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.