Recovery is sweet.

I had my first real meltdown at the rehab center a couple weeks after the accident. It was early evening and Greg was sitting with me as I struggled to eat my dinner, some kind of tuna casserole that had been chopped up to accommodate my facial paralysis and milk with a straw for the same, and we were watching whatever horrible reality tv show my roommate had chosen at the loudest possible volume when I was absolutely overcome with grief. I started sobbing and barely choked out “what if I never smile again?” as Greg looked heartbroken and a little bewildered and from behind her curtain my elderly roommate quietly asked if I was ok. I didn’t let it last long. “NO NO NO I can’t do this. I need to eat. I need to heal.”

Recovery has been like a triage of priorities. For the first couple weeks my facial paralysis didn’t rate very high. The pain in the rest of my body was beyond anything I’ve ever experienced, I was unable to move, I couldn’t sit up, and every day I was put through some horrific test or procedure that left me physically spent and emotionally numb. But as my body started to heal, my facial paralysis took center stage as the most traumatic part of this whole experience.

Difficulty with eating was the first thing I noticed. You have no idea how many muscles you have inside your mouth until half of them are gone. I could only chew on the right side, and if any food ever made it to the left side it wasn’t just inconvenient it was dangerous, since there weren’t any functional muscles there to keep it from sliding right down my throat. The hospital never did get it. I begged them to put me on a liquid diet for days and they kept sending up food I couldn’t chew, and I couldn’t even cut it up because my clavicle had gotten so floppy and painful that I could barely move my left arm. They kept giving me food that was dangerously high in sugars too, even though I was on medication that made my blood sugar spike, but that’s a whole other story. I think I finally got soup on my last day in the hospital. The food at the rehab center was much better and they were really mindful of my disability. It was sort of a fun game to try to figure out what my chopped up mash had been before being chopped up and mashed. But it was always healthy and I was physically able to eat it. You really learn to appreciate the little things like that.

The hospital and the rehab center both had deplorable hygiene standards, which is also another story, but it meant it took me awhile to figure out how much my paralysis affected brushing my teeth. The first time I tried it I suddenly realized I couldn’t swish water around in my mouth, and I couldn’t spit. And I couldn’t apply lip balm the way we’re all used to. I discovered that I couldn’t drink out of a regular glass on one of my first nights in the rehab center, when I took a sip of water in the glass that came with dinner and didn’t expect it to dribble right down my chin. I became fanatical about having straws by my bedside at all times after that.

I was really lucky to get an appointment with one of the top neurotologists in the country, but he told us we had already missed the optimal window for surgical intervention so the best course of action was steroids and watchful waiting. He confirmed what our research had told us. The chances and length of recovery depend on the type of fracture, and whether the nerve was severed or compressed. I had a fracture that was apparently a little bit of both the usual types, and we were pretty sure my nerve was just compressed but there was no way to be certain. Even knowing that, he said recovery is not guaranteed because nerves are dicks and completely unpredictable and if I do recover it will take 6 months to a year and I shouldn’t expect to see any recovery at all for at least two months.

I started to get what I call “twingles” in my face at about a month and a half. Friends said my face was starting to look livelier, which was a sign that the underlying muscles were making connections with the nerve. My neurotologist sent me for an EMG, which is a brutal test where they stick needles in your muscles and move them all around to listen to their responsiveness. I wouldn’t get the results back for another month, and by then they wouldn’t matter. The day after my EMG I saw it. My cheek muscle moved. Just barely, almost imperceptibly, and you had to be in the right light to see it, but it was moving for sure. It seems like my smile recovered fairly quickly since then, although the muscles still aren’t connected properly so my smile sortof drags down at the edge a bit. I’m just so happy to be able to smile that I couldn’t care less. I don’t even care so much about my crooked teeth that I used to be embarrassed by. I realize now what a gift it is to be able to smile at all.

The rest of my face is taking a long time to recover and it’s not making connections as quickly as my smile did. I have difficulty talking, especially towards the end of very social days when my muscles tire. I still can’t furrow or raise my eyebrow. I can’t snarl or flare my nostril. I find all of that rather amusing and appropriate actually, that I can smile but I can’t look angry or sad. I can chew on my left side now, but I still have to be mindful of taking small bites and taking my time. The muscles in my mouth and lips on the left side are still weak so I can’t always keep my mouth closed when I chew. I feel a little like a dog when I eat sometimes, in the best possible way.

I have always had faith that I would recover. I remember telling the doctors in the first few days that when I laid down for awhile and then propped myself up my face felt a little bit lighter. They brushed it off as unrelated and psychosomatic in nature, but I think there was something to it. I did my research on scientific studies and alternative therapies alike, and as soon as I got home I started taking cod liver oil and vitamin b12 every day. And I watched for signs of recovery and rejoiced in every twingle. But at the same time I prepared myself for the worst. I reminded myself how lucky I am to be alive, and that I could live with a half-paralyzed face and I’d be just fine. At each stage of recovery I do the same. If it all stopped right now, I would be alright. I haven’t really been able to explain to some folks just how traumatic and devastating the whole thing has been, and how acceptance with each stage of recovery is a huge part of learning to be ok. I know the folks who say “you’re going to be just fine” or “you’re going to recover completely” mean well, and it’s hard to explain why it’s so aggravating and offensive. I don’t get to dismiss it all so easily, and I will never recover completely, but I know I’m going to be fine. I’m going to be fine even if my face stops recovering right now.

The paralysis also took away some of my taste sensation. Things tasted more bland to me for awhile, and it seemed like my sense of sweetness was most affected, and a bit of savory too. I’ve noticed things starting to taste better and more normal as I recover. I’m able to enjoy wine again, out of a regular glass, and things like cake and cookies are much more appetizing now. Nerves do funny things as they recover, and for weeks now as my ability to taste comes back I’ve had a constant sensation of sweetness. Not just when I eat, it’s there all the time. It’s amazing really. Think about the possible alternatives. It could be salty, bitter, or sour, but it’s not. Recovery is sweet.

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My left eye.

I haven’t written much about my accident or recovery because I’ve been so focused on getting better, I haven’t really wanted to think about it, and also partially because my lawyer warned me against talking about any of it online. In fact I was even advised to shut down my facebook account and to delete my entire website. I understand what they’re trying to do, and I’ll stay away from accounts of the accident or liability until they’ve duked it all out, but I don’t think there’s much harm in talking about my recovery. For those who visit this blog for art, please forgive the interruption. Art mingles with recovery in my life now, and so it shall be here too.

*****

Let’s start with my left eye.

It took awhile for me to realize that the left side of my face was paralyzed. Over the course of the next couple weeks after the accident, the timing of the onset of the paralysis became a topic of discussion and concern amongst my doctors. Could I or Greg remember whether the paralysis was instant or had it taken a few hours to set in? The former would indicate a severed nerve and a grim prognosis, while the latter would indicate a compressed nerve and something like a 50% chance of recovery. We both felt like the paralysis must not have been instant. Even in the chaos of the ER, wouldn’t we have noticed something of that magnitude? Even though my condition was critical and the doctors were solely focused on saving my life, wouldn’t they have noticed a symptom that resembles a stroke? I seem to remember talking to Greg in the ER without difficulty in my facial movements. But at the time I felt like I had hands all over me and there was the chest tube OMG THE CHEST TUBE and people sticking things in me and a million people talking to me all at once and overall general disorder, so am I remembering it correctly? I seem to remember that when the CHP officer took my statement while my head was being stapled shut I was only annoyed with his apparent lack of compassion but I wasn’t aware of any difficulty with speaking. Later that evening in the ICU, one of my doctors told me that I would need to protect my eye since it wasn’t closing, and I adamantly denied it. “See, I can close it” I said as I struggled to get it shut and then realized that something was very wrong.

I don’t remember when we learned about taping my eye shut. I was on so many drugs that the line between being awake and being asleep was a thin one. I do know that we hardly got any information from the doctors about how to manage the paralysis. Greg had to do his own research and find the right tape to use on my eye, and we started a little routine that we would stick to for many weeks to come. Every night before he left the hospital he would tape my eye shut. Sometimes I would leave it taped most of the next day because it was hard for me to tape it shut again and there was no napping without tape. When I finally took the tape off I would have double vision for awhile, and then eventually everything would go back to normal. It wasn’t until I got to the rehab center two weeks after the accident that my doctor there started to get insistent about getting a specialist to take a look at my eye.

I still wasn’t walking when I was transported to the first ophthalmologist. I was transported on a gurney in an ambulance, to an office that clearly never sees patients in my condition. They didn’t have room for my gurney so I was moved to a wheelchair, and then the exam chair. At that time moving and sitting were both excruciating. I explained my case to the assistant, and then waited and waited and waited some more for the doctor, out of my mind with pain in the stiff exam chair. The only helpful information I got from that visit was when he told me to keep my left eye over-medicated with drops or ointment or whatever works. “Don’t worry about seeing out of that eye for awhile” he said, right before he told me that he wanted me to see a plastic surgeon to have it SEWN SHUT IMMEDIATELY. I was in so much pain that it was hard to digest this rather devastating assessment, but once I was safely back in my bed at the rehab center and had a chance to mull it over with Greg, we decided it was completely absurd. Not only was I at that point DONE with medical procedures, it had never come up as an option in all of our research. Even the most severe cases, with no recovery of the nerve, are treated with small weights implanted into the eyelid. And that’s after waiting over a year to make sure all recovery is complete.

After I was out of rehab we got a second opinion and this ophthalmologist was much more reasonable. He confirmed everything we had learned so far. Keep the eye all lubed up, tape it shut at night, reassess in three months. If no improvement has been made after three months, we’ll talk about the next steps. I asked him about special dry-eye glasses I’d found online, which have silicone cups around the eyes to protect from sun and wind and he just shrugged and said I could try them. Yet another example of us having to do our own research, no doctor ever suggested these glasses. Once I got them and had them fitted with prescription transitions lenses, I knew they were one of the best things to happen to my recovery so far. Even with my left eye wide open for months, they’ve allowed me to go outside and do all the things I normally do, without fear of damaging my eye. I still use oodles of ointment, which makes my left eye constantly cloudy, but the consequences of that are minor compared to what life would be like if my eye were sewn shut.

My face has started to recover (I’ll get into more about the rest of my face and the complications and consequences of the paralysis in another post), but the nerves around my eyelid are taking forever. I can see and feel my eye trying to blink, and just recently I was able to force my eye all the way shut for the first time in months. But I can’t hold it there, and without the ability to blink I’m still a slave to my ointment and my goggle glasses. I still can’t see very well overall, which complicates everything I do. If I don’t get enough sleep it hurts for the entire day. It makes art hard, and seeing in weird lighting situations (like a recent trip to an aquarium) is really difficult. Working at the computer is stressful, and trying to see anything in detail is nearly impossible. Strangely enough, driving and riding my bike haven’t been all that challenging, I’m not really sure why.

I was feeling great about the recovery in my face so far, until I went to see a facial physical therapist. She was so blasé about the whole thing, acting as if my recovery wasn’t fast but rather fairly average or even slow. I’ve found this to be common amongst doctors who are used to treating Bell’s Palsy, which is related to my diagnosis of 7th Facial Nerve Palsy, but has a much better prognosis and shorter recovery time. She suggested that I should consider the eyelid weight implant right now. “It becomes a quality of life issue” she said when I asked her if I shouldn’t wait at least a year to see how far my recovery will go. And then she told me that the implant procedure is irreversible.

It won’t be the first time I haven’t taken a doctor’s advice. I’m going to blink again someday, I can feel it. In the meantime, I’m starting to like my goggle glasses.

I don’t have a network, I have friends.

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There are many fans of networking in my professional association, some more rabid than others. What I’ve noticed lately is that the most rabid fans of all tend to be the ones who you have to introduce yourself to year after year at conference because they can’t remember all the people they’ve met. I’m terrible with names, but usually when I see a person for the second time I have some inkling that we’ve met before. There’s some people I have to introduce myself to over and over and over, and I’m thinking their network isn’t very useful if they can’t remember the people in it at best, and if they actively insult people at worst.

I like to network, but mostly I approach the whole business with an eye towards making new friends. They don’t have to be the know-all-your-secrets type of friends, and I don’t need 500 BFFs, but I’d like a connection that goes slightly deeper than a handshake and a Linkedin request, and then a repeat of the same next year. I’d rather do that with fewer people, and build a high-quality network of friends, than try to amass contacts who I know nothing about. It seems to me that when you focus on the quality of your relationships, you’ll be able to leverage them better than when you focus on quantity. Sure, you might have 700 Linkedin connections, or 2,000 Twitter followers, but if you put out a call for help will any of them respond? Will you get a quality response from people you’ve learned enough about to trust? If you have a smaller network of friends, they’ll work a little bit harder for you when you need them to, and vice versa. If they’re the type of people who also make networks of friends, they’ll introduce you to those people more readily, and you’ll know you can count on those people too.

Some people in my professional association also have this little love affair going with Twitter. Many espouse it as a way to build your network, and I know it can be, but without actually meeting and speaking to each other in-person and forging some kind of deeper connection it’s all very superficial and shaky. I think Twitter has its uses and I also think it’s ridiculous, but even if I didn’t have that personal conflict I would know that it doesn’t come close to a chat over drinks. What I do like about Twitter is being able to get a small glimpse into the life of a person I have met or might meet at conference, and that can prompt a conversation leading to a deeper connection. But I’m not sold on Twitter as the best medium for this as people tend to keep things impersonal over there. And let’s not even talk about Linkedin, the most BORING and impersonal unsocial networking site ever. I know a lot of people have various problems with Facebook but I find it to be the ideal tool for building deeper connections. I would so much rather be Facebook friends with someone I just met at conference than have them follow me on Twitter. I always learn something about them on Facebook that makes me like them even more, and makes our connection stronger. The connections become more personal and more real. But then again, I have an exceptional group of quality Facebook friends. I add people who I meet, who I like, and who I remember.

I had no idea that networking is considered by some to be a bad thing, until somebody mentioned that to me at a conference several years ago. I bet its bad reputation comes from those rabid networkers, who abuse the whole idea of making connections. In my world, networking is so much fun that conference time doesn’t even feel like work time. (Don’t tell my boss). It isn’t rabid networking or Twitter that keeps me coming back to conference year after year even though I pay for most of my own travel expenses now. It’s my friends. And there’s always room for more.