I’ve been invited to get involved in another initiative. This one, arranged by a non-for-profit group called Erasing the Distance (which focuses on spreading awareness of mental illness), will manifest in a theater production called Falling Petals. The show concentrates on disabilities in particular, and a girl I know (who will guest-write for the blog soon — for real!) who’s involved in the project invited me to share my story with them.
I interviewed with them two days ago over the phone (those of you far away may not have heard about the massive blizzard that hit Chicagoland Tuesday afternoon, essentially trapping all human beings in the area indoors for twenty-four hours), and speaking with the outreach director was really thought-provoking. They are performing the show a month from now, which is kind of crazy, because they only decided to use my story yesterday(!).
Now, I’m kind of cheating on this post because I told the director of the show that I would e-mail her additional thoughts on five “scenes,” or aspects of disability acquisition, to provide even more material in addition to the hour-plus worth of rambling I provided the other day. Ha. So, after pounding out a hella long e-mail at three AM, I’d like to share with you what I wrote, mainly because not nearly all of this will be included in the monologue telling my story in the show, and I don’t want my words wasted! 😉
By the way, if you are in the Chicago area and interested in seeing the production, please don’t hesitate to contact me for information, or go to this site to read about Falling Petals.
You’ll find that this is pretty much a summary of a lot of things I’ve covered in this blog in the past, so please excuse the repetition. However, I don’t think there’s harm in reviewing. Here it is:
Obviously, when you have half your body all of a sudden rendered useless, it’s not just that you can’t walk or run anymore. You can’t take care of yourself; you are dependent on others again as though you were once again a baby. And that is humbling, especially if you were previously athletic and physically expressive and very capable of taking care of yourself. Countless people you don’t know (hospital staff: doctors, nurses) and people you do (family members, sometimes friends) will see you naked. The entire concept of your body is compromised; it no longer responds the way you were used to it responding from the day you were born. You’re like a baby, but less, a kind of baby-minus, because a baby can move all four limbs and feel properly. Yours can no longer do that. Through therapy you discover that all the activities you used to do with nary a thought are far more complex than you ever cared to consider: Tying your hair back, closing a button, putting on a sock all used to require two hands, and you now have to learn new ways to do all of these tasks — or rely on other people to do them for you. You’re not allowed to go to the bathroom by yourself because your caretakers are afraid you might fall and hurt yourself. Your body is lazy, defeated. And for some reason your mind just accepts it without question. It just is.
You have to remember even your paralyzed limbs are still alive, as you’ll need to wash them — otherwise they’ll start to smell. They’re heavy, though; you never really think about the weight of a leg or an arm until you have to pick up or move them with your own hand. You easily learn through time that there is no such thing as a simple movement, especially when it comes to your hand. That fine motor movement is the most stubborn to return, and in my case, it was even more exacerbated by the fact that I had lost most of the sensation in my left hand, so I had to (and still have to) rely on eyesight to know what it is I’m trying to do with my fingers or what it is I’m holding in my hand. The key to therapy is repetition, repetition, repetition. Wash, rinse, and repeat. There is nothing more mentally exhausting than focusing on moving something just right. It’s as though your left side is in a total haze; its muscle memories completely erased. Yet, fascinatingly, when you imagine what it was like to move in a certain way, it will try.
Anger with what you think your body ought to be able to do is readily accessible: People often get disproportionately frustrated with what seems like mere stubbornness; after years of rehab and self-improvement I now have learned you must not give in to that anger. It’s misplaced, and all you’re doing is scapegoating your body for the misfortune you’ve suffered. Your body, your brain, are doing the best they can. Being gentle, loving, and understanding with yourself is key.
It is so easy to get frustrated with your situation. You’ll easily go to sleep at nine o’clock because you’re simply drained from trying to rewire your brain for hours and hours during the day. And twelve hours later when the nurses come to wake you you’re still tired. Your brain is recovering from attack; it needs its rest. For me, the way hospital staff was always around to physically tend to me and the way certain physicians or therapists interacted with me to lift my spirits inspired great amounts of gratitude. I saw a new kind of beauty in their profession; I had previously never given a second thought to the world of medicine and all of a sudden it was all I could think I wanted to do in my life. I felt something like this couldn’t have happened without a reason. It opened my eyes to a world that overwhelmed me in its love for mankind and our well-being.
On the flip side, there were of course times when comparisons to how I used to be would revisit me and momentarily bring me pain and sadness. Mentioning this to my mother would make her cry. And I suspect my limbic system was affected by the brain surgery, as anything could make me cry (when before I was somewhat “constipated” in that sense and rarely ever shed a tear) or laugh uncontrollably.
Humor was a great coping mechanism. It was a good way to keep spirits up, by being silly with my therapists or doctors. I think it was the ability to make light of the situation and not focus too long on how unfortunate it was to have to suffer through this that made such a long hospital stay bearable. I was in the hospital from 7 July to 25 September, and it was in part thanks to this lighthearted attitude that I didn’t lapse into a funk.
Lastly, your mental state is the most important indicator of your recovery. Being defeated/giving up is the worst thing you can do. Being motivated to keep going is your lifeline.
It is tremendously important to have faith in a circumstance like this. Whether it be in God, fate, your surgeon, or your brain’s amazing ability to reconstruct itself, you must know that there is something greater than what you’re conscious of at work here. The experience also undoubtedly makes you stronger. And when a person is “strong,” we’re not talking about physical strength; we’re referring to a strength in spirit. You’re alive! Against the odds! And you’ve been given a chance to bounce back.
Additionally, at least in my case, there’s a part of me that rejects the “science” behind what the doctors say: They’ve told me both “You can’t get it all back” and “The more you do, the more you’ll get back.” My heart tells me that somewhere the two must intersect — and so, call it the tortured artist driven by the unrelenting perfectionist in me that forces me to ignore “the statistics,” I choose to believe that I can and will recover 100%. To believe as much in the face of what is “likely” is a great leap of faith and strength, in my opinion. (As an aside, a neuropsychologist once told me I would achieve much greater peace of mind if I just accepted my condition as-is, but I see that as a bit defeatist. After all, I’m not missing any body parts; I’m just rewriting the pieces to a greater story.)
After you’ve been affected by this kind of condition, your lifestyle greatly changes. This requires everyone you know to show his true colors. Those who were closest to you will strengthen their bonds to you; they’ll take care of you. They’ll defend you. They’ll fly from far away to come visit you. Pray for you. On the other hand, some friends will unfortunately show their dimmer colors and fade out of your life, creating a distance between you because you’ve become inconvenient. You’ll learn, slowly but surely, that you no longer have the tolerance for those kinds of fairweather friends that are not there for you when you most need them.
Some people will forge connections with you because you share a common story — often friends you make in therapy or friends who have close family members who have been through something similar — or connect with you because of some psychological need for victimization. This is one of the worst scenarios. I personally became involved with a guy, whom I understood to be one of the most beautiful people I’d ever known, who was — it was later revealed as I reflected back on our relationship — attracted to the tragedy of the situation. Things that he had not deserved had occurred in his past that he hadn’t yet dealt with, so my not deserving my sudden disability was greatly seductive to him. Because he was so good at disguising this victimized connection as a romantic one, I fell greatly and seemingly irrevocably in love with him. As a result, I lost nearly three years of myself devoted to someone who in the end turned out not big and beautiful enough to accept me for who I was. He made the mistake of seeing me as my physical condition as opposed to the woman I was encased in it. And it began to tax him. He would blame me for not being able to dash out of pouring rain with him or for almost missing our stop on the train because I hadn’t gotten up early enough. My iron-grip love for him — and lack of respect for myself — wrote off this behavior as “tough love,” but in retrospect that is malarkey. I should have stood up for myself and told him it wasn’t my fault. That I wasn’t not running to anger him. I should have pointed out that I felt enough of a burden from bringing inconvenience and delay to myself and to those around me without him throwing — no, rubbing — salt into the wound. I cannot concisely express in words how profoundly this relationship hurt me, but as a result of it I sort of died — in every way but biologically — and perhaps it wasn’t due to the disability but rather to my psychological faculties, but the disability was ultimately what rendered our union impossible. He didn’t see what should have been blindingly apparent: me. I believe I radiate, that my soul sings, and transcend my physical body. To be with someone is partly to share a combined energy with them, and because he connected with me initially on a weaker level — one of victimization and “why me?” — it gradually snuffed out. Better this way, of course, as I am clearly better than all of that. Like a phoenix, I rose again to live a new life. My primary relationship is with myself, and in learning to love myself again and not stand for that kind of abuse anymore, I have been able to take the steps to move on.
Part of the fear you develop when you acquire a disability is the fear of separating yourself from the herd — having been born “part of the herd,” so to speak, you are only too familiar with the way most people view the disabled, as being part of The Other. We fear what we don’t understand, and so as a sort of defense mechanism I’ve developed this system of making new friends completely devoid of telling them about what I’ve been through. I prefer that they get to know me first and later find out that I happen to “come with” an uncommon backstory. It may be a bit “bait and switch,” but only if the person in question is ignorant enough to believe that my bait (“I’m a cool girl to know”) is different from the switch.
Some friends will not adjust their behavior to your new circumstances, which is something I don’t suffer gladly now, since a friendship should not be based on resentment, which inevitably accumulates on both ends after a while. It’s also tough now because I’m at a point in my healing where the disability is not always immediately apparent — so it is easy for others to forget — and because you’ll never know what it feels like until you’ve personally been through it, there is no way for others to fully comprehend why something may be difficult for me while something else may seem easy. Communication, therefore, is key. It’s a delicate balance between my expecting them to slow down for me and their expecting me to speak up when I need them to do something different.
A suitable partner must at the very least accept you as you are, and this is regardless of disability. As I’ve said, though, having the disability in a way acts as a screening process for men who are actually shallow boys, or like my ex, weaker and toxic for you. I am so thankful to have been able to find myself now with someone who seems a boy (he is younger than me) but is actually more a man than I initially suspected. This showed in the way he would always (without my asking) hang back to walk with me whenever our group of friends headed somewhere and I lagged behind. Or the way he always takes care of me, anticipating my needs before they arrive, without complaint or resentment, for which I am infinitely thankful. And he is humble to an extent that even I don’t understand; he knows his worth, but he’ll never use it against me. Any woman deserves a partner who shines with her rather than in spite of her, so it is important for acceptance to be prerequisite number one and mutual respect a close second.
Not to cry you a river, but I had it really good before the AVM rupture. I was healthy-healthy-healthy, never even had strep or the flu. I had played volleyball and track, I was a dancer, a gymnast, an actress. I literally climbed the walls of my dorm as a freshman at U of I Champaign. I loved shopping. I easily spoke to new people and made new friends — admittedly, most of them male. Life was good. But the downside of all this happy-go-luckiness was that I was superficial and egotistical. I wasn’t fragile, but I was at the same time harmless yet harsh. I didn’t always think very deeply, yet I had very high self-esteem, due to external validation. I got a lot of male attention so I must have been attractive. (I grew up largely dorky-looking until I was seventeen so I’d had time to develop good fashion sense.) I was always the girl with “so much potential,” but I was also driven.
Anyway, they say the more you have, the more you have to lose. In the matter of, what, a few seconds? Minutes? All the neurological programming stored in my brain from my toddler years was overridden. Forget climbing walls; I couldn’t even sit up. As aforementioned, the hospital experience is nothing if not a lesson in HUMILITY. At nineteen? Everyone believes himself to be invincible. Guess what; you’re not.
And when your physical capabilities are a large part of where your pride lies, that ego just fizzles away. It’s still there, to be sure, but it cowers, not sure if it can come out again. (Perhaps that drive I have to get it all back is also in part due to that.)
Am I still attractive? I still have more or less the same face, even if it’s a bit asymmetrical. (They placed my bone flap back into my skull during the second surgery, but — as anticipated — it wouldn’t fit back in place perfectly anymore due to contraction of the skull while it was missing. So it has been fastened into place by three titanium plates. As a result, there is a slight groove on the right end of my forehead.) What about when I used to occasionally get seizures? Won’t that freak a potential partner out? (My ex used to complain about the way the anti-seizure medication affected my breath, encouraging me to stop taking it — which did come back and bite him in the ass, of course.) What about the way I walk? Also, it is a tremendous blow to the ego that I still can’t wear heels. (If I hadn’t had the stroke I likely would hardly be seen without them.)
It was a HUGE milestone when I was able to wean myself off the ankle-foot orthotic (AFO), which condemned me to a life of gym shoes. Without it, I could wear short skirts again and normal shoes! Not flip flops initially, but smaller, sleeker sneakers and ballet flats. Boots with a slight incline.
Does this all sound very superficial? Of course it does. But aesthetic pride was a large part of my life before. And when it’s taken away, your perception of yourself goes into shock. So you begin to compensate.
After a semester off of school to focus on rehab, I forced my parents to let me go back to university (they’d wanted me to take the year off.) My first semester back, I successfully “nerded up”: I got a 4.0 GPA for the first time. (What did you know, I met that proverbial “potential” for once!)
Because I had thought I’d be in Florence my entire sophomore year, I simply asked the school there to postpone my enrollment till the next year. I managed to study abroad not once, but twice: for the year in Florence, Italy in 2004-2005, during which I regained much of my physical gait back and the “attractiveness factor” (naturally, Italian men being what they are), and for another eight months in Bologna, Italy in 2007.
I certainly still struggle with self-image to this day. As a result of being forced into The Other, I’ve become far more introverted than I ever was before. I don’t much go dancing anymore (even though I still think of myself as a dancer and do it all the time in the privacy of my bedroom), I don’t do theatre apart from watching it, and I still hate my non-use of the bajillion pairs of high heels sitting in wait in my closet. My body is ever so slightly asymmetrical (different sized limbs, a sublexed shoulder, a hiding clavicle, an anomalous gait), which ceaselessly annoys me. Do I blame myself? No. But I do push myself.
The experience has inspired endless reflection and introspection, forcing me to know myself and the world a bit better. I think it has made me a better person, but also a slightly more fearful one. The fears I’ve developed in response to what I’ve lived through (both pre- and post-stroke), but it is always a journey, so with awareness and more just daily living I continue to grow and heal every day.
To our healing,