This is primarily a message to those of you who are not personally victims of brain injury or acquiring disability because I think it’s most important for you. But it’s really a lesson for everyone, so please tune in and consider this post, which I’ve decided to make a two-part “series.” I’d like to examine the balance between the two most essential aspects of rehabilitation: compassion and intentional determination.
the balance, part 1
I see them as sides to the same coin; together they’re what healing is all about, which I believe at its roots is love. Now, I’m aware of how cheesy that may sound at face-value, but I’ll explain.
A few nights ago I was taking the train to go back home, and for some reason the train workers decided to ask everyone in my compartment to de-board and go farther up the train. So, in a bit of a frenzy (the train would depart shortly), everyone disembarked. As my sister, who was traveling with me, and I stepped down the stairs to get off the train, we both noticed a man with crutches struggling on his way down (on the half of the stairs next to us). He was also carrying a bag.
I paused for a moment without walking down the platform because he clearly needed help, and also because I saw my sister do the same. I was farther away, and a bit perplexed as to how to offer him a hand given I would have trouble myself — but my sister, who’s completely able-bodied, did a beautiful thing that touched me. She neared him, obviously about to offer him a hand, but right as she was approaching him, another kind soul interrupted and asked, “Would you like some help?”
“Actually, I would,” the man said, and the moment was over. My sister and I then made our way down the platform to another coach. We didn’t mention anything of it; actually, I proceeded to pester her like a six-year-old with my “frog clicker” toy I’d just bought from the Shedd Aquarium. 🙂
But little did she know, I’d been quite moved by her behavior in those few seconds. First of all, in our society, women are not typically expected to help men. But her willingness to give this stranger a hand completely defied that — and I’m not saying that none of you would have done the same. When someone is clearly struggling it really should inspire others to help. But you know, a lot of people just as easily ignore it. I’d like to encourage embracing the opportunity to reach out to other human beings who might not want to burden you with a call for help, but could certainly use it. They don’t like to ask you for it, nor want to, and often won’t. There is really something in recognizing their need anyway.
I especially say this because people like me don’t use crutches or otherwise visible equipment that “advertise” our physical condition. To me, it seems almost absurd to ask someone on a crowded bus to let me have his or her seat, or to use a handicap placard. So I don’t ever ask and just risk the entire bus ride (or subway ride, whatever it may be) standing, and I try to use the placard sparingly. Thankfully, I was able to rise above my injury enough to recover enough function to appear more or less as a layman — but the fact is, I’m not. (Yet, anyway.)
I used to live (only about a year after I was discharged from the hospital) with this girl who once snidely asked me, “You can’t do this yourself?” when I asked her to help me peel a vegetable. Believe me, no one in their right mind would ever seek you out to perform such a mundane task if they didn’t absolutely have to. Her complete disregard for what I was just coming out of became a huge point of contention between us, as it expanded from just disrespectful remarks, to never slowing down when we walked together, to blatantly excluding me from house dinners (“Everyone [but me], dinner’s ready”). A bigger person than me wouldn’t hold this behavior against her, but I still haven’t been able to let this go (but one day, I will).
It was, however, a good lesson: Not everyone’s going to understand that your brain is healing; not everyone, even the people closest to you sometimes, is going to ponder the profundity or gravity of your situation and treat you with the compassion that you need. Mainly this is because they lack the knowledge of your experience, and therefore aren’t able to fully appreciate or empathize with you. If you haven’t been through it, the fact is simply that you don’t know.
You don’t know. Period.
This issue can sometimes even exist among the professionals who are hired to help you in your rehab. I remember an OT I used to have was overheard by a friend of mine muttering to a colleague, “If I ever got that way, I’d kill myself.” (So much for hope, right?)
On that note, I’d like to point something out. I was talking to my old recreational therapist at RIC (Rehabilitation Institute of Chicago) awhile ago and asked her about patient depression. She explained to me that the phenomenal thing about stroke and traumatic brain injury is that we at least have the most obvious potential to heal. Some brain-injured patients are “so far gone” that they don’t even realize anything’s wrong with them, or in any case have no one really to blame for their misfortune.
The case with spinal cord injuries, though, is much different. A lot of the patients dealing with that have become that way because they’d decided to ride a motorcycle or go skydiving, and subsequently broke their spinal cords in some way. Those with incomplete breaks can recuperate a good deal of their function, but the ones with total breaks, not. In addition to the guilt they feel for “bringing this upon themselves,” the singles tend to also start thinking things like, “Who will love me now?” Spinal cord injury patients are all completely intact cerebrally and fully cognizant of their situations, and therefore most of them are on antidepressants.
When I learned this I was dumbfounded. What must that be like? To lose a part of you that you really can’t just regenerate? It’s similar to imagining the loss of a limb, and I — more often than I wish — am very much humbled by stories of people who are in situations far worse than mine. As my best friend once very frankly said to me, rather dryly, “No matter how bad you’ve got it, there’s always someone who’s had it worse than you.”
So before anyone accuses me of crying a river about what’s happened to me, I want it known that I’m well aware of, and even thankful for, the second chance I’ve been offered toward healing. So I encourage any of you going through a similar journey, to give thanks as well.
Someone who is going through this type of major life change is more in need of major acts of love and compassion than they would without it. There is, however, a part of this that isn’t so obvious — the careful alienation that is sometimes a natural response from others, something that often occurs to people whose disabilities are much more evident, such as those in wheelchairs.
I personally experienced this in an awful way when my family and best friend took me out to have lunch while I was in the hospital one day. I was still in a wheelchair and wearing a helmet. The hostess at the restaurant treated me as though I were slow and incapable of speaking for myself, never looking me in the eye and asking others what I wanted to order. At the time I was furious with her.
I have a friend who has cerebral palsy and uses a wheelchair. I also used to work with another girl in a chair who had severe motor dysfunction, and both of them have shared appalling stories of the discrimination they’ve endured in their lives merely because they are not physically capable of moving around on their own two feet. Both are intelligent, bright people, and this is an important fact I want no one to forget —
No matter how much physical difficulty someone has (whether temporary or not), it does not negate the fact that (s)he is a human being.
Anyway, this also applies to what I refer to as “reverse discrimination.” Occasionally people feel the need to overcompensate for what they see. They give people with purely physical disabilities extra liberties simply based on that. And that’s wrong, because all we want is to be seen as equal to everyone else. If the mind’s fully intact, then so should your respect for that person, as they are who they are, no less, no more.
I knew a professor who would grant a legally blind student seemingly limitless extensions to take his exams whenever he wanted, which I felt was unfair. Because it was — the fact that he was legally blind had absolutely nothing to do with his ability to prepare for exams and quizzes (in fact, this kid was better prepared than 99% of our classmates, including me!). Sure, to give an extension because you clearly require more time due to the constraints of your disability is legit. But be careful in your attempts at compassion, for sometimes it can cross into the boundary of undue favoritism.
I also once knew a blind guy who abused his blindness and touched people in places they should not have been touched while working on getting his massage therapy license. The girl I know that he did this to (who might not have been the only one) kept her mouth shut to everyone but me simply because he was blind. So remember — these are human beings. There are also those who would take advantage of their disability and your compassion for it.
I’m currently writing a book — a memoir exploring the facets of disability acquisition — in attempts to educate people and take them outside of their ignorance (which is obviously not their fault, but only natural if this type of thing is foreign to your life). I don’t in any way believe that as a result of reading my words people will be able to claim total experience by proxy, but I do hope to spread at least a “viral” effect of awareness on the subject. Know that this kind of thing changes you, but is never intentionally put upon you. And please, be kind, and try to understand it from our point of view.
As a note to the patients of acquired disability: remember, too, that it is important to be compassionate and gentle with yourself. A lot of people I’ve seen in therapy are harsh on themselves, saying things like, “Oh, I can’t” or “That was pathetic.” This sort of negative self-talk tends to come true, so speak what you want. I’ve personally found results much more forthcoming when I’ve looked at myself lovingly. It sounds silly, but sometimes I will encourage my hand (for example) by saying things like, “Come on, baby, you can do it. Yesss, there you go. You’re doing great!” (Obviously not too loudly.) But it works — try it.
Also, with regards to the less-than-ideal reactions of others. When they treat you like they’re better than you are, or with whatever other type of disrespect, keep in mind that you are living something they could never know without experiencing it firsthand. Try to remember what you were like prior to the onset of your condition. Would you have been appropriately empathetic to someone like you now? If so, kudos to you, but if not, use that knowledge to try and forgive that person. It’s only the result of ignorance. Compassion is a two-way street.
PS. Upon completion of this post, I chipped what seems like my billionth plate. In inevitable cases where your loved one accidentally drops and makes a huge mess of something breakable, please gather the patience to help them without making a big deal out of it. It’s embarrassing and frustrating enough for them to have done it in the first place, so please. Just help.
To our healing,