Hi there, Grief here.

Dear Human,

This is your grief. 
I know I'm not always this forthcoming but I’m writing to say I’m here to stick around for a bit, maybe forever in some degree.
I’ll try not to inconvenience your daily life too much but I do need to be heard sometimes. 
Especially on holidays or anniversaries of certain dates. 
You may need to sit with me for awhile and cry. 
You may need to talk about me. 
You may need to just sit in silence or write or whisper questions out into thin air.
Anyway you would like to approach me is perfectly ok; 
Just please don’t ignore me or avoid me for too long, you can try to
numb me but I will still be there. 
I can’t help it, but I am persistent and I need to be acknowledged if
even just a little nod in my direction. 
If you don’t, I might start to get unruly like a little child, please don’t make me beg for your attention.
You have walked through something difficult, some event (likely more than one) that impacted your entire being and that is why I am here.
I am part of your experience as a human and I visit everyone at some
juncture in their life. You know, all the greats have befriended me! Even used me to heal and help others.
Please know that even though I hurt you at times we truly can be
friends if you give me the attention I need. 
I won’t always feel so sharp and overwhelming I promise.
We are going to get through this together.

Sincerely and Unapologetically,
Your Grief 

(This post was inspired by a writing prompt shared by writing coach Allison Fallon through her Monday Motivation emails, if you have ever wanted to write but don't know where to start or would like inspiration on how to use writing to heal I highly suggest subscribing!)

The Gift You Never Wanted

My body is bone tired, but it's a good, cleansing sort of exhaustion. I spent last weekend camping on a lush green, secluded swath of land with 1800 other women, playing, singing, soul searching, and shedding all normal. You see, my normal will not let me be so free of distraction, so uninhibited to put down my cynical guard or my bitter burdens. In this place, surrounded by so many strangers that felt like sisters, things were different.

I listened to a woman speak and tell her story, a story so different than mine, but in many ways the same. She spoke of how she was sexually abused by a neighbor as a child. Right before coming to camp she stopped to get breakfast and in front of her in line was the neighbor's adult grandson. There he was, a glaring attack on her peace as she was on her way to share her story with hundreds of women. I imagine she had a moment of pause, her heart suddenly flooded with old yet vivid emotions. Anyone familiar with trauma knows, this is how it works, certain places, people, words, even smells can trigger the feeling of your heart stopping, tripping over the next beat. These tripwires can send you spiraling into a bad place if they aren't kept in check. Something within her happened though, to where she was able to reorient her perspective, she was able to hold her ground and think, "I choose to see this as a gift." Instead of letting this be a reminder of her painful past and let it upset her purpose, she shifted her perspective  and noticed instead how far she had come in her healing journey. She slowed her breathing and thought, “I can stand in line with this man, I am healed and whole.” Instead of only seeing him as a reminder of her own trauma, she began to see him as human and wondered with sympathy if he was affected by his grandfathers actions or his reputation. This encounter would have once stopped her dead in her tracks sending her into full crisi mode, but she she ordered her breakfast, whispered a prayer for this man and left quietly. Wow.

I  have thought often about  these events that split our lives into two halves, right down the middle so that there is a 'before' and an 'after,' these are the gifts that no one wants. They are the things that we worry and fear, the 'what if's' that keep us up at night.  In the midst of them we are angered and confused and hurting and thinking "there is NO good that can possibly come from this and even if there is? well. I don't want it. I just want my life as I knew it before this happened."

I am pretty open about the fact that I am on anti depressants that make it near impossible for me to cry. The tears sometimes rise up but they just don't spill over, that feeling of sadness just sits at the top of my throat, locked in a tight jawed surrender. This past weekend I was finally able to sit and cry, free flowing streams of hurt and doubt. I let myself give into things I usually try to keep at bay, I let myself grieve for our hardships in our last several years, how disease has ravaged my body, my hands, carved my scars. I let go of the guilt that says, "Just be grateful you're alive!" but I also released the bitterness that says "why me? I don't want to be used in this way God, it has cost me too much!"

It has been a long road of picking up my gift and turning it over in my hands; many hours of reexamination, many tears shed on the pages of my journals, many anguished prayers prayed, many hard conversations with people who love me and undoubtedly there's more to come. My healing and how I use it in my world is a daily decision I must make. I also know that when I make the wrong decision, and I live in defeat or bitterness that I must forgive myself because my God is greater than my self loathing and he has already forgiven me. So I pick up where I left off and I stay the course.  I keep choosing the perspective that gives me life. I compare trauma to that person in your life who you have grown to love, despite their unbecoming qualities, despite all the flaws that infuriate you; you choose to see their loveliness, and know that when you add up all their attributes, good, bad and ugly, they equal one amazing, valuable entity.  And that, friends, is the miracle of LOVE.

To say its not an overnight process would be an understatement. I often talk about how the bitterness I felt in my soul came much later, at first I was just happy to be alive. Now, two years later as I'm still dealing with the aftermath I see not only the miracle of being alive, but the miracle of being able to overcome and thrive. I'm able to see and appreciate more clearly the gifts that I never wanted. I think about my brothers and sisters who are a part of the misfit band of the walking wounded whether they want to be or not. I marvel at their hopeful outlooks and how they have been transformed by tragedy. I see how we're given the ability to empathize on a different level, to know that we all have scars and brokenness and never to judge or gawk at the ones who have to wear them like a badge everyday. To value each person regardless of their appearance as a miracle To get to be that diversity, that person that makes others stop and question their view of the world. To learn to accept the limits and finite status of humanity but still not let it squelch the hope or creativity or resourcefulness that lives in us. The clarity to know what really matters...these gifts have all been so costly, and perhaps you don't have go through trauma to receive them, but I did.

After this past weekend, I am more than ever committed to healing, for myself and for others. I am determined to share these gifts that I so begrudgingly received in hopes that it might make someone else's load a little lighter. What have you been through that you can turn around and offer hope to others with? Is there some part of your story you still need to work through in order to be able to do this? I hope this encourages you to dig a little deeper into those areas and share your gifts with those in your circle of influence.


Thanks for being here today!

Jenna

Related :

find out more about Woman Camp

read my story here: Day 73 and Counting and here The Stories We Don't Tell

What I've Read 2017

I have a fun little tradition of tracking everything I've read in a year. I'm one of those multitasking readers who like to read 2-3 books at once, usually a fiction and non fiction. Sometimes its hit or miss, but since last year I joined a book club I was even more disciplined to record the books that piled up by my nightstand. Readers are always looking for the next thing to read so I thought I would share! Click the title of the book for even more info, thanks Amazon (what would we do without you!?) Happy Reading!

Fiction

Dark Matter By Blake Crouch

This psychological, sci/fi thriller, was not what I expected. Don't let the genre scare you off if it's not your usual forte, this story will suck you in. I actually look for books that will stretch me as a reader as I tend to get stuck in a reading rut and this one fit the bill. Its main character Jason Desser wakes up in a life that's not his own, but is strangely familiar, in fact it's a life he once dreamed of. This new life is his “what if’s” materialized, what his life would've looked like had he made one choice over the other, prioritized career over family. Not that he was unhappy in his other life, he loves his wife and son dearly, but he had not become the celebrated physics academic he had set out to be. Although he thought this was his dream the thrill of it wears off and soon he is frantically trying to reconnect with his wife. He discovers that he is has somehow in an alternate dimension of time and that there is an enemy with a malicious plan he must outwit. This mind bending, fast paced, love story about choices and regrets, family and dreams will keep you guessing until the very last pages. And you will learn some pretty cool things about physics along the way.

Before We Were Yours by Lisa Wingate

I had no idea what this book was about when I started reading. It was passed along to me by my mom so I stepped out on faith not knowing much about it. It was a little slow to take off as the plot is being set up, but pretty soon I found my self lost in the world of Rill Foss and her siblings. They are abducted into what is supposed to be a children's home ran by Georgia Tann, one of the most infamous child traffickers of the 1950s. The story alternates back and forth between Rill’s time period and present day, then is all tied together in redemptive fashion. Parts were hard to read, especially the conditions in which the children were kept and how they were mistreated, but the author does a wonderful job of keeping her descriptions clean yet vivid enough to capture the depravity of the situation.

This is How it Always Is by Laurie Frankel

I kept seeing rave reviews for this book online and although it's timely subject matter didn't have a personal appeal to me I decided to give it a go anyhow and I'm so glad I did. I was instantly charmed by the quirky family in this book who are struggling to raise their young children. The youngest of five brothers is of particular concern because at an early age he shows a propensity toward feminine ways. When asked what he wants to be when he grows up his answer is “A girl.” He wants to dress up in skirts and wear clips in his hair. He is confused by his gender and more so are his family and friends. The story outlines the parent’s behind the scene worries and decisions that they can only hope will be for the best. They want to so badly to demonstrate acceptance to their child but are terrified that the world around them will not. This book delightfully surprised me and will ring so pertinent in the ears of every parent who has ever wondered if they were making the right decision about their child. (So yeah, basically every parent.) And more than that, I feel as though it educated me and opened my heart more towards the gender issues that many grapple with.

White Oleander by Janet Fitch

I am extremely late to the party on this one. Written in ’99, it's practically vintage. It was chosen for Oprah’s book club, a story she admired so much she wanted to narrate the Audio edition. I feel so lucky having found it in adulthood, I never would've appreciated it as a teenager. It’s poetic lines, relatable truths and falsehoods had me dog earring several pages. This book haunted me for weeks after I finished it. After reading through several reviews for this well known novel, it was evident that this story is effectual either for better or worse. Critics of the book call the language melodramatic or flowery but to me the rawness of the story needed this treatment. Then again, I realize I am drawn to some what gritty stories.

It follows the story of Astrid, daughter of a tortured artist type mother whose been imprisoned, and her growing up in several different foster homes. Each home features such rich characters and settings that they almost feel like mini essays within themselves. Astrid learns in sometimes disturbing and difficult ways about what love is and isn't. She experiences the ins and outs of growing up, sex, drugs, religion and independence on her own all while trying to quell the fear of being apart from her mother. She longs so much for family and belonging that just always seem to be out of grasp. It is heart wrenching and hopeful and just all around memorable. This is one book I would read again, which is something I am not quick to do, however I would NOT recommend the movie. Despite the wonderful actresses (Michelle Pfeiffer and Renee Zellwegger) the story line just isn't the same, so for me this flick just can't hold a candle to the book. Isn't that usually the case though?

(P.S. there are some explicit and provocative scenes in this book, just FYI for sensitive readers)

This Must Be the Place by Maggie O'Farrell

This is the very last book I read in 2017 so it's still fresh in my mind. Daniel Sullivan and his supporting cast of characters (and there's many to keep track of) tell the story of a father and his blended family. His life is suddenly turned on its head when he catches wind of something that happened in his past unbeknownst to him at the time. He sets out on a quest to find the truth without telling his wife exactly what he is doing which, as one can imagine, causes quite a few problems. O’Farrell creates multifaceted characters, vivid settings and has a vocabulary that had me using the dictionary feature on my kindle often (any one else love learning new words!?🤓) One side note, this is not a book you can check out on, as it's told from various perspectives and jumps around in time quite a bit. There were times I had to re read or ask “wait, who is that?” but the story as a whole was well worth the bit of confusion. I read this late into the night several nights, so sleepiness may have also the been the culprit. Either way, the diverse characters in this book are well thought out and portrayed imaginably. The author definitely plays to her strengths.

Non fiction

Finding God in the Waves by Mike McHargue

I found this author through his podcast “the Liturgist” where he is known as “Science Mike.” I wish this guy could've been my science teacher because I just geek out listening to him explain  how science and faith are intertwined. Even more so, I enjoy listening to his story and his journey through the deconstruction of his own faith. Deconstruction is just a fancy word for taking down and rebuilding the belief system we were raised with; we may keep some of it and let other parts of it go as we learn and grow as individuals. Of course, this looks different for everyone, and for this author, it took him through atheism and back. As a deacon and Sunday school teacher in his church, he lived a double life for some time before confessing his doubts about Christianity. This memoir follows his struggle to believe, the people he met along the way, plus fascinating scientific perspectives mixed in. This book will be a companion for the skeptics and jaded believers or really anyone going through a rough patch in their spirituality.

When We Were on Fire by Addie Zierman

If you had anything to do with the 90’s WWJD religious sub culture you will identify with this story. If you have baggage with church people you will be able to relate. If you have ever stepped out on faith and feel like you got screwed, read this asap. Not to say you will like or dislike the author’s treatment of these experiences, but it's good to not feel alone one way or another. This memoir chronicles the ins and outs of Addie Zierman’s try hard, religious fervor as a teen and what happens when the bottom falls out of your faith in adulthood. Personally speaking, Addie’s story helped put some language to my own experiences growing up in a similar background. It's not that these experiences are anything uncommon or tragic, but that her words capture how it feels to be consumed by your passion for God. It tells how in our youth we are so zealous and ready to save the world before we even know much about it. I used to be deathly afraid of losing my excitement for God, but I've learned now that, like any relationship, there is life after the honeymoon phase. There is a deeper and steadier, albeit less excitable, connection. I'm looking forward to diving back into this book with my book club soon, so I won't expound much more about this one just yet.

Braving the Wilderness by Brene Brown

I've been a follower of Brene Brown for awhile now. She never fails to strike a cord with me. In this book she leads us through braving the wilderness that is our own truest selves, both accepting what we find there and bearing it to others, no matter the cost. It circles the fact that you can only feel like you belong when you feel at home with yourself. As someone who typically likes to go with the flow, this was such a good reminder for me to speak and let my voice be heard even when I worry about how others might perceive me. It let me know that it's ok to not be everyone's favorite as long as I am being honest with my inner workings. Reading this will inspire compassion for yourself as you go about the daily work of giving compassion to others.  I also read “Gifts of Imperfection” this year and struggled which one to put in this list, as both are helpful when you're needing to do a little emotional work.

The Road Back to You by Ian Morgan Cron and Suzanne Stabile

I have been a fan of the Enneagram as a self awareness tool for a couple years now and this is the book I always point people to if they want to learn more about it. The book walks you through the nine personality types and helps identify which one a reader relates to. I am number 9 with a 1 wing, which tells me that I intuitively blend well with many other personality types. The downside to this is that 9’s can often lose themselves in other people's identities.  I am also peacemaker which can be helpful when it's kept in check, but can become a downfall when it comes to setting healthy boundaries or working through confrontations. Understanding this about myself has helped me gain insight into my relationships with pretty much everyone in my life. Not to mention how insightful it can be to have family members find their  own type. This is a must read if you're into personality typing and self awareness. Also good to know: the authors have a podcast by the same name where they interview different numbers and dive deeper into the Enneagram.

Simplicity Parenting by Kim John Payne and Lisa M. Ross

I can say for sure this is the only parenting book I have willingly finished. Undoubtedly, the idea of minimalism has swept the airwaves of the media. While I’m not ready to move into a 500 square foot tiny home or pare my wardrobe down to 5 items, applying the concept of simplicity to parenting is refreshing. The book touches on four realms to focus on simplifying: Our home environment (you can stop being a toy manager!), daily rhythms, schedules outside the home, and screen time. Every parent I talk to can use help in these areas. Most of all, what I liked best about this book is that after turning the last page I felt empowered to make changes in all these areas. I didn't feel guilty or like these goals were not attainable. I got insane joy from ruthlessly purging toys and books. I started a toy “library” with what I kept so that we could rotate toys that were kept up and ones that were kept out. I also took charge of the Christmas lists and asked for carefully selected, quality items our homeschool would benefit from. Now of course, there were still toys and of course things gets messy and strewn about, but it just feels easier when there's not multiple baskets of playthings everywhere. We also cut down majorly on screen time and I vowed I would get us into nature more even in the frigid winter. Right now as we're ringing in the New Year, I'm looking forward to having a bit more of a routine established and will go back and reread the section about creating predictable rhythms that children find security and comfort in. This is one of the most helpful and practical books on crafting a family culture that is peaceful and less complicated. Raising kids is anything but simple so I am going to put energy into the few things I do have control over. The author, Kim John Payne, M.ED,  is highly credible as he has been a school counselor, educator, consultant, researcher, and a private family counselor for twenty seven years. 

Hope you find something good for your mind and soul on this list! I'd love to know what you are reading or your favorite book from last year. Thanks for being here fellow reader!

Jenna

'Tis the Season

Do you ever just feel a general sense of overwhelm?

Maybe you can't even pinpoint the reason why but you just feel scattered? Like you have had too much coffee on an empty stomach?(guilty, silently slips up hand while taking another sip)

I was having one of these moments a couple weeks back and have them more often than I care too. As a home educator and mom to three I obviously have things that need to get done. Big things, small things, urgent things, things waiting on the back burner,  things that only I can do. But then along come these days where it feels like the existence of other people and external stimuli are closing in on me. The noises of daily life, the innocent questions, the text alert, the kids fighting, the growing to do list and calendar staring at me; all normal and functioning properly in and of themselves, but when they all crowd into my brain at this exact moment I just feel... frozen. Like I might crack if one more weight gets laid on my thin, icy exterior.  

Recognizing this state is, believe it or not, is progress. Before I would jump into action, tackle all of those things that need done (but are never really "done") thinking that afterwards I will rest. Only I would never get to the end of the list and I would fall into bed after midnight feeling like I accomplished some things but not all the things. Nowadays, I try to acknowledge this state of overwhelm as a warning light. My brain is trying to tell me I am running on fumes, only it's not as simple as going to the gas station for a fill up. 

This is not a time to solve all the problems or organize the junk drawer or dive headlong into my to do's with another cup of coffee in hand. These are all attempts at control, leaving me with a false and fleeting satisfaction but ultimately distractions from the bigger issue. This is not a time to produce.

This is not a time for fake resting something also known as numbing out. Scrolling or bingeing mindlessly,. This usually involves a glowing screen and staying up far too late. Occasionally accompanied by sugar/caffeine/empty carbs/chocolate. For others maybe it's alcohol or naps or shopping. Anything done in excess to avoid ourselves. While those things are lovely and have their own time and place, when I'm feeling bottomed out is not one of those times. No, this is not a time to consume. 

Instead of producing or consuming I attempt to treat my thoughts and feelings like a little child, like someone who I know needs care. With little children, we often address their physical needs first since they are not always aware of their own bodies' cues and how it affects them psychologically. We might feed them a nutritious snack, get them a drink of water, lay them to rest with a good book and some cuddles. Maybe they need fresh air and sunshine and to play off their nervous energy. We might clear their schedule, fill the tub with bubbles and get them into bed early. We wouldn't give them an energy drink and push them to do more. 

I can do these things for myself when I am feeling a melt down coming on. I pause and ask what basic needs I haven't met for myself and in taking care of those it clears my brain enough to cope. As adults we often think we can do without the basics: good food (i.e. contains nutrients), water, bathing, exposure to the sun, human contact. We don't grow out of these needs. As simple as it sounds, we all need reminded. One look around the internet tells us everyone struggles with the upkeep of self care. There are apps that remind us to drink enough water, countless websites devoted to eating right and staying fit, and self help gurus galore telling us to get off Facebook and read a book (preferably theirs) or have a real conversation with an actual person. We all know this, yet its not our default. We humans tend to take the path of least resistance even though its rarely helpful.

So I'll ask myself in one of my frantic moments, like I'm talking to one of my children:

What do I need? How can I care for myself in this moment?

And often (like my children) I will have no clue what I need. That is, until I sat down in a not so frantic moment and made two lists. These lists were inspired by Brene Brown's words in The Gifts of Imperfection:

"How much we know and understand ourselves is critically important, but there is something that even more important to living a whole hearted life:loving ourselves."

So these lists encompassed things I know about myself and how to love myself (keep in mind these will different for everyone). the first list is comprised of things I try to avoid in general but especially when I am bogged down:

-pushing when I'm too tired

-hiding from people

-scrolling with no agenda

-scrolling with a perceived agenda such as planning, dreaming, or escape

-procrastinating

-being late

-being unprepared or trying to be  over prepared

-making unrealistic, unnecessary to do lists

-over scheduling

-not letting myself be good enough or knowing when to quit

-reading/watching tv until I can't keep my eyes open

-wearing clothes that are too tight, short/long, uncomfortable just because I paid money for them

-too much caffeine or sugar or empty food

The second list are things that give life and are things I *try* to incorporate into my life on a regular basis. However, its good to know what these are and have them in black and white in when I am feeling frazzled and not sure what I need. Usually, while  perusing this list something will jump out at me and I'll know to go do that thing. 

-yoga or other gentle physical activities
-time outdoors or at the very least sitting by a sunny window
-dates with John
-good talks with friends
-laughter
-pondering what I am grateful for
-taking time to do art
- simplifying my to do's; picking 1-3 things that must get done and letting the rest roll over
- silence
- having a flexible plan
- asking for help
-time to wind down before bed, coffee/tea, quiet, reading, face washing/moisturizing, essential oils
- reading that I can linger on and not just consume (poetry, self care books, scripture)
-writing not to produce anything but just for the sheer joy of writing 
-cooking nourishing food and having a slow meal with family or friends
-acknowledging and confronting negative feelings
-realizing I can get through the next moment, just the one at hand, and not worrying about all the moments to come

Some of these things are easier said than done and I am careful not to beat myself up if I make a less than healthy choice. I do know that neglecting these things usually leaves me feeling off. Just like a child, I often falter between what I need and what I want.

During this season, I usually fall into a funk with the Midwest and her shorter gray days but often more crammed into them especially during our holiday months. Posting these lists is a way to stay accountable to love myself as we move into a new year. I hope it's inspired you to make your own lists to revisit when you're feeling overwhelmed or to at least find a few little ways to show yourself some love! Thanks for visiting! Jenna

Don't Hold Back

The last few posts I wrote months ago really took it out of me. I wish I could say I have been working on some cool new thing but no, I was taking a breather. I needed some type of transition, and though its hard to come by, silence. This summer has been filled with good books galore and a sabbatical from writing my own words.  I needed time to store up creativity in the quiet mornings while the kids sleep off their summer wanderings. No conjuring of experiences to write about (the best ones come on their own anyways) or narrating in my head (please tell me I'm not alone here, fellow writers). I needed time to just be...

To let all the days flow through me like sand sprinkling through an hourglass. Not trying to record or post on a feed or timeline, just letting each moment slip away like it was intended to.

To practice gratefulness for right now. Whether right now is seemingly important or not. 

To lean into fears and doubts, opening the box they've been kept in so I can see what they have to say. They teach us alot when we actually listen.

To let my actual body just exist on it's own with out owing anything to appearance. To just wear and enjoy those unforgiving summer clothes and bathing suits that I'm comfortable in. No worrying about tans, or scars, or rolls or any of it. (I did try self tanner, it was short lived.) 

Saying yes to fresh air and bike rides, swimming and roller coasters. Things I would usually just try to supervise or coordinate for the kids while I do grown up things.  

One of my favorite things has been to put little Joel in my lap, hug him tight with one arm, and swing as high as we can on the squeaky playground swings. His reckless excitement over such a small thing hits me somewhere deep. It lets me know that although there is solemn pain and injustice in the very air we breathe, there is also joy and healing that abides. 

I found a video on an old iphone from Jayda's birthday. Without even watching it, I remember the exact day. It was an unusually warm December day and we had taken a long walk and ended up at the swings on the riverbank. I was just on the tail end of that first year stage after you birth a child where you don't quite feel like yourself. Nothing you own fits the way it should, your body is out of whack and you just have to sit in your mess and uncomfortable-ness until it passes or at least you find your new normal. I remember that I had ventured out spontaneously and that was a good sign that I was regaining balance. 

I hesitantly push play to relive this memory and watch us swing back and forth, little Joel experiencing the feeling of swinging, the climb up, the falling again and again, for the first time 

The wind blowing through unkempt hair, the much needed laughs;
Swaying like a pendulum, slow motion in the winter sun. 

It was one of those sweet moments where you feel grounded and present, connected to the people you are with. I cherish that memory although it is tinged with the sadness of knowing that in a couple short months our world would be rocked. It's hard to watch without wishing that somehow how I could go back. The "what if's" start to form...but no, I wont let those thoughts rob the innocence that was in that memory.

Instead I have to let it remind me not to hold back. To not sit on the sidelines, to go for it when opportunities big or little present themselves.  To even be on the look out for those moments and take initiative to create space in my days that would allow for such a moment. It could be investing in a new friendship, an experience you wouldn't normally say yes to, a risk that you can't just can't fathom taking. 

Granted we can't say 'yes' to everything and everyone. 'No' can just be just as healing and rewarding as its counterpart. This is where wisdom and self awareness come into play. Find out what gives you life and do those things, prioritize them, even if those things scare you a little bit. Make it a practice to be holistically ready to take the risk of living with your whole heart, facing fears and awkwardness and pain. Own them.

What is this for you?

Take a few minutes to think of a time you felt refreshed, or grounded, or just...alive. What were you doing? 

Let's do more of that. Don't hold back.

Happy Sunday, 

Jenna

Rehab

Start from the beginning : 
CVICU
LTAC
LTAC II


What I love about rehab is that I am free of cords and tubes. I learn to cover my open stoma with my good hand in such a way that I can get my voice out. It gets easier with practice. I still cough and the residue in my lungs comes up frequently. I have these coughing fits that seem to come at about the same time every day. The fits can last anywhere from a few minutes to over an hour. The doctors tell me this is normal for the condition of my lungs and could last at least 6 months.  

The first weekend I'm admitted, John brings Italian food into the cafeteria and wheels me down to eat with my kids and some other family members. They've all come to celebrate Mother's Day. I think about my own mother and have thought about her often during this process. She has taken off months of work and stayed far from her home in order to be by my side. She comes in early every morning to be with me now that John has to go back to work. She has shown so much patience and endurance, I worry about her taking care of herself. Before we meet our family in the cafeteria John takes me to the gift shop and I buy my mom a candle. There's really no purchase that can express how much I appreciate her steady companionship, so this will have to do for now. I start mentally composing a letter to her, knowing that it would probably be worth far more than anything else.

Being with my own children is especially meaningful at this point in my journey.  This is the first meal we have shared since I've been sick. I savor each of their cherub faces at dinner. Joel happily chattering, covered in spaghetti. Jaren bouncing around in his seat and then buzzing around the table. Jayda cracking jokes with her gorgeous grown up smile. They all have almond shaped eyes and look reminiscent of each other but different at the same time. I can't imagine loving them much more. Even with my heart overflowing, after 20 minutes of sitting in the wheelchair I need to go lay back down. Sitting up is still exhausting. My bones hurt where they touch the chair, not used to the weight they bear out of the relative comfort of my hospital bed. 

On Monday at 5 AM my first day begins with the lab knocking at my door wanting to draw blood. For some reason I thought my sleep would be uninterrupted here. After I'm awake I have to start the harrying process of sitting up in bed, standing with my walker and rotating to my bedside toilet. "No bed pans in rehab" I had been told. John has to help me do this, the both of us operating in a half awake, half asleep state.

They bring breakfast a couple hours later after I had finally just drifted back to sleep. I eat pancakes and watch birds fly back and forth outside. Way in the distance between rows of city blocks is a prominent historical church that I instantly recognize with its circular stain glass windows and turrets jutting up towards the sky. The multi site church our family attends across town has taken on the project of restoring it so that it can serve as a branch for college students to attend. They had recently launched this campaign right before I got sick. Everything that has happened since then is still so much to process. Yet as I take in this city that has become our home I sense a connection, an unjustified hope, I can't quite explain. 

An occupational therapist comes interrupting my thoughts and gets me out of bed. She wheels me to the shower room. I so anticipate having the warm water run over my body, a simple pleasure I haven't enjoyed in two long months. I have to wear rubber gloves to protect my hands. I move at a snail like pace as the therapist helps me move to a seat in the shower stall. She stands outside squirting shampoo and body wash into my gloved hand. I am shivering even through the spray of warm water and my teeth chatter as I try to wash myself. I accidentally splash water into my trach and immediately a drowning sensation pushes down my throat. I stand quicker than I know I'm able to and shut the faucet off. The therapist throws back the curtain wanting me to sit back down.  I'm covered in soap still, shaking and coughing erratically now. She gently helps me rinse, dry off and dress. I slowly hold out one humbling limb at a time for her as she slips clothes onto my clammy, emaciated body. I stub my toe on the rough floor of the shower stall and a puddle of dark red quickly forms beneath my foot. I knit my eyebrows in concern and look to the therapist. She quickly grabs some gauze from a nearby supply cabinet and applies pressure. "It's the blood thinners," she reassures me. She looks up at me apologetically. Next shower, she says, she will cover my neck and warm the bathroom before I come. I don't stop shaking until I'm nestled back in bed under layers of blankets.

Not long after my shower I meet my the therapist who will be working with me.  She wheels me most of the way to the gym, but wants to see how far I can get using a walker. My mom follows behind with a wheelchair. Once we are there, I sit on a stationary bike and pedal for 6 or 7 minutes at a slow, even pace. I look around the gym and see mostly older people paired with their therapists. There is a wooden model of a car to practice getting in and out of, a kitchen equipped with appliances and a small table.  Some leg weights sit in the corner and balance bars with a conveyor like walkway occupy the middle of the room.  There is also a long row of padded benches lining the wall where one man sits and argues with his therapist. His frail frame is bent over a walker, his expression irritated and evasive. He says he is tired and doesn’t want to try walking. I recognize him as the man in the room next to mine, the one with the blaring alarm sounding his attempt to get up out of bed at all hours without assistance. This is usually followed by the loud voices of the nurses reminding him that he is in the hospital and to push his call light if he needs something.

 “No, not today,” he keeps insisting batting away the therapist who tries to get him to stand. “Take me back to my room. I want to lay down.”

Fear rouses inside as I recall being in this reluctant frame of mind not long ago. I hope this isn't a foreshadowing of what is to come for me as therapy becomes more intense. I know that my story and this man's are lifetimes apart, yet here we are in the same rehab facility, a little blip on our timelines coinciding. Suddenly the brevity of life sneaks up on me sending a shudder down my spine like its done so many times since being here. I have to intentionally turn my attention to stare out the window, the commonality of human suffering and ultimately death, too much to ponder right now. There is the familiar blanket of Midwestern gray that lays over the hospital parking lot, the stark trees reaching upward. It isn’t much to long for, but still I wonder when I will get to breathe fresh air for the first time since being sick. I try to let that motivate each second that ticks by on the bike.

My therapist is optimistic that I’ll be out there in no time. She is sweet and tough rolled into one. I can tell from our first stroll down the hallway that she is not going to let me slack off. Still, throughout our time together she allows plenty of breaks for me to catch my breath and cough up mucus through my stoma. Every so often she stops to make sure I’m ok. She makes easy conversation with my mom and I. We learn that besides working as a PT she is also a dancer and has the athletic build to show for it. I admire that about her. I’ve never really been athletic and this is probably the closest to working out consistently I have ever been. Despite the exhausting recuperation involved, I begin to look forward to sessions as I surprisingly learn to do more than I thought I could. When it is my main therapist’s day off I miss her and the quiet confidence she instills in me. She doesn’t look at me with pity or doubt. I can tell she likes working with me and that she believes I can do these daunting physical tasks.  She tells me to do something and I try my hardest to do it. 

Soon I am walking slowly without the assistance of the walker, but still leaning into my therapist. On the next day, I take a few steps without her, then a few feet, then ten feet. Besides controlling my labored breathing, the hardest thing is balancing and keeping my head up. I feel top heavy and I just want to watch my feet. It feels like I am trying walk on a fun house floor that tilts back and forth with each step. The skills can be unlocked, I tell myself. My body was made to do this, it just needs a little practice. 

With each day that goes by I build a little more strength and a little more confidence. I can scoot my walker further and further and finally all the way to the gym. I learn how to carefully get in and out of the model car. I stand between two handrails bracing myself and practice slow leg lifts and squats. I learn how to maneuver myself around the small kitchen and hold the walker while I open top and bottom cabinets. One day, I make a grilled cheese sandwich, strenuously gathering the cheese, bread, frying pan, and spatula. Afterwards, I'm breathing too hard to eat the sandwich. With each session, I exhaust what little energy I have and go back to my room to nap so that I can be ready for the next time. I also relish the satisfaction of the progress I've made knowing it brings me one step closer to the goal of going home. 

My proudest moment is when I walk figure eights around cones that have been set up in a straight line. I wobble a little bit on each turn but my therapist is close by and assures me she will not let me fall. I trust her strength more than my own.

It is nearing the end of my stay here and the talk of discharge is both thrilling and daunting at once. I have wanted to be at home for so long but I worry about the details. I worry about getting around my house alone and getting back forth to appointments. They are making arrangements for a home visit. I grimace thinking about all the stairs in our skinny row house and how far the bathroom is from my bedroom. How will I make myself food let alone take care of my kids eventually? I'm so tired of being apart from them. I have to constantly remind myself with every other thought that everything can't happen at once. I have to focus on strengthening the abilities I do have instead of mulling over things I can't do yet.

An airy spring day seems to break through the clouds right when I need it to. My therapist seems almost as excited as I am to step out onto the sunny sidewalk of the hospital's entrance. There is a ramp lined with blooming red tulips that we practice moving slowly up and down. The trees are budding with new green against a cloudless sky. I never want to stop breathing this air that is carried on the slightest breeze against my feeble body. My mom is with us and stops to talk to a doctor that is coming into work. He remembers me from early on and is smiling ear to ear because of my progress. We stop for a picture to post on my update page and to remember this milestone by. Soon I will go home and will have overcome yet another milestone.

My things are packed and I'm dressed, ready for my mom to drive me home. A few days earlier we completed a home visit and the therapists gave us a list of things to prepare for my return. I moved through my house with a walker and practiced walking up and down all the stairs. Now as I anticipate going back I'm faced with mixed feelings. It's a little scary to think that I won't be constantly monitored but yet exciting to think I can sleep in my own bed. I can go outside and be in the healing sunshine everyday. I can see my kids whenever I want to. Of course, it will take time to get my life back completely. 

As my mom and I pull out of the hospital parking lot we stop for a picture. We both look tired and worn, but happy. It feels like this chapter of the story is coming to a close. In the ICU, the staff kept comparing my situation to a roller coaster, they told my family to not get on the ride, to let them handle the ups and downs. Now it feels like the ride has slowed way down and a different picture fills my mind.  Like we are standing on the peak of a mountain, exhausted but elated, and all the while knowing we still have to make the journey back down.

I know that on the completion of every small goal, new challenges loom on the horizon. I am learning day by day to take these challenges as they come to me. I am learning to celebrate in the midst of not being where I want to be yet, one step, one breath at a time.

*** 

Mothers often commit to memory their birth stories wanting to remember all the gritty details. Not only the victory of new life, holding that freshly bathed perfect new human, but also the pain and strife and blood that had to be poured forth. It's symbolic of so much that we can barely put words to the miracle of life, yet somehow we all understand. And that understanding helps to ease the pain. Our pain eases when it is shared, we weren't meant to carry it alone. Alone, our knees buckle under the weight. With other shoulders to bear the burden, it becomes manageable. The pain belongs to all of us. 

By inviting you into this chapter of my story it in it's raw form, my hope is that it gives you a hunger for more.  A desire to see and embrace the hurt of others, to step into their shoes. I hope it gives you courage to allow someone to step into your own story. Then one story at a time, we can become more whole and compassionate people.

Thank you for sharing in this journey with me,

Jenna

LTAC:II

to read from the beginning start here: 
CVICU 
LTAC (part 1)

The morning after that conversation with my sister and best friend my usual waking thoughts of dread and fear gather over me like a cloud. Only this time, I intentionally push them aside and open a Bible app on my phone. I have no idea what to read so I just read a few Psalms. The prose that usually feels a bit dramatic does not seem a stretch right now. After I read a few, I go to Facebook and actually interact with some of the encouraging comments the people on my update page have posted. Usually, I just stare in disbelief not knowing what to say. 

The sunlight streaming through the shaded window catches my eye and for a minute I daydream about going outside and wonder how cold it is. I think I'll ask someone to open the shade when they come in. I look around at the rest of my room and instead of seeing the machines, I study the paintings my friend Rachael hung and the banner my kids home school co-op made. I admire the pictures that have been brought over from ICU. Pictures of life as I once knew it, normal and smiling, where the biggest problem is wondering what to cook for dinner. I decide today will be different and that I will get back that life one step at a time. 

Looking at the clock, I count the hours until physical therapy. After the coughing fit and nausea have died down, I start my leg exercises. It occurs to me that these little things matter right now and that I won't be able to just jump out bed one day. It is going to take many tiny deliberate actions all focused in the same direction. 

When therapy comes I am determined to stand. I want John there. I trust his strength and looking into eyes infuses me with confidence. Once I'm in position on the edge of the bed and my feet on the floor, the therapist places a walker in front me. My mom stands off to the side with the other therapist and reminds me to control my breathing. It feels like a heavy weight is pushing in on my lungs like I've just sprinted a mile. All my air seems to escape out my trach so I can't fill what little lung capacity I have left. My feet hurt on the hard floor and I feel the bones press down as I grip the walker and summon my leg muscles to stand. I'm shaking and breathing hard, but I am standing. The therapist wants to see how long I can make it. It is about 15 seconds before I need to relieve my legs. After a rest we are going to try again. 30 seconds this time is my challenge. I am able to do it but am tiring quickly. I sit down and immediately want to lie back. The work of breathing and balancing is harder than I thought but I am also pleasantly surprised by my effort. I feel like I jumped a mental hurdle and that if I practiced enough I could get the hang of it. I am already thinking about tomorrow, the therapist wants me to try to stand for a minute. She encourages me to do leg exercises and to try sitting in the chair for a bit later today.  She does not look at me with pity today and there is a slight shift of assertiveness in her tone. Perhaps she sees my meager offering of willingness and is hopeful that I'm turning a corner. I am hopeful too.

Day by day, I overcome seemingly little challenges in therapy. I go from standing 1 minute to standing for 5 minutes; from taking a few steps in my room to slowly shuffling down the hallway. The physical aspect of it is terrifying. My oxygen drops with each step I take. I sweat and grit my teeth concentrating on each step. The therapists constantly have to remind me to keep my head up as I walk but it feels so foreign. I put one foot directly in front of the other, trying to calculate each step, like I am walking a tightrope. When the therapist points this out, I have to watch how other people walk to understand. I wonder if this is what toddlers feel like when they are attempting their first steps.  

John shows me a video of my progress but instead of watching my steps I'm cringing at the way my back looks through my parted hospital gown. Every bone in  my spine seems to be visibly protruding through my thin flesh. I am taken aback as if suddenly realizing how much weight I've lost. John tells me about my favorite RT, the one who steadied my anxiety attack that frightening night. She had lost her daughter to cancer in recent years. Even though maybe she wasn't supposed to, she told John how she watched her daughter dwindle to nothing. How she could not and would not eat despite the families pleas. Her daughter was around my age. Another piece of the puzzle slides into place. Suddenly, I can't wait to see the speech therapist again. 

The RT's and the speech therapist had been working on getting me to wear a speech valve on my trach. The first few times were discouraging. I would try to make sounds but nothing would come out. Until now, I haven't cared to keep trying. Seeing my undernourished frame had given me new motivation though. If I could learn to use that valve, then I could take a swallow test which would allow me to eat something other than ice cubes. 

I have John screw the valve over my trach and try the vocal exercises the therapist showed me. Nothing comes out. I do this in my spare time for the next couple days even though my attempts are futile. Out of the blue when I'm practicing by myself, I hear it, my voice barely above a whisper. I'm so excited when John comes in. 

"Can you hear it?" I ask him in my hint of a voice. A smile fills his face as he nods, "I knew you could do it."

By the next day, I've got it down. My speech therapist tries not to get emotional when she hears me speak, but I see the tears well in her eyes as she writes on her clipboard. She says she will set up a swallow test for the following day. I have to drink an orange concoction with barium in it so they can x-ray my esophagus in action. I surprisingly pass the test without any complications and I'm cleared to eat and drink. 

Not very long after I'm wheeled back into my room, the speech therapist brings in a tray of food with a plastic lid. She excitedly removes the cover to reveal a plate of steaming hot hash browns and scrambled eggs. A small cup of apple juice sits off to the side. The meal looks about as appetizing as hospital food ever does but I haven't eaten in so long I'm still anxious for a bite. I try a potato first and chew it carefully hoping I wont choke or cough. There is overwhelming metallic taste with a hint of potato flavor. I chase it with apple juice which is sickeningly sweet. I can only manage a few nibbles before the familiar nausea rears it head. 

"It may take awhile for your taste buds to get back to normal," the therapist half smiles and covers the food back up. "You can try again later."   

Over the next several days, I discover after trying out an array of foods that everything tastes horrible. When I longed for a drink I craved a sugary cherry slushie, but now it tastes so sweet I spit it out like rancid milk. My mom and John beg me to eat constantly and bring me all sorts of food from the food court and the trendy restaurants in the surrounding neighborhood. John is working with a nutritionist and prepares smoothies and bone broth soups. He brings in bags from Whole Foods every other day to see if there is anything at all that looks appealing to me. Usually, I only end up taking a few bites of anything that even looks remotely edible. Besides the taste factor, my appetite is nonexistent thanks to the feeding tube that is pumping me full day and night. One night, exhausted from therapy, my mom feeds me small bites of penne pasta as I nod off to sleep. My goal for the night was to eat five bites and I barely achieve it. I know everyone is frustrated with me and doesn't understand but I just have no desire to eat at all. Again, I wonder if this is how a toddler must feel.  

Hoping to please my caretakers and fearing further weight loss, I mostly nibble salty turkey jerky, pretzels and clif bars. Plump strawberries and grapes from the cafeteria are the next thing I learn to stomach. Despite the taste, at one meal I am finally able to eat one chicken strip. I become better at forcing myself to eat as my stomach slowly expands. I don't come close to eating a full plate until it is nearing the end of my stay in LTAC.  


I am terrified to leave here. One would think, I would want nothing more. I doubt my ability to withstand 3 hours of exercise each day. Right now, a tortoise paced walk around the LTAC unit leaves me breathless and debilitated. I won't have that special RT to carry the oxygen tank during therapy or my favorite nurse smiling at me from behind the desk. The staff in this unit have become familiar and they cheer on my timid progress. Regardless, my therapists think I am ready and things start happening quickly. A new doctor removes my IV and the chest tube that was piercing through my upper left lung. When the nurse pulls the feeding tube out of my nose, the sensation is beyond relief. I can't stop touching my face. I smile as I feel a tiny bit of my old self shaking loose.

The day before my discharge, the jolly RT I've come to appreciate happily dislodges the trach from my neck. He covers it with a gauze pad, instructs me on cleaning it and assures me the stoma will close in a week or so. I open my mouth to thank him but no sound comes out. I don't know what I was expecting, but I was shocked and disappointed that I am back to having no voice.

"Try covering the hole with your hand," he smiles as he cleans and gathers his supplies. "Your stoma should close up in about a week, maybe two. There will be some scarring there but once you get out in the sun and get a little tan, you will barely notice it."

I wasn't prepared to deal with the loss of my voice, let alone the gaping half dollar sized hole where my trach used to be. I try to be optimistic that I will heal quickly. I try to view each new challenge as just another obstacle to overcome on my way back to normal health. Still, being able to speak without hindrance had been so freeing. It made me feel as though I was participating in my recovery and it wasn't just something that was being done to me. The trepidation of moving to formal physical therapy is heightened by my return to silence. I am discouraged, to say the least. The jumbled emotions well up and spill down my cheeks in a steady flow. 

It isn't five minutes later that there is a knock on the door. My mom comes in followed by a woman with a lovely smile. She comes straight to my bedside and tells me how happy she is to finally meet me. Behind her is a man who also smiles kindly and they sit together beside my bed. I immediately know who this couple is even though I've never laid eyes on them. My family met Elyssa in the waiting room of the CVICU. She was there doing the same thing they were, waiting to hear news of progress or decline of her husband Joe, who is now sitting right beside us. He looks healthy and ordinary like if you passed him on the street you would never know he was struggling to live just a few short weeks ago.


Although I'm certain I still have trails where the tears streamed down my face from just a moment earlier, the mere presence of this couple  uplifts me. I just keep looking at Joe, sitting there breathing normally his trach scar barely visible. He tells me how he went back to work this week and him and his wife take long walks together in the evenings. This sounds so delightfully mundane, just so perfectly ordinary. We talk about my impending transfer to therapy and the worries that surround it. Joe keeps saying,"If I can do it so can you." 

When they leave, I'm so struck by the timing of their visit that my soul is quieted like a baby laid to rest. This feeling gives me the strength I need for tomorrow's discharge and move to formal rehabilitation. 


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