Monday, June 5, 2017

The s-word and the conversation I am dreading

It's the middle of the afternoon, sometime toward the end of March. I am sitting on the piano bench beside the girl I tutor, helping her cram for her music test. In the next room over, one open door between us, my mom is talking on the phone with my uncle. Her conversation is loud enough that we could maybe hear what she is saying if we paused, and yet the notes from the piano mingle with her words, blurring them beyond comprehension.

We coexist - her words, our notes. My fingers slide over the keys as I demonstrate how to play a scale.

"Now you try," I tell my student, folding my hands in my lap. Her fingers fumble to replace mine on the keyboard and attempt to replicate my movements.

She plays, misses a black key. We pause.

"Almost," I say, "but not quite. Here, I'll show you again, it's -"

There's a moment of silence as my hands find their place on the keys again...just a few seconds of quiet, but it's a wide enough space that the words from my mom's conversation are clear. We both hear them, and two words in particular stand out from the rest.

The first word? My name. The second: surgery.

My student turns to me, alarmed. "You're having SURGERY?" she says, her voice an uncomfortable mixture of pity and incredulity.

I feel the heat rush to my face.

"Oh, yes, I had surgery last year, remember? To take the pins out of my leg," I say.

"You did?"

"Yes, don't you remember? I told you. I definitely told you!" My voice is playful, gently chiding her for her forgetfulness, but my insides are churning, because I know that this is not the surgery my mom is speaking of. But I don't want to tell this girl. Not now. Not yet. Not ever.

And - yes - truly, I had told her about my last surgery. I mentioned it with a single sentence, months after it happened. Somehow, it's easier to talk about events that have already occurred, after they've been stripped of the risks and the maybe's and the what if's. And once they're past-tense, there's less room for pity.

But now...at all once....my mother's words no longer coexist with our music. I am wishing that she would stop talking, wishing wishing wishing that this part of my story would stop spilling through that open door and into this room.

My student plays the scale again, misses the note again. Her eyes seem far away, and I wonder if she's trying to listen to more of my mom's words. In between the notes on the piano, I catch snippets of the conversation, phrases leaping out at me, jolting me, misplaced sharps and flats. "Spinal cord nerves" - "St. Louis" - "this summer." 

I force myself back to this moment, back to the piano keys in front of us.

A few minutes later, my student turns to me with a look of dawning realization. "Ohhh, I remember!" she exclaims, stumbling through the scale again.

"Yes, it's an F-sharp that you're forgetting," I say.

She stares at me, confused, then laughs. "No, no, not that. I remember that you told me you had surgery last summer."

~

More than two months later, I am facing the uncomfortable reality that I have to tell her for real this time. My student's final exams are scheduled soon before we leave for my surgery, and I can't afford to get sick beforehand. An illness before surgery might mean that I'd have to reschedule, which would be a logistical nightmare on too many levels to count.

So to be safe, I have to cancel the last few days of my tutoring. My student has other resources and other people she could probably go to for help, but I have to tell her soon so that she can make these alternate arrangements.

But I'm dreading it.

I wish so badly that I could skip all the details and just tell her that I have to cancel because I have a trip coming up and I don't want to get sick beforehand...but how selfish does THAT sound? ("I'm sorry, I'm abandoning you for your final exams because I don't want to get sick before my vacation!") No, there's no getting around it....I have to use the "surgery" word.

Somehow....somehow, I have to gather the courage to tell her, and SOON. I'm thinking that maybe I'll text her about it in advance so that we can break the ice, and then we can talk about it more in person.

But I'm afraid. I'm afraid that when I tell her, my words will be rushed and shaky and uncertain. I'm afraid that she'll hear the word "surgery" and panic, looking at me with that pity in her eyes. I'm afraid that she'll panic for herself, too, once she knows that I won't be able to help her study for final exams. And most of all, I'm afraid she'll ask questions...that she'll want to know details about the surgery itself, which I don't feel comfortable sharing with her. I can talk to her about musical scales and muscle anatomy and parabolas and systems of equations...but not this. Not cerebral palsy, not spasticity, not hospitals and surgeries and rehab and recovery.

Not this.

15 comments:

  1. K-
    Fear is normal. It makes sense that your voice could betray your anxiety about your surgery. You cannot control your student's reaction, and that is terrifying. However, the way you present the concept to the person you're telling CAN influence their reaction.

    Something like:

    "So, I just wanted you know that I'll be having surgery to help me walk better. My doctor wants me as isolated as possible beforehand, so that I stay healthy. This means that I will not be available to help you study for your exams. I wanted you to know ahead of time, so that you can make other arrangements."

    Sending all the good vibes your way!

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    1. Thank you Tara! <3 Your encouragement and good vibes mean so much!

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  2. Your writing remains viscerally evocative. I always enjoy reading what you write because you transport me right there with you.

    I wish I was right there with you. But we are there in spirit.

    Practice what you want to say, so at least you'll have an aspect that's within your control.

    Sending lots of love your way <3

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    1. Thank you Tonia!! I always appreciate your advice so much, and I'm so thankful for all your support. Sending lots of love right back at you!

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  3. Our son had the same surgery almost 3 years ago and is doing so well. I wish you the best of luck!

    And I wanted to add... sometimes when I'm stressing out about something I try to picture my life 1 year from now and wonder if my stress is warranted. I'm sure your student will understand the circumstances and it will be a good lesson for her that ultimately we're the only ones responsible for our test preparedness. But I would think with today's technology maybe you can help her out over FaceTime or Skype?

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    1. Hi Alison! So glad to hear that your son is doing well after SDR!

      I love that technique...it really does help put things into perspective! Thank you! We *have* had phone call sessions before - never Skype or FaceTime, but that's a good idea! I told her last night that I wouldn't be available for the whole month, and you're right...it wasn't as difficult as I was expecting! I actually didn't tell her the reason why (although maybe I will if it comes up as the date gets closer), but she was ok. :) We came up with a study plan to get things done a few days early, so hopefully it all works out!

      Thank you so much for stopping by and chiming in. :)

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  4. Hi K,
    So nice to get an update from you! I'm sorry I haven't emailed in awhile. I was swamped with finals and film production. I completely understand why you are afraid. Surgery and all that comes with it is scary. My advice to you is just to be honest with her. Here's why: If you hold back, your student is more likely to be afraid. If you are open and direct it is more likely she will simply accept it and if she prays, perhaps she will see it in her heart to pray for you and support you during recovery. Your surgery is a chance for you to teach her that there are more important and more stressful things than tests in life. Chances are your student may face surgery at some point in her life and if she ever does she will think of you and that may make her less afraid later on. Surgery is very often a part of people's life whether they are disabled or not. You are also teaching her more of what life is like with a disability. In March I discovered one of my friends needed to have eye surgery because of diabetes, I was scared naturally, given this friend has many chronic health issues, but because he explained that it was for his own good and what the surgery was, I was more focused on assisting them rather than my own fear. Knowing what was happening to them stopped my brain from filling in details with my own morbid panicked ridden thoughts which were much,much worse than reality. At this point I have also had a few experiences with teachers and professors facing similar health procedures and usually what they would do is tell us exactly what was happening to them and why(recently met a teacher who had brain surgery for pete sake!) and then would show us various websites that we could use that were related to what they were teaching us until a substitute or replacement teacher or tutor could take over. Once we(my classmates and I) knew what our teachers were facing we placed no judgement on them and we felt the same way about them that we always did. Remember: Cerebral Palsy is NOT a bad word(s)!!! Surgery is scary but it does not have to be a negative thing! Show your student that by your actions. Say something like "I need to have a surgery to help me walk and prevent pain, and I need to stay healthy before the surgery so I can't see you for tutoring but here's some websites that might help you study, and I'll be thinking of you. I'm telling you this now so you can look for another tutor in time, Please know that I would not normally do this to you before your finals." I understand you do not want to share details, that is your private business. If she asks for details simply say "It's hard for me to explain the details. Nothing personal. Perhaps I will be able to discuss it another time. Thank you for asking though". That way if she ever does have questions that you become comfortable discussing later you have left the conversation open and you have shown her disability isn't a taboo to discuss. Remember also that the worry you may hear in your students' voice is because she cares about you enough to worry and that is beautiful. Please let me know if I can help in any way??? xo.

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    1. Hey Margot! Right back at you - will definitely email you again soon! I totally understand the feeling of being swamped haha.

      Thank you so much for your advice! I do think you've made some really important points about the benefits of sharing. Those are some of the reasons I'm thinking of mentioning my surgery on my Facebook profile a couple days before we leave on our trip.

      And yes, I know that "cerebral palsy" isn't a bad word - and I definitely do not think of it as one - but it's also not something that I always feel comfortable talking about! :) Working on that.

      I also really like your point about presenting the surgery in a positive light, and that point of view actually *does* reflect my true feelings about it! I'm nervous, for sure, but I'm also so excited to potentially improve my health and mobility.

      I ended up simply telling her last night that I wouldn't be available past a certain date. I didn't make a huge deal of it, and we didn't discuss reasons, so at this time she still doesn't know about my surgery. The conversation went fine, and we came up with a plan to tackle her studying a few days earlier to accommodate my schedule, so it sounds like all will be ok.

      I just didn't feel comfortable disclosing just yet - and that doesn't mean I never will...I might tell her about it later next week, as the date gets closer, or maybe later in the summer/fall when everything is said and done.

      As always, thank you for your advice and support, and for taking the time to stop by and read my blog!

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    2. Thanks K! I look forward to future emails! I'm so glad you told her you would not be available and are helping her plan ahead! Very smart! It's particularly good that you did not make a huge deal of it which will put her at ease. Sometimes if you are at ease people don't get worried and don't really ask for details,at least not right away. I think you should indeed disclose in some way as it gets closer though! I also think that you need to keep working on talking about CP since whether we like it or not CP is here to stay until we die so there will always be situations where we have to disclose out of need. I'm not a therapist or expert but I would try to get to the root of what stops you from talking about CP and face that head on. You're very welcome!

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  5. Hi again, Well just discovered someone else I know is having surgery later this month. Surgery is a common thing so once again please be open and honest with your student.

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  6. Hey K, Just curious, will you be posting updates? Would love to hear how it goes for you/how the recovery process goes. I've had it in the back of my mind but I feel like having a concrete experience would help me make a better decision in the future.

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    1. Yes, I will definitely keep you guys updated!! :) I plan to be fairly detailed with my updates, but if there's anything you're wondering as you're reading, feel free to comment or send me an email with questions.

      Also - if you're over the age of 18, we have a secret group on Facebook for adults with CP who are considering SDR or who have had it. It's completely private - nobody can even see that the group exists if they haven't been added to it - and it's been an amazing resource for me. If you're over the age of 18 and this sounds like it might be helpful for you, feel free to send me an email (transcendingcp@gmail.com) with a link to your Facebook profile and I'll add you in. :)

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  7. Surgery can be scary and telling people you have to have it can be scary too, especially when it's not common. I know before I had my surgery (totally different) it was hard to tell people I wasn't especially close to because I was worried I would gross them out and it just felt too personal. Even now, because there are still dietary restrictions, I sometimes hate having to explain it because of pity. I think as disabled people, pity is such a common reaction to us, that we hate being in situations that could cause even more pity. Best of luck with surgery K!

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    1. YES, Kathryn...those are my feelings too! I've told several people (mostly close friends) about my surgery but it really does feel like an intensely personal thing, and it's a difficult subject for me to bring up. And for sure, I don't want any more pity! Thank you for weighing in to tell me that I'm not alone in this! :)

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  8. Hi K!
    I'm guessing you may have had whatever conversation was needed now... I couldn't help thinking back to a year and a half ago when I had to stop tutoring lessons with my math students in November, only a month from their exams, due to my cancer diagnosis and upcoming surgery and treatments. I was a little nervous about what to say, but chose only to say that an urgent medical issue had come up, and that I would be needing to take some time off. I think I called each of the students before their final lesson, and let them know that I would still book one more, so we could at least have a closing session before saying goodbye. I found that by just explaining that an urgent medical issue had come up, they were respectful in not asking any further questions, and yet understood from what I had said, that I was doing everything I could to still give them as much as I was able before hand. Please don't feel obliged to give any more personal information than what you're comfortable with. It is completely professional and appropriate not to give too many details.

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Please feel free to leave a comment. I would love to hear from you. Thanks! :-)