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
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