was wrong.

But, like I said, that time was not only special but also difficult for me. I fell deeply in love with someone during that time who, by simply living his own life and following his own destiny, broke my inexperienced heart. I had to walk away or I would never have been able to move on. This is when I stopped being a crier. 

I pushed through intense loneliness as my friends all got married and had kids. I went to their weddings and baby showers and smiled for them. On my own, I lived with constant heartache.

Meeting my husband at the age of 26 changed all that loneliness. Finally I had met someone who truly cared about me. Who would love me despite all of my failings and I would do the same for him. We have been happily married for 31 years.

While reconnecting with the old gang recently I started to remember the old heartache and unexpectedly feel it in a way that I hadn't in a long time. It was a hurt that never healed because it was too painful to revisit.

But now that all the stories and backstories are being told, I'm seeing my empath leanings in real time.

There isn't much in my life that I can't work through. And music and literature always help me. 

As I got in my car to drive to work this morning, I reached for an old CD. There was a song on it that was just what I needed to help me feel it all while singing through sentimental tears. I've played this song many times in my life. While going through therapy, having difficult conversations with my father, and peeling off bandaids that hide emotional wounds that refuse to heal. 

Forgiveness is the theme of the song but it wasn't until today that I felt that the forgiveness I needed was not something I need to give to others but to myself. 

And I need to re-grow a part of my heart that I cut off because it was too shattered for even me to live with. While listening to the song I realized it is finally time to get down to the heart of the matter. But I'm thinking about Forgiveness.

Don Henley's The Heart of the Matter (video link below)

https://www.youtube.com/watch?v=EMZDswCUcOY

A Tribute to Ellen Mellen

This is a tribute to a dear friend that I wrote and read at her memorial service. It was from all of us in her group and from the heart.

We are Ellen’s small group - a First Parish discussion group that has met once a month for about 10 years. Some of us have been in the group longer than others and there are some here who were with us in the past. We all treasured Ellen’s presence and participation.

Every group meeting starts with a check-in and we go around the circle to talk about what has happened in our lives since we met last. Ellen’s check-ins often included stories about her grandchildren and how amazed she was at their accomplishments. She was very very proud of them. When it got close to Spring, Ellen itched to get to the Gloucester house and her beloved porch where she could watch nature. 

Every month we choose a subject to discuss and, no matter what the topic, we all hung on to every word Ellen said. Sometimes she didn’t say much; she preferred to mostly listen and ponder. When she shared her thoughts she commanded our attention, simply and quietly, with her wisdom and thoughtfulness. 

As a group, we walked with her after Roy’s death. She described her time after Roy as one where she was walking on an unfamiliar and uneven path. She would have been okay, she said, if he had been there to steady her. But without him she felt like every step was treacherous. We were there for her during this time but she was also there for us by modeling a journey that some of us will have to walk ourselves someday. She taught us strength, and self-compassion, but most of all, grace.

Ellen hosted us at her Gloucester home every summer. We would bring our lunches and she would make us cookies for dessert. We would sit on the porch and she would tell us stories about her time there through the years. She would educate us on the changing tides, the birds, the gardens. This was her happy place and she loved sharing every bit of the experience with us. 

We are sad that we will never sit on that porch with our beloved friend again and feel the cool breeze on our faces. We will miss her stories and her kind heart. Her intellect and her warmth.

Ellen understood and accepted the ups and downs of her life just as she did the rising and falling of the tides on the Annisquam. Her love and awe of nature and its laws were something she knew applied to her as well. And probably why she treasured her life so very much.

We know the tides wait for no one but we will miss her as we walk that unfamiliar and uneven path without her to steady us.

Godspeed, dear friend.

The Weed Stigma

Today is 4/20. I didn't even realize it until I got to the marijuana dispensary in a nearby city. The physical price for recreational marijuana today was 45 minutes waiting in the rain. 

That wasn't my price though. I was waived to the front of the parking lot next to the entrance. Then ushered to the sparse line for the medical marijuana patients. I showed my medical ID card and my driver's license and was directed to the short line with my fellow patients.

There are comfy chairs there in our line. Along with several of us with canes. We suffer from lots of things: chronic back pain, nausea from cancer treatments, PTSD. I'm there for the pain caused by ME/CFS and Dysautonomia. 

I've been going to this particular dispensary for over a year. The people who work with us patients at this dispensary are helpful and empathetic. I often wonder if they go through sensitivity training before stepping behind that counter. They are so very kind.

The people in the recreational line laugh together. And stand. There are no comfy chairs for them. I wonder if they really understand what we deal with or if they think we are just lucky to not have the long wait. 

When I got my medical id card last year it was a last resort. The pain in my hands and back and especially my legs was past the point of Aleve and a heating pad. I had gotten to the point where I would recline with my feet up on the couch at night and just moan. Not every night, but most nights. The pain made it hard for me to fall asleep and stay asleep. And when you need 12ish hours of sleep each night just to feel a normal state of exhaustion, this was making the exhaustion level rise to a scary point. I still work part-time and needed that normal level of exhaustion in order to function.

When I got my card I hid that fact from all but close friends and family. I wouldn't talk about it at work except to a couple of close coworkers. When I applied for a job in another town, I expected to not get the job because I knew I would fail the drug test. And since weed is not legal federally, I read that the state-level legality wouldn't matter to most employers. 

Well, I did fail the drug test but I still got the job. I was honest and upfront and HR said that it wouldn't be a barrier to employment. 

So once I passed that hurdle I started thinking about how I need to not keep quiet about my marijuana use. If there is a stigma, I should be part of destigmatizing it and not hide from my marijuana use.

I could have gone on opioids. My doctor probably would have approved it. But I didn't want the addiction that came with it. I feared that some day a cure would be found and I'd be so hooked on oxycontin that it would be too late to matter.

Medical marijuana is more potent than recreational marijuana. Kind of like how a prescription anti-inflammatory is more powerful than an OTC one. It also comes in many different forms because a tincture might work for one person but edibles might work for another. The cannabis strains tend to be more varied as well.

I tried several types before settling on a THC/CBD mix vape oil. I only use it at night when I'm in my pjs. Driving under the influence of THC is not something I would do. 

The effects of the marijuana wears off in a matter of hours when I am sound asleep already. 

To say that I have no more nights of lying on the sofa moaning in pain would be a lie. I still have breakthrough pain and/or a really rough day where it takes more THC than I am willing to ingest to make it all go away. But even then, the THC at least soothes my nervous system so that I'm not freaking out about it.

It is a godsend to me and so many people that I meet in line. Some of us can work part-time because of it. Some of us can eat now because certain strains help with the nausea. Some of us can finally sleep after being in constant pain for years.  

And it's not addictive OR harmful to an adult's body including our brains. 

So if you are thinking that you could use medical marijuana for whatever ails you, it's easy to get.
    1) Get to a cannabis doctor and get your "prescription". They will get the process going with the state.  https://www.marijuanadoctors.com
      2) Follow the doctor's office instructions to register with the state.
    3) Once you receive your id, go to your local dispensary and talk to the lovely people there about your condition and your other meds and your concerns and they will help you find the right thing for you.
    4) If you find you are trying different types of strains or forms (edible, oil, leaf, etc.) because "nothing" is working, stay with it. I had to go through edibles and tinctures before I found something that worked. 
    5) Don't be afraid to try THC. When I started, I would only use CBD because I was afraid of the THC high which made me very paranoid when I tried weed in college. So the nice people at the dispensary talked me into trying a THC/CBD blend as vape oil and it is what saved me. 
    6) CBD is not a miracle drug for everyone. I keep reading on my support groups that people have been disappointed with CBD once they finally spent a fortune and tried it. I tell them not to be afraid of the THC. It's all about whatever works.

It costs money to see the doctor ($200/yr in Massachusetts), the state id card ($50/yr in MA), and the vape oil I use ($50/month). I feel very lucky to be able to afford it since (again, it's not federally approved) it is not covered by health insurance. 

The big drug companies should be worried if people like me are getting this kind of benefit out of a drug that is not addictive, is all-natural, has no side effects, and actually works. It is probably a big reason why it is not federally approved yet. 

I think of all the bodies, and families, and careers that have been destroyed by prescription painkillers and alcohol (which is socially acceptable and readily available). And then I look at how few lives are adversely affected by marijuana. It makes no sense to me that marijuana is not legal. It is not a gateway drug. I know people who work with the addicted and no one goes to heroin because they started smoking weed. 

There should be no shame in using marijuana for any reason. But especially if you are a medical user. I only hope that the stigma dissolves over generations. 

• For information on cannabis strains and finding a dispensary visit Leafly at https://www.leafly.com

• For information on ME/CFS visit Solve ME/CFS Initiative at https://solvecfs.org

• For information on Dysautonomia visit Dystautonomia International at http://www.dysautonomiainternational.org