Psychologists continually investigate the different stages of life development. While what is expected of every stage varies, it is evident that each stage holds purpose, brings challenges, and reaps rewards. I like to look at life after a spinal cord injury for individuals and families in the same light. One of the first “stages,” which is often neglected, is the transition from inpatient to outpatient. Although I do not have a concrete theory to offer on this stage, I hope to gift honesty and insight into the shift from inpatient to outpatient, specifically for the family unit as a whole.
During the spring of 2020 at age 12, my little sister endured an SCI. She completed inpatient for 9 weeks at the Shirley Ryan Ability Lab in Chicago. As a senior in high school living 2 hours away from my best friend, I ached to be with her. I should mention that the pandemic limited our visits, amplifying the anticipation of her discharge date.
Full of gratitude and hope on discharge day, our reunion was sweeter than honey! Our plan to live in a hotel downtown during my sister’s outpatient rehab sounded synonymous with a mega slumber party to me. I recognize how naive this seems. Still, the sibling experience is one-of-kind. You are not (typically) the full-time caregiver, making it tricky to initially fathom the depth of an SCI. As the day unraveled, it became evident that our family needed to learn how to live together in a new way. Essentially, our family “development” was equivalent to that of an infant. Sure, my mom and sister grasped the basics through occupational and physical therapy, but there is no manual for the family.
Perhaps the most confusing element during this stage of post-injury life is that just months before, you all had a rhythm…and now you do not. Even if you previously had a firm family foundation, you truly will need to learn so much. Tensions will be high (trauma will guarantee it). You will hurt one another’s feelings and say harsh things you do not mean. Your schedule will change every day, making consistency rare. Medical needs shift, and your loved one is adjusting to the new ways in which their body functions. Their caregiver is making a trillion phone calls, checking skin, setting timers, etc. Scanning for potholes as you push your loved one in their new wheelchair will become a part-time job. This is not a job I thrive at, as I hit one about every week, causing both my sister’s and my souls to leave our bodies and return again every single time!
While all of this, and so much more, is occurring, your family will still need to navigate the daily tasks of life. Who is going to run to the store and the pharmacy? What is for dinner? How do you balance work and play? What does it look like to prioritize mental health? The truth is, your family will just have to learn through experience. You will not get it all right, because your current stage of life is not meant to hold space for every area of development post-injury. You see, I doubt you would expect an infant to immediately master what is expected of an adolescent. That would be crude and unwise of you. Recall, infancy does not last forever. You have time to grow, and I have found time to be a wonderful thing.
Despite all of the natural obstacles that come with a new stage of development, nothing compares to the fruit your family will bear. Ultimately, you will learn to trust and fight for one another in profound ways. Due to the pain you will cause each other, you will become quick forgivers. In this specific transition, you will begin to pick up on injustices and ableism, igniting a passion to advocate within each of you. Your ability to laugh and find joy in the tiniest moments will go unmatched. You will become empathetic beings and your hearts will be molded in incredible ways. Does this sound cheesy? Maybe so, but I have found it to be true.
In the same way that all humans develop uniquely, keep in mind that you and your loved ones will encounter this transition in your own ways. Remember, give one another grace, listen well, be teachable, and look for the benefits that this transition has to offer. Oh, and if the opportunity for a mega slumber party presents itself, be sure to take it.