Friday, June 23, 2017

Killing Me


I usually don't post about political things, but reading about the proposed healthcare bill that would replace "Obamacare" terrifies me. Should our current healthcare system be replaced by this atrocity, it could kill me. And others. Literally.

The majority of people on Medicaid are disabled, elderly, mentally ill, and children. I've read a lot in the past couple days about any cut in funding putting these people at risk. At risk of what, they don't usually spell out, so I'll do it for you. It puts elderly people, children, mentally ill people, the otherwise uninsured, and disabled people at risk of getting more ill. At risk of dying. 

Should I lose my Medicaid, I would not be able to afford health insurance. It would mean going off of the medications that I take that keep me functional, because I wouldn't be able to afford them. If I go off of these medications, I will no longer be able to walk. My joints would deteriorate to a greater extent, and quickly. It would be difficult for me to get out of bed. My autoimmune liver disease, which is at bay thanks to these medications, would rear its ugly head and could eventually necessitate a liver transplant, which I would also not be able to afford.

Losing Medicaid could kill me, slowly and painfully. 

For those of us who could possibly lose health coverage, the results could be devastating.  We could be refused treatment due to the regulation of which medications we're "allowed" to take or a cap on the cost of medications covered. Or the state could decide that insurance companies are no longer required to provide health insurance to those with pre-existing conditions, as that decision would be left to each state to decide, if I'm understanding correctly. 

I didn't choose to have a particularly aggressive case of psoriatic arthritis, ankylosing spondylitis, autoimmune liver disease, Hashimotos thyroidosis, celiac, OCD ... am I missing any? I planned on going back to work. Instead, I struggle every day to get out of bed and to keep moving, even with treatment. I give back through volunteer work, which would also become impossible should I go off of treatment for my illnesses. 

Disabled people do not choose to be disabled, nor do people with Alzheimer's or dementia or clinical depression or bipolar disorder choose how their brains work, nor do those children born into poverty choose to not be able to afford health care. Many people are one health crisis away from needing assistance themselves. 

The solution to this health care situation will not come about through the current administration's plans. It will, in fact, be made worse for the most vulnerable among us. 


Sunday, June 18, 2017

How Old?

Sometimes birthdays catch me off guard.

Yes, I knew Haley's birthday was coming up - that it's today. We got her a gift and planned a (albeit joint birthday / graduation / Father's Day) celebration. What I failed to do was wrap my brain around the fact that Haley is fifteen today. 15. One year away from sixteen. How the heck did that happen? How is my third child that old???

Looking back over the past year, I came to the realization that most of the highlights of Haley's year have involved performing in some way shape or form...

In Androcles and the Lion at Camp Calumet Drama Camp:


In Epoch Arts' Mini Production, Collide, in which she got to create her own character and write her own part:


In Haunted House (at Epoch Arts, of course!):


And made leaps and bounds in creating SFX make-up gore:


 In Epoch Arts' Arts Response: Responding to Hate with Love in which she sang "Losing" by Tenth Avenue North and in Dinner Show, in which she sang "Light in the Hallway" by Pentatonix and did a Jabberwocky skit.


She did have fun with friends at Lake Compounce, Mystic Aquarium (what an adventure the first time we attempted to go!), and other places: 


And most recently she played Finn, Seeker of the Snagglelump, Tooter of the Trumpet, Tamer of Deegan, Clanger of the Cymbals...in Epoch Arts' Mainstage Production, Unfinished People:


Haley amazes me every day with her ability to overcome joint pain and exhaustion in order to accomplish all that she does. Her bold creative spirit inspire me every day to overcome my own insecurities, step out of my comfort zone, and do crazy things like use the sewing machine. One of the things that I admire about her most is that she is fearless in her endeavors and jumps in with both feet - whether it's performing, crafting, special effects make-up, or cooking amazing things from scratch, without a recipe, and with whatever happens to be in the fridge at the time.

Happy 15th Birthday, Haley!!! May you always remember that the Snagglelump is always with you and to stay connected to something bigger. I love you! 







Wednesday, June 14, 2017

Beautiful Things


In celebration of Pastor Wayne Gollenberg, on his retirement....

Endings are emotional and difficult ... and exciting, as they are also beginnings.

As you begin this next exciting time of your life, I find myself having difficulty expressing the appropriate amount of gratitude for your presence in and impact on my life over these past fifteen or so years. What is stunningly clear to me is that you have been the vehicle through which God has done many beautiful things, not only in my life, but in others' lives and in our Church (a people, not a steeple).

Many people may see your retirement- your leaving our congregation - as painful, a loss. We will all miss you and all you do for the Body of Christ. It seems to me, though, that some are missing the fact that in many ways you will remain a part of all of us, and a part of our Church, always.

Over the years, you have time and again preached just the sermon I needed to hear at particularly low or stressful times. Consumed with worry over overwhelming financial, health, and personal struggles, I found myself getting my young children up and ready for worship one Sunday morning when I'd have rather just stayed in bed, in misery. I cried the entire drive and barely pulled myself together and into the fellowship hall for worship. As the words of your sermon washed over me, so did peace and an understanding of just how much God's love was continuing to work in my life, even through times of trial. That was the first time I fathomed the depth of God's grace and the words, "don't worry, God is with you." It was truly life changing for me.

Thank you for Tuesday Night Sunday School, which is the reason my family started regularly attending worship. And for inviting parents to Confirmation class, as I needed it as much as my children did. The vast amount I've learned through both ministries has come into sharp relief as I navigate my way through the School of Lay Ministry. Thank you for being such an involved, in tune, and inspirational teacher.

Somewhere along the way I found your suggestion of "wouldn't it be great if we had an interpretive movement performance of It's About the Cross after the pageant" had somehow turned into me heading up the Interpretive Movement Ministry at OSLC (which still needs a shorter name!). Not that I mind, as it's a wonderful "I get to" in my life.

Thank you, Pastor G, for you...and for doing so many beautiful things during your ministry at Our Savior Lutheran Church. We will miss you immensely, but the beauty of your works and your words will remain with us and in us.

Tuesday, June 13, 2017

The Cost of Living


I could minimize the pain I experience, the exhaustion, the migraines, and the overall ill feeling that clings to my being. I could choose to avoid doing things that wrack my body with pain and necessitate days of recovery time afterwards. I could merely exist.

I choose to live. I choose to pay the quite high cost of living in this body. I choose to pay the price of pain, nausea, fatigue, even pain-induced panic attacks in order to live life to the fullest.

Every day I weigh the cost of doing anything from mundane tasks to fully investing myself in a day full of theatrical rehearsals, the care and keeping of a horde of teenagers, and doing daily mom things. At times, a trip to the grocery store necessitates rest for the remainder of the day. Other times, I can keep going all day ... or for a few days ... and then spend two or three days, sometimes a week, paying back the debt of energy and body use.

The wrench in the works is that I never know how much I have in my being-a-functional-person bank each day. Some days I start out feeling like I can do everything on my to do list and then some, only to find that halfway through my second errand that I'm about to pass out from fatigue or pain. Other days I feel like my stores are beyond depleted, yet rally toward the end of a day of relative rest.

The constant uncertainty makes every day an adventure, although most days, not the adventure I'd otherwise choose.

Not long ago, tech week for Unfinished People - an original play in which two of my children acted and for which I did costuming, made props, and various other things - engulfed my life. We had rehearsals daily for a week, followed by three performances. The same week, I spent at last fifteen hours working on a book of remembrance for my pastor, who retired on the day of the last Unfinished People performance, as well as leading an Interpretive Movement Ministry performance, needle felting twenty caterpillars for cast gifts, and trying to balance daily living, five children, running a household, and getting enough rest so my body wouldn't shut down.

Things were going ok until Thursday, when I had a migraine that nearly caused me to cancel all plans for the day. Thankfully some ibuprofen, caffeine, packing my head in ice, and taking a nap helped me on my way. An increase in medications that keep me moving made the rest of the week and the weekend possible. 

And then there was this past week. I was barely able to get out of bed for three days. The first day, I didn't get out of my pajamas. I managed a trip to the grocery store the next day, a trip to the thrift store another, and another couple errands day four. I still haven't made it back to relative normal, but should in a day or two. 

This is the price I pay for doing what I love. And that's ok. Along with scheduling doing things I love, I schedule time to recuperate from said things. This is my life, and I choose to live it, not just go through the motions, even if the cost of living is high. 

Friday, May 26, 2017

Wake Up


We were to learn of sermons and scripture, preaching and purpose, and use our imaginations in the process. As we entered the first session of our School of Lay Ministry retreat, I was excited about the theme of the weekend, "Opening the Word, playing with Midrash." 

As we, led by Pastor Elaine Hewes, explored the sculpting of a sermon, I realized just the impact a current sermon has been having on my life. Current, not recent. I'll get to that later.

Pastor Elaine spoke of asking questions about what God is being and doing in the text, and answering those questions in a way that leads people to a place where they feel they should respond. She encouraged the sharing of personal stories of struggle that might speak to the text, or perhaps juxtaposing two unlike things to carry the message across. She spoke of journeying through the week with the text, waking up to the things, people, songs, interactions, and such in your life that speak to the text and to your heart and bringing some of these into the sermon. And much more than I can sum up in a simple paragraph. 

As Pastor Elaine spoke, I had a revelation. This is what a friend of mine does when she writes a play. Or speaks to teens about tough stuff. Or encourages friends. She wakes people up. She draws on her life struggles, images that inspire her or shake her up, things around her that catch her imagination, and instills them into the essence of the plays that she writes or passionate words she speaks. Her plays are one big sermon. They talk about the tough stuff in a way that inspires the audience to at least think, if not act in response to the issues presented in the play. To act, not out of guilt or obligation, but out of a pull from your inner moral compass after experiencing the performance. 


The sermon that is Beautiful Things, last year's original play by Elizabeth Namen at Epoch Arts, continues to speak to me and change me to this day. Unfinished People, the play currently being rehearsed for its June 2, 3, and 4 performances, is doing the same. Community, distraction, addiction ... meat ants and caterpillars ... the Snagglelump ... the poetry, severity, hilarity, and motivation of her words call me to wake up and take notice. 

Distractions and separateness rule our lives, blinding us to mystery, to community, to love, to the beauty in the juxtaposition of seemingly unrelated things. We need to wake up, look up, stay connected to something bigger. 




Thursday, May 18, 2017

Muchness


My life has been filled with Muchness lately.

Much pain.
Much stress. 
Much joy.
Much celebration.

Communication issues with my rheumatology office led to a week and a half delay for an injection of one of the two medications I need to manage my psoriatic arthritis. This caused a decrease in energy and increase in pain and inflammation...just when I needed energy and (relatively) easy use of my body for theater rehearsals, Spring Cleaning Weekend at Camp Calumet, and getting my house in order in preparation for the arrival of house guests.

Issues with my van leading to necessary repairs of nearly a thousand dollars combined with several other unexpected expenses have us in a financial bind, eased greatly by generous family members. Even so, we have gone from saving up money for a nice two weeks at Camp Calumet this Summer to wondering if we'll have the gas money to get there.

The muchness of pain and stress is balanced by muchness in our joy and celebration. 

Exciting things are happening in our lives. The original mainstage production of Unfinished People in which two of my teens and I are involved is going amazingly well. It is incredibly inspirational working with this group of twenty teens, along with the Epoch Arts staff and volunteers on this production. The Dinner Show they put on exceeded expectations in both talent and hilarity.  And we got to spend time at Camp Calumet along with over one hundred other volunteers to help clean up Camp and get it ready for Summer Camp. A family visit for Mother's Day weekend provided much needed rest, fun, and connection with two amazing mothers who we get to call Gram and Grammy. 



And I get to go back to Calumet this weekend for a School of Lay Ministry retreat. And we got to see our friend Bailey perform magnificently in a production of Bye Bye Birdie.  And we're planning for 16 full days at Camp Calumet this Summer, which will be absolutely wonderful even if we don't have the money for daily breakfast in the Conference Center or a few day trips as we had planned...simply because you can't have a bad time at Calumet! 

There is so much to celebrate in our lives and the lives of loved ones as well. Khalid and Reem, the Muslim refugee family we work with through New Start Ministry, got married in a civil ceremony performed by a Christian pastor in a synagogue. How glorious is that? And my sister's younger child got their name officially changed. And we will be celebrating the homeschool graduation of our oldest child next month.


In thinking about all the struggles I have in my life due to my illnesses and limitations, I can't help to concentrate not on the pain and stress, but on the abundant blessings God provides in our lives. The muchness of joy in our lives far surpasses the muchness of pain. 

Saturday, April 1, 2017

Giving Up and Giving In



I've had a two week long allergy attack and a week before that started a two week migraine. I do my best each day to act ok for as long as I can until suddenly I can't and am completely, utterly miserable. 

In order to get through my days, I've found that I need to conserve energy. In the process, I've found myself giving up a lot of things.

I've given up leaving the house on time (for my OCD self, that's twenty minutes early). I've given up caring about traffic, weather conditions, or whether or not we'll arrive at our destination at the time I perceive I need to arrive there. In addition, I've let go of my need to get the puppets I'm building for St. Paul Puppet Academy completed before rehearsal, as it's completely unrealistic with how busy I've been and how lousy I've been feeling.

I've given in to the comfort of my favorite chair at Epoch and my own bed, as well as to enjoying time with my community and my family without worrying about how much time things are taking or my to-do list. I've given in to my body's need for rest and medication. 

In giving up and giving in, I've discovered that the time it takes to get places seems shorter when you're not stressing and rediscovered over and over again the importance of being in the moment, especially with those you care about. I've experienced more joy amidst my misery than I do when I'm constantly stressed about going and being and doing. 

And I got to hold a chinchilla.


Because of the need to give up and give in, I completely enjoyed watching the looks on children's faces as they got to touch and sometimes hold cuddly and not-so-cuddly creatures during a visit to our homeschool co-op by Critter Caravan. If I was feeling better, I may have worried more about making sure classrooms were properly cleaned, heat turned down, and the like rather than taking a seat and experiencing a wonderful program through the eyes of a curious group of students. I would have missed out on squeals of both delight and uncertainty as we all got to learn about chinchillas, bearded dragons, hissing cockroaches, chicks, bunnies, snakes, hedgehogs, and guinea pigs.

It seems that feeling under the weather can come with its blessings. 

Wednesday, March 29, 2017

Celebration Vacation



It wasn't so much of a vacation as forty-eight hour stay and fifteen hours of travel between 3pm Friday and 6am Monday. 




We got to take part in a wonderful 90th birthday celebration in Pennsylvania for Grandma Jean, my husband's paternal grandmother. We got to visit with grandparents, cousins, aunts, and uncles who we rarely get to see and spend a glorious 74 degree day playing outside in the morning and celebrating in the evening.


We learned some family history, played games, explored a cemetery, took a drive to the top of a mountain, and listened with interest as Grandma Jean told us about growing up in Pavia, PA, without running water or electricity - a small village that now has those things, but is devoid of cell phone reception. 



My husband took two days off for this trip, which normally would have me stressing over how much time off he has left between sick days he's taken already this year and our upcoming time at Camp Calumet for both Spring Cleaning weekend and over two weeks at Family Camp. But I'm letting go of anxiety over how much time off he'll have and we'll make things work later in the year, even if it boils down to him taking a day or two off from work without pay for our Thanksgiving trip to PA to visit family. I'm making room for invaluable time spent with family by living in the moment and having faith that all will work out in the future. 


Thursday, March 23, 2017

Apparently



One of the things I've let go of this Lent in order to make room for faith and family is time online. Apparently so, since this blog has been quite sparse this Lent. 

I've learned something quite interesting - it's increasingly difficult to keep up with friends and family members when I'm not on social media so much! I miss day after day of Facebook updates because I'm choosing to devote my time to real-life interactions with friends and family. People these days seem to send out life updates to the masses instead of communicating individually with others. I do as well, and it wasn't so apparent until recently.

I thought I might catch up on social media today if I found the time, but have decided that, if there's something of utmost importance, someone will let me know. Right? There is no way I can catch up with everyone's past week without devoting an entire day to the process. 

Another thing I've noticed is that apparently I have help in keeping relatively up to date on the world through social media. One friend keeps me current with oil pipeline and Native American happenings; another with healthcare and yet another with education; one sends me links to local happenings and a few post regular updates on presidential actions from differing points of view. In that way, keeping up with social media serves me well. 

I suppose what I need to do is find a balance - some time on social media to stay current on the lives of loved ones and world happenings, and some time devoted to other pursuits. Instead of checking for updates many times a day or not at all, perhaps I can take time to put my feet up a couple times a day to relax and take it all in...both what's going on online, and what's going on in my own household. 

Wednesday, March 15, 2017

Storm Prep


We live in New England, where a blizzard dumped a foot and a half of snow and provided a nice opportunity for our family to spend time together ... cleaning. 

Ok, so we didn't spend the entire time cleaning, but I did take the opportunity over the past few days to get a bunch of cleaning done around the house, just in case we lost power...and because it needed to be done. Somehow our youngest children were more willing to do some major cleaning and decluttering in the name of storm prep.

We cleaned up the dining room/kitchen (one big room) just in case we needed to close the upstairs bedrooms and set up air mattresses on the first floor, where we would do our best to provide light and some heat in the case of a power outage. In the process, stray children's items made it back to their rooms, craft supplies were put in their proper place, and the surface of the table appeared. Donations were organized and homeschool bins from last session's co-op classes were updated for Spring session's class.

Two children somehow produced two garbage bags of clothing that they had outgrown or didn't need in the process of cleaning up their room.  

We took a break to watch Fantastic Beasts and Where to Find Them while feasting on chili and homemade guacamole. Well, six of the seven of us watched. I may have fallen asleep partway through. 

We also did fun things like play on the computer, begin construction of a blacklight puppet prototype, and Alia had a blast playing in the snow while others shoveled.  

The cleaning that we accomplished cleared the way for family time and fun projects that have been put off for weeks.