1. You look Great (when we don’t):
This can be perceived as pity, especially if we’re alert and oriented enough to detect it. It’s not that we don’t appreciate the fact that you’re trying to be kind. It’s just normally, we would put more effort into our appearance than just waking up and sitting around in a hospital gown covered with mouthwash from the swish and swallow the nurse had us do earlier. I don’t remember feeling self-conscious until the day I was being transferred from the hospital to rehab. As I was being lifted into the ambulance, I remember catching a glimpse of myself in the mirror by the exit doors and I was mortified. I looked like the young girl from the original Exorcist movie and that’s an understatement. The gentleman who was getting me into the ambulance saw the color go out of my face and said “awe, honey. It’s not that bad. You look fine.” I would have honestly preferred cousin It from the Adams Family over the girl from Exorcist, only because It’s hair was smooth as if it was just treated with a keratin blow out. Just saying, priorities.
2. No, You don’t look Different to Me
This was in response to my growing concern that my face along with the rest of me was starting to blow up from the high dose steroids, commonly known as “Moon Facies”. Obviously, when it’s happening, which is over a long period of time, the patient doesn’t notice right away so I didn’t expect my family and friends to either. But eventually, when I did start to notice, I was frustrated when people would say I don’t notice anything different, you look fine or you look the same. I tried to explain to a friend visiting me in rehab and the only way I could describe it is that my face looked like it ate my previous face. When everyone kept telling me I look like my normal self, it made me feel HORRIBLE. I kept thinking, OMG, is this what I look like all the time? Luckily, one of my closest friends, kept it real and was the first one who basically said, “No girl, you have moon facies.” I was all golden after that.
3. You Should Really Try to Do More so Your Progress is not Stagnant.
All of a sudden, everyone becomes an expert after YOU have surgery. This statement in particular was one of the most frustrating. I’m a pretty positive person but losing function on my dominant side and spending all day trying to compensate with its counterpart was emotionally, mentally, and physically frustrating. Then add the unsolicited advice or commentary that I am not pushing myself to my potential was not only diminishing my efforts and the improvement I was making but also my spirit and self-esteem. I literally would stay up late after everyone left and try to move my right side or stare at my hand, leg, and foot and think please move, if only a little. And that was devastating to an already bruised psyche, until it finally happened.
4. So are you ever going to be normal again?
I was asked this ALL the time, just yesterday in fact by someone close to me. This to me is as bad as asking, “when do the doctors think this will be fixed?” As a clinician, I can assure you, just like all five fingers on your hand are different from one another, so are patients and therefore, recovery is extremely unpredictable. When I was first told in the hospital that I was paralyzed, my surgeon honestly believed and convinced me as well that the swelling would diminish and I would awaken one day and be back to baseline. So naturally, I woke up EVERY single day for three weeks and the first thing I would check is if I could move my right side. And every day, I would be crushed to find out I couldn’t. I kept thinking if not today, then maybe tomorrow and it was a vicious cycle. One day, I decided that I would no longer think that it would be a miracle overnight and the sooner I realize this will be a process for a “while”, the better I’ll be. It was only until that moment, that I felt a tremendous burden was lifted off my shoulders and now I still take it “one day at a time”.
5. You should be grateful, just look at so and so.
This was definitely from a positive place as well but not always well received. Even though I tried to remain optimistic and keep moving forward, there were and are days where I will wake up and I’m in a funk. I feel like the donkey from Winnie the Pooh, Eyeore, “woe is me”. This can happen to anyone on a good day so certainly after surgery it would not be uncommon. And especially earlier on, the last thing I wanted to hear was about someone else’s hardship. Sometimes, it would add on and make me feel worse and worry about them too.
6. Maybe you’ll meet someone in rehab.
To put it in context, I was in the stroke unit and I was a 3 person assist for transfers, bathing, and how do I say this delicately, using the “powder” room. Even in this condition, there were people who unfortunately were worse off than I was. Indeed, a love connection was neither expected, pursued, nor had. That storyline is cute in Lifetime movies only, thank you, or rare real life stories in something like Glamour magazine articles. Maybe it’s just my luck or unrealistic expectations that one day I’ll meet a younger version of Liam Neeson. Hey, stranger things have happened, but I digress.
7. You should enjoy your time off from working and look at this like a vacation.
Truthfully, I probably was naive enough to say that to someone before too. But let me tell you about my vacation. Once a week I would be startled awake at 3am not because a tropical breeze blew open the windows to my luxury suite, but because the tourniquet was keeping a choke hold on my arm so that the tech could draw labs (blood). And then, I would stay wide awake until 6am when I would have to use the “powder” room like clockwork. Because I couldn’t just get up and go, I’d have to page the nurse’s station and wait for 3 people to come all while struggling to control my bladder, the urge was more intense after surgery for some reason. They, the nurses, would then help lift me up, put me in the wheelchair and transport me to the “powder” room and in the end, I’d have to page them again so they could lift me up and put me on the wheelchair to bring me out. After this morning ritual, I’d have a day of PT, OT, and speech therapy where I would have to learn how to solve basic math problems of addition and subtraction, test if I could remember words like colors, objects, and pets. But, mostly I would spend a great deal of the time struggling emotionally with why I was having so much difficulty completing these easy tasks. So no, that is not a vacation. Don’t get me wrong, the resources and assistance I had were a blessing and I mean no disrespect for I am very grateful, but let me be clear, it was not a vacation and I certainly wouldn't have bought a timeshare if it were.
All of these commonly used statements came from a good place but hopefully I was able to illustrate in this article, the effects it had on me as I was recovering from a traumatic event in my life. If anything, my hope is that perhaps someone else recovering from something in their life may not have to deal with these emotions too.