One of the hardest parts of this is that I remember things that no one else will ever know about. If the nature of my injury didn’t already set me apart from the majority of the population, this fact keeps me isolated, even when I’m surrounded by people who specialize in making me glad to be able to enjoy their company.
The idea of being alone in a crowd isn’t new. I’ve heard people talk about it and write about it a lot before I got sick as a common human dilemma. But I never really experienced it until after I got sick.
In my experience you spend some time getting used to the idea of isolation and feeling uncomfortable when friends get together and include you like they usually do. Amidst all the laughing you realize that you’re not the same person you were before. The problem is that the world keeps on turning even though yours stopped. But how are you supposed to reintegrate yourself into the fabric of life? Do you even want to? Or is the only solution to become a hermit?
I had to decide if it was okay that I lived, and once the Big Question was settled I decided whether or not to participate in life. Of course it is a process involving the intentional acquisition of skills – I have needed to build stamina, learn how to navigate public spaces, transfer in and out of different cars, and call upon my friends’ kindness to accommodate my preference for earlier playdates and my inability to drive. I also managed to buy a wheelchair (“Red”) – I’ll introduce you soon. A wheelchair is not a medical necessity for me, but it allows me to live the lifestyle I want to live more often – like the first time I went out after dark with my friends. At that time I was still using Jack the Transport Chair and we went to see the National Christmas Tree in DC.
The bottom line is this: if you survived an event that shook your world or obliterated it, you are a part of the larger community regardless of your feelings. You’ll have to work through your feelings until you reach the point where you decide on the right level of interaction between you and your friends and family.
For me this level of interaction has turned out to be a “no holds barred” kind of situation. The first time JCJ saw me after I got sick (when they came to the US on furlough before Thanksgiving 2011) she sat at my kitchen counter and told me with tears in her eyes, I’m so glad you’re still here and you’re still YOU.
I have been spared a lot of emotional turmoil in a way since mentally there was zero time lapse for me and I naturally expected to interact with my old friends like I used to. For “new” people, though (entirely new people I don’t even know through my siblings), it’s a big deal for me to let them into my world. Reciprocity does not always happen in life and I’m not saying that you, no matter the nature of your trial, should go out and be all BFF with everyone. The point is that you’ll probably be confronted with the choice: will I be a happier person if I learn to hang out with friends again?
When I first came home JLSS was in charge of coordinating visits – i.e. if someone from my church family wanted to come visit me (s)he would talk to JLSS. (Side note: we are a visiting sort of people.) Mommy told her, though, that she should be warned that there was no telling what I’d do during a visit, e.g. I might just wheel off to another room. I never did that, but I think word might have spread, or at least people got the vibe that I wasn’t quite ready for social interaction yet. 🙂 And I’m not saying to rush things – I know no one can impose a timeline on anyone else, and you are the one person who can answer the question, “Is it okay that you lived?” But I’m just trying to offer you some food for thought I hope will hasten your decision to re-enter the stream of life since it’s both boring and painful to watch it flow past you as you sit on the bank, clutching your stuffed horse. (Oh, no wait – that was just me? PS. No offense, Ed xxoo.) PPS. I’m not saying you’ll feel like you “belong” right away – I’m positing that you’ll feel better if you learn to participate.
The picture at the top was my snack time at church. That’s a salted caramel biscotti. Boo Boo was in charge of snacks – thanks, Ai Ai!! I took this pic bc this post was on my mind and the situation was representative of This Disabled Life for me. Do you see a lot of white space in this picture? That’s bc I was alone. I can no longer do social things like get up and join a group, eat standing up or even eat without a table, and I have learned to be happy alone in social situations like these since I’m on an eating schedule and I’ve noticed that I really can’t run on empty without aggravating my deficits – plus I put my stuff down when the room was completely empty, left briefly, and when I returned the room had filled up on the other side. I was alone until a super nice guy came over to talk to me and brought his new baby as entertainment. I immediately recognized this simple act of kindness as something that made me feel integrated instead of isolated, and I bet he’s used to looking out for people on the periphery. Thank you! Pretty soon MMN and Boo Boo joined me and we were a happy bunch.
A few weeks ago we heard a message highlighting the verse,
“That I may know Him, and the power of His resurrection, and the fellowship of His sufferings…”
and although I’ve heard this verse so many times before, it was the first time I really noted that “the power of His resurrection” goes hand in hand with “the fellowship of His sufferings.” The inspired word choice for power’s partner was suffering. And not just “suffering” period. The fellowship of His sufferings. We don’t have a Great High Priest who cannot sympathize with our weaknesses (Hebrews 14.15) – we have an Advocate, a Comforter, and a Father. Before I got sick I knew theoretically that it was a privilege to be identified with Him in suffering. But now I know through experience that this isn’t just about identification it’s about a joint experience – we’re in this together. So even if I feel alone in a crowd sometimes, it’s impossible to be lonely.