I got out of the hospital 3 years ago today.
In the hospital and then the acute rehab unit, I had been surrounded by helpers and support people. Here in person, on the phone, and in messages sent.
The day I was brought home, I couldn’t feed myself, couldn’t walk through doorways on my own, couldn’t bathe myself, and had to carry a laminated note with me at all times that told me how to find my house, and my front door if I got outside on my own.
It also told me step by step how to get the door open and how to step through it into the house. It also had an emergency number attached in case someone found me and needed to return me.
The support I had in the hospital evaporated to a skeleton crew of people the moment we arrived home. My freedom and independence suddenly cut off, my ability to have anything I could do on my own gone. I couldn’t watch tv or listen to most music or audiobooks because my brain could not keep up with it. So many days I wept until I was aching and my eyes sore. It felt like I had survived hell and arrived on the battlefield, bodies of my warrior team lying spent around me, out of energy and broken for carrying me through the valley of death and heaving me to safety.
And now I was home, and the aloneness of being in this battle was heavier than I can explain.
Often, I sat in the dark, rocking, in physical and mental anguish. So alone. I felt a little like Gollum. My precious. So overwhelmed. And my PTSD nearing nuclear levels as I tried to survive.
My mom fed me—like an infant unable to hold the spoon—every meal of every day. She slept in my room with me because I would wake not knowing who I was or where I was, and I wouldn’t recognize her. She would shhhhhhh calmly at me, talking me down the fear ledge and hold me as reality broke through the mental and drug-riddled fog that was thrashing my soul. And the reality settling on the mast of my ship on this journey was terrifying and agonizing.
I don’t know how I didn’t give up. I’ve always just been built to dig in and fight. I am thankful for my family and the close friends who took on the sudden weight of doing it all with less help.
I kept reaching out to people, trying to be included, trying to love on others, and desperately trying to explain how lonely I felt. Occasionally, a person would come by the house, but it was like one a month, if that. Even my skeleton support system became almost completely support by phone or text because LIFE.
Then Covid hit. And people all over started shouting they were suddenly so alone, so unable to bear being shut off from the world, so heartbroken to be incapable of going anywhere.
And people flocked to have visits through my glass door, front porch visits that I valued highly. And I also empathetically knew were not all really for me, but for most for them. So I gladly engaged seeing them.
A gentle prompting question, a genuine wonder, is if the visits were for me as people incline to lead, they would have happened before then, when I was crying out for anyone to hear me, and they would not have ceased when the world started to open back up and they had other places they could get their togetherness filled.
I share this to shine a light for others going through this and also to encourage my own soul. I am part of several chronic illness groups online. I have counted in heartbreak as there are at least 75 different posts a day from all different people, crying out. They say they don’t know where their friends went after their illness began, or does anyone else know how to make friends when they can’t go anywhere, or asking what it is like to have a friend in person.
A closer look at this ubiquitous phenomenon for chronically ill:
The day I went into the hospital, two of my absolute best friends didn’t show up. They never called. They never texted. They never sent a card or email. They simply were gone. Later, one told me she felt guilty for not interacting at the beginning and her guilt kept feeling bigger each day, so she walked away. This is NOT a unique experience in our world!
As the years have gone on, I have consistently reached out to people over and over yet the responses in return got less and less until I have nearly given up.
Even the social groups, like hybrid churches or clubs (half in person, half on zoom) have become so heavy to my heart to show up online because what does it mean if I have reached out to the members to be included in life during the week—as they discuss on how they DO LIFE TOGETHER during the week with hikes and movies, parties and game night, prayer sessions, music sessions, and walks, as they encourage each other and discuss they have called and talked to each other throughout the week—but only the leaders continue to make an effort to include me in this every-day life they all have together?
It hurts worse to show up online and have people tell me they were thinking of me or missed me—or worse, we’re going to call me… Again, I would challenge is that statement for me or for them to get out of the awkward moment and having to do some action as follow-up?
I have reached out with as much strength as I can, and having the strength to show up and be reminded that I am not a part of the whole is just outside my level of capability.
I have a core group of people who are still my support—but almost all of them (outside of family and chosen family) are either other disabled people or shut ins, or they are out of state or country and we communicate digitally.
To be clear, having all my bad@ss warriors who have never left me behind is AMAZING and awesome support—until there is a real life need where I need a capable, physically present IRL human. I fear reaching out to people who have slowly evaporated, because I don’t know who we are together today. I don’t know how to ask.
And in that, I do know I’m not alone.
May we encourage each other and not forget each other. May we lift each other up and remember when we are walking, not to forget those still [unable]. May we make space for each other at our tables and recognize each other rather than imagining we have done so and missing the people outside our door.
May we consciously encourage one another and imagine with fullest heart’s intent what their world must be like and how we can connect. And above all, when someone reaches out to us, may we connect with them with a full heart, giving them our entire attention for that moment and showing them they are loved, they are important, and they are not forgotten.
-BilliJoy Carson
Moxie 