See My Humanity, Not Just My Illness

I was talking with a few ministers about social media, such as Facebook, at General Assembly (GA) 2011 yesterday. One minister said they did not want a church Facebook page where people can post to it because "there are a lot of people in our area with bipolar and I don't want them posting things that will cause problems."


This is not the first time I have heard a comment like this in professional and social settings. In fact, I hear such comments about people with bipolar disorder at least once every few months. They show the enormous stigma against mental illness, particularly bipolar.

I spent all week at GA listening to the stories of our last 50 years since the Unitarians and Universalists joined together so that this faith could be a source of justice in this world. How we were heavily involved in the Civil Rights movement; we protested this week to show support for the gay, lesbian, bisexual and transgendered community; and we have inclusivity ministries. We stand on the side of love and want no one to be discriminated against based on belief, age, race, ability, social class, or sexual orientation. And yet when I mention that this stigma against people with mental illness is unkind and not in line with our faith, many people think I am crazy (and in their minds, technically, I am).

I have sat through chaplaincy trainings focused on how the brain of a bipolar person is unstable and therefor they can not be trusted to be telling the truth or be able to make decisions. I have had people tell me not to let anyone know of my illness because it will affect my career.

I know there are many injustices in our world, and I am just speaking about this one today. What I have found in my experience though is that this injustice is one we do not talk about. Many people do not want to advocate for people with mental illness because they think it will reflect badly on them. No one wants to be associated with "craziness."

Because of this stigma, people with mental illness often don't ask for help, their families are secluded and hurting, their children have no one to talk to, and their illness often progresses.

I never know what to say when people make these judgmental comments about those with mental illness. How do I respectfully tell them how hurtful and degrading it is to know they assume people like me are irresponsible, a risk to society, and not able to contribute to this world just because we have an illness? How do I tell a fellow colleague that Unitarian Universalism is a healing faith for people with mental illness and judgements like this decrease the ministry they can do?

What I wish is that people actually sat down and listened to the stories of people with mental illness instead of just focusing on the symptoms. True, this is a devastating illness that hurts not only the person with bipolar, but also people around them. However, I am able to have a meaningful life because my husband and my home Unitarian Universalist church happened to be people who saw my humanity and said they would help me. They held me accountable and showed they believed in me. They never let me give up on myself and they keep an eye on how I am doing to help me tweak my treatment as necessary.

I feel mental illness is a physical and spiritual illness. The stigma from society, and the internal doubt and questioning this illness brings to a person means they need not only medical support, but spiritual as well in order to manage their illness.

No matter what faith we are, religious or not, we can help end this stigma and allow people with mental illness to be productive members of society when we actually see them as human beings.

Blessings,

Rev. Katie

Lessons Learned from Friends

Sometimes I wonder if my family and I would have moved in with Mom and Dad to help out had we not met some wonderful friends during seminary.

During my seminary time at Meadville Lombard Theological School, our many friends graciously helped us take care of our son. In our first few days there, we accidentally parked in a tow zone, as we were not used to street parking, and our car was towed. Our new neighbors Michael & Cara took Jeffrey in, gave him dinner and got him to bed on time while we drove all over trying to find the tow lot and get our car back.

I had never experienced community like that before. Voluntary care for other people.

This week, we are in North Carolina for the Unitarian Universalist Association General Assembly (GA) 2011. It is the annual week long conference for our denomination. Jeff and I are both involved in church life, so for us to be able to attend GA, we need someone to care for our son because he can't stay back home with anyone.

Our friends, Rev. David Pyle and his wife Sandy, lived in the apartment above ours in seminary. Since that time, they have always helped us through their friendship, advice, and care for Jeffrey. At GA Sandy spends all week with Jeffrey while Jeff and I attend GA, often from 9am to 12am each day.

Sandy helps us in this way out of the pure love of her heart. She knows what community means and that we can't raise our son on our own; sometimes we all need help. Jeffrey loves his time with Sandy, "because she is just fun," he says. They read books, play games, swim, and make things out of Duct Tape like a race car and track.

I do not think there are words to express what her care for Jeffrey means to us. It is hard to describe how transformative it is to have another person, of their own choice, help you so you can follow your call in life. So you can be happy and whole.

It is that example, of true community, which led Jeff and I to live with Mom and Dad. We could have just moved close by, but we saw how such an extreme act of caregiving can change lives for the better. People can choose to help one another in radical ways.

Jeffrey feels respected and loved when Sandy takes care of him because she does it voluntarily. It is a big deal for a child to have an adult who just likes to spend time with them, seeing their inherent worth and dignity. Too often, adults care for kids out of a sense of requirement.

One could say my family and I are living with my parents out of a sense of requirement, as often happens with children and parents. But that is not so. We chose this because we love them, and also because we learned that taking care of others spreads joy and is a great way to spend your life. We wanted to continue the gift that has been so graciously given to us by our friends.

Our American society often does not encourage us to help one another. People continually ask why my husband, who is "just an in-law" would help my parents.

Our friends have shown us that family is what you make it, it is not weird to help others, and it is not a sign of weakness to need help.

Thank you to all our friends who showed us a different way of life.

May we all find friends and family who care for us, and may we pass that gift of caring on to others.

Blessings,

Rev. Katie

Tribute to Two Fathers

Charlie (my dad)

My dad is one of the most interesting and inspiring people I know. He has changed so much over the years that I almost grew up with two different fathers.

When I was little, our nickname for him was "Grumpy" after the dwarf in Snow White. He was conservative and strict. I always saw him like a big teddy bear though, with a softness in the middle of his rough exterior.

Over the years, many tough life circumstances have changed him. Well, not so much changed him, but have let that soft interior be what he shows to the world now.

If anything, Dad has taught me to change with the tide. Nothing is permanent, and we can adapt to what is happening, if we can let go of trying to control and fix everything.

He also taught me to love and care for my family, and that he loves my Mom more than anything. He always attributes his success in life to my Mom who is brilliant, intelligent, and supported him.

I attribute his success also to his ability to change his opinion as he learns more about the world, and his deep spiritual grounding in a belief that change is part of life, and life is good.

I look up to Dad, so it is no surprise that I married someone so much like my father that they even have the same birthday.

Jeff (my husband)

My husband is just as calm and grounded as my Dad. He also fiercely loves his family and had a rough exterior when I first met him.

Jeff is an amazing father, always there for our son and he has an immense amount of patience. He never withholds emotion from Jeffrey so he always knows he is loved. He respects Jeffrey and wants him to be none other then himself.

Jeff loves life and easily adapts to change. He is the smartest person I know and always loves to share his knowledge with others so they can succeed.

Charlie & Jeff

In a sermon for Father's Day yesterday, the speaker mentioned a quote that said the best gift a father can give to his children is to love their mother. My Dad had never heard this quote before, but he sure lived out that gift. I never remember a time when Dad was not telling me how much he loves Mom. Now, as her caregiver, he says his greatest honor in life is to care for Mom. I see every day how much he loves her in how he dresses her, laughs with her, and always advocates for her.

Jeff is the same way. He too gives our son the gift of loving me, no matter what. It is no easy, fun, or pleasant thing to take care of a wife with bipolar disorder, but he has worked for many years to be more understanding and caring.

Jeff and Dad are the main caregivers in our home, and are the best role models for my son Jeffrey. Every day Jeffrey sees two strong, caring, loving men take care of their families with joy, yet also stay true to who they are as individuals. That is a difficult balancing act.

Thank you Dad and Jeff for being the best role model and friend I have as a daughter and wife, and our son has as a son and grandson.

How Many People Does It Take?

My sister, Dad, Mom, Jeff and me

How many people does it take to care for a person with dementia?

For just three days this weekend, in order for all of us to be able to do the things we need to do (work, attend church functions, celebrate an anniversary, take a class on dementia, and do a bike tour) we need six adults and one child. True, this is a far busier weekend than most, but now that Mom can not stay at home alone anymore, it is very hard to work out our schedules.

My sister has given us the wonderful gift of spending time with Mom three days in a row while Dad goes out of town to learn about how to better communicate with people with dementia, Jeff and I celebrate our 11th anniversary and attend a few church events, and Jeff, Dad, Jeffrey and I to go on a bike tour we have been looking forward to for months. My sister is so amazing!

Two of my son’s friends are having him over for a playdate while I attend a work meeting one day and Jeff and I go to a musical for our anniversary.

I didn’t realize how hard this was going to be, not being able to leave Mom home alone. We can not run up to the store anymore, or leave my son and Mom home together for a bit to attend a short meeting. Today I was home, but upstairs working, and ten minutes after the boys left on an errand, Mom was opening up the doors to the house looking for them. Even having me in a different room was too confusing for her.

They say it takes a village to raise a child, but it takes a village to take care of us all.

Thank you to everyone in my village!

Blessings,

Rev. Katie

Never Enough Time

For the past year I have been planning to record the story of Mom’s life. I want to take out old photos and have her tell me the stories behind them. I want to know what some of her favorite memories are; favorite (or not so favorite) vacations. I fear I have waited too long.

In the past few weeks, maybe month, it seems that Mom’s dementia is progressing very quickly. Often I can’t understand what she is saying and she starts thoughts only to stop in the middle of them and stare out the window. When I ask her to continue what she was saying, she does not remember that she was talking. She is remembering less and less every day.

The other day I asked her what her favorite vacation with her brothers was. She said she remembers having fun, but does not remember the specific vacations. If I ask her about Germany specifically, she says she liked it. I asked her about vacations with the kids and she can only recall those memories if I remind her of the story such as “What about the time that donkey scared one of the boys?” Then she can tell me a bit about that memory.

I have always grown up with the sense that there is never enough time. We have had many illnesses in my family and because of that I have always had a fear of losing my loved ones. I used to call my Mom from school if I thought I had forgotten to say “I love you” to her when I left in the morning, just to make sure that was the last thing I said to her in case something bad happened and that was the last time I saw her. For some reason though, this quick deterioration snuck up on me.

Whether or not you have a loved one with dementia, try to record some of the stories of your loved ones lives, and your own life. These are the things that people will hold on to and they help create a sense of identity and belonging to the younger generation. 

Four years ago I could not find a book to read to my son at bedtime, so I told him a story from my husbands childhood instead. Ever since then, our son has asked us “Tell me a story about when you were little.” This is so important to him. He looks for the similarities in these stories between us and him. He likes to comment “I must have gotten that from you.” For instance, we were just talking about the amusement park Cedar Point which he and his dad have already gone to twice this season. My Mom loves roller coasters as well and she was talking to him about some of the rides at Cedar Point. He knows he gets his love of coasters from his grandma and his father.

Time goes by too fast, so record what you can, spend time with those you love. I worry that one day I will wake up and Mom won’t know who I am. I can’t wait any longer to record all the things her grandchildren will want to know about her.

Blessings,

Rev. Katie

Coming Together for Alzheimer’s: Fat Little 5K

I always find it so inspiring when I hear about what someone is doing to try and help people living with Alzheimer’s Disease. Often these ideas come about over casual conversation with friends and family, and The Fat Little 5K is just such an idea.

Last year, Fat Little Buddies Tavern owner Joe O’Malley happened to be talking to a friend, Maureen Loesch. Joe’s father has Alzheimer’s and so does Maureen’s mother-in-law. They wanted to do something to help their loved ones and since Maureen is an avid runner, they came up with the idea for the bar to host a 5K race and donate the proceeds to the Alzheimer’s Association.

The first year of any race can be a bit stressful. You are never sure how many people will come to the race and how the logistics of actual race will work out-from advertising, registration, to post race goodie bags and events. However, last years first annual Fat Little 5K brought 250 runners and raised about $6,000!

What I love about this race is that it is truly community friendly, which you do not always find at events like this. Runners, young children, older adults, and people with dementia can all participate in some way. There is a 1 mile walk, a 5K run, tons of kids games (such as a bounce houses), food, and indoor seating in the bar where you can watch the after race events. Everyone is welcome at the race. This means we can create a truly inclusive community. Those who like to run for a good cause, caregivers, family, friends, and people with dementia.

Events like these show Mom and others with dementia and Alzheimer’s that the larger community does care about them. Not everyone who runs this race will know someone with dementia, but their participation is so valuable because it shows they care about the millions of people in our country who are affected by the disease, and they want to help.

This year, Joe hopes to get at least 700 people registered for the race. Our family will be there and we hope to see you there too!

Here is a link to the registration: Fat Little 5K Registration. Register online or show up and register on race day!

If you can’t come or don’t live in the Cleveland area, you can make a donation here: Fat Little 5K Donation Page.

Blessings,

Rev. Katie