I gave up independence in the pre-op prep room, which feels very much like prison booking protocol, as it appears on cop dramas. A curtain is drawn but provides little in the way of privacy as busy nurses step in and out to place an IV, or ask for patient consent to treat. “We would like to save your tissue for research, if you consent to this, please sign here.” I undress and stuff my clothes–a hoodie, jeans, my sambas, into an evidence bag, well, not literally an evidence bag, but you know, it’s plastic, transparent, draw string at the top, your last name is scribbled on the bag like a Starbucks barista.
“Tall Flat White for Alan.”
“May I use the restroom?”
“Sure, sweetie, it’s just down the hallway.”
I shuffle down the busy corridor, other patients peaking out from their curtains, I step into the bathroom across the hall from another pre-op room, I make eye contact with the patient and family in that room. We go under the knife soon, and we wait for our names to be called to finish the booking process. We sign our names on a photo copied, off center form, naming a healthcare representative.
“Just in case something should happen in the OR, this person is responsible for making medical decisions on your behalf.”
I glance at Whitney.
The die is cast.
The stripping of one’s independence leaves one with dependency. In this case, dependency on my wife, who, in that moment, became my caregiver, my power of attorney, and my named beneficiary. Our relationship will not return to the moments prior to my signing of that form, behind a loosely drawn curtain, gowned, exposed, needy, uncertain. This is no longer a relationship on equal footing.
We offer an oath, “In sickness and in health,” and this is an oath of loyalty, of commitment, “like the ring, a circle, that symbolizes love, with no beginning and with no end.” Yet, there is an end for each of us, and unlike the end many of us experience, my end will include slow and steady loss of executive function and my wife, fulfilling her role as caregiver, will be there to assist, and the impact this has on a marriage, even in times of health, is untold.
The arc of inpatient admission is to quickly strip a patient of their independence, to sanitize the handing over of autonomy to the medical professionals, then to methodically reconstruct independence until a patient is discharged. Days later the evidence bag is returned to you. Your hand tremors as you open the bag. You are changed from the person who wore the hoodie into the hospital at 5:00am on May 26, 2016.
The road to recovery is a prison walk with other patients and guards. The guards restrict your diet, your activities, and your visitors. The other patients are shackled with you, and regardless of our identities pre-booking, we are now bonded together, marching toward our release dates. Each of us pines for our independence. We dream of independence. We visualize freedom: to toilet in a private bathroom, to eat what we want, to pull the needles from our arms.
Independence will return me to my rightful place in the world.
But. It doesn’t.
Independence brings isolation.
Each Friday Whitney leaves for work around 6:30am, I dress the kids for their days, Isaac takes the bus to school, my parents deliver Noah to his preschool, and they take Gideon for a day at their house, at his grandparents. By 9:15am I have cleaned the breakfast dishes, washed the coffee pot for tomorrow morning, and I take my place at the dining table, open my laptop, thumb through the pages of whatever journal article is on my agenda to read that morning, and I stare straight ahead for ten minutes and fight back tears.
Gowned. Exposed. Dependent. Uncertain.
I regained my independence first by wheeling my own wheelchair, then by transferring independently from wheelchair to bed, then came the walker, the cane, steps with no assistance, and at each stage there is cause for celebration. When I was discharged the stages of independence continued: helping with watching the kids, then rocking one or two for bed, watching them for short periods while Whitney is away, and finally, I have all the kids for long stretches, even overnights, with no assistance.
This feat of childcare may seem to you as my natural responsibility as a father to my beautiful boys, and I agree. I share this because of special note is this: there are three of them, they are aged six and under, and anecdotally I know a handful of dads who struggle with their one or two kids for even a couple hours while their loved ones run an errand or grab coffee with friends. Three boys, all day and overnight, dressed, fed, and not dead is an accomplishment in independence for any guardian to young children.
This independence is not always the celebration I imagined.
Each stage of independence brings more isolation. I am dependent on others for help with transportation. Even though I am able to have all three kids, it is a struggle, and many in both my and Whitney’s family help a tremendous amount. And I thank you. But needing to rely on others does emphasize my limitations.
I am independent every Friday. Whitney is working. Kids are at school. My folks have Gideon. I work hard on those things that have become my work: reading, researching, writing, blogging, networking to schedule my next speaking event. Yet, in my freedom, I am isolated. The isolation is a feature of my dependency. I am proud and happy not to require daily, 24/7, help from others. I am proud that Whitney is able to take more and more time to focus on her self care, and is not so ceaselessly consumed with the care of her dependents, but make no mistake, indeed, I am a dependent in this relationship, no longer a marriage on equal footing, but one that tests the limits of “sickness and health.” We are in a marriage tested by our circumstances. Here I write, in the gap between independence and dependency, and in this space that is occupied by very few others, I am met with isolation.
8 responses to “Independence and Isolation”
As always, your writing is eloquent, insightful and touching. Thank you for sharing your experiences.
Jolene, thank you, it is an honor to know you’re reading!
Adam, your words have tremendous impact. You describe infringement on your independence as a result of illness and medical intervention. But you describe, also, the same kind of dependence forced upon the elderly as a result of something as simple and natural as aging. The population whose loss of independence is so broad, but so many either have no way to voice their opinions or are ignored when they try. The isolation resulting from this kind of “independence” is the same, but different. You have raised the issue with your words. I hope your readers recognize you are describing something broader than they may imagine, at first blush. Keep on speaking, my friend.
Jim, thank you for helping to connect those dots between my experience and others. It is interesting how transcendent these lessons turn out to be. Death and Taxes. Aging and Illness.
Adam, I welled up reading your post. We are in a similar situation with 2 young girls (my husband has AA stage 3) and it is just so hard on all of us. But I think we are doing well, and we can seem to find a ray of sunshine even on the cloudiest of days. I am so sorry you and Whitney are dealing this. Thank you for being so brave and sharing your personal experiences. It helps us all so much. Yours was the blog and twitter post I found first after diagnosis. Love and strength to your family. You’re clearly all amazing! Chloe (Perth, Australia)
As a healthcare worker …..I get up every morning before work and remember the words of Frank Ostaseki…the message “take the time before you walk into any patients room to clear your mind and be as open as possible to the person you are serving..” Frequently the view they have is the one expressed here….than K you for writing this , Will share with my coworker s
I am speechless. You know this is a rarity for me. I am choking back tears, knowing how it must have felt for Patrick, who was never able to articulate himself completely after the first seizure. I don’t know how it feels to be on your side, but I do know isolation on the other end. I just love you, and your beautiful wife. All the feels.
My son has GMA he is 41 with a13 son. He had this for 13 month. It is very bad now
He also got Bells Palsy. Now he can’t eat or talk
Is there any thing you do that helps.
God bless you
Ruthe Ann Walsh