She said, with rubber-band ligaments and expressive aphasia
If you read this blog with any kind of regularity, you know I have been struggling for some months with unexplained chronic pain. You know, too, that I have been to doctors, specialists, emergency rooms, reiki therapists, chiropractors, city gyms, personal trainers, psychics, massage therapists, physical therapists, and talk therapists to try to explain and deal with what is going on with my body. I have been told I have fibromyalgla. I have been told I have poor posture, bursitis, misalignments. There’s probably more in there that has been blocked out, but the bottom line is that none of those things have been accurate, and if they have been, they’ve been incomplete. So for three plus months now I have been in limbo after limbo, sometimes getting a diagnosis only to find it was inaccurate later. I have given myself to treatments only to find them falling apart two weeks in, or sometimes less. I have altered my life to include new habits or excluded old ones. I have added drugs, subtracted drugs, taken vitamins and minerals and flower essences. I’ve done so many things I began to despair because I thought we’d never know what worked, if anything ever did, and then if it ever came back, I’d have to guess again.
Friday I drove two and a half hours to go see a family practice doctor in a very small town in a tiny, fledgling clinic. Today, I have a diagnosis. I have a plan. And I have, at long, long last, understanding. I’m even going to go off one of the drugs. In fact, I’m required to go off it. So, how did this happen? Good question. Better story. But even though you’re reading this blog because you’re hear to hear about me, and even though most of you reading are wanting to know what the hell is wrong with me already, I’m going to ask you to wait so you can hear about Dr. Lynette Iles.
This is her website, where you can see a photo of Lynette. She’s the beautiful smiling woman in the middle. Lynette is a family practice doctor, which means that she does it all, from helping diagnose cancer to delivering your baby. She delivered mine seven years ago, in a forty-six hour procedure which did not, at my request, include cesarean. She did this while eight months pregnant with her second daughter, I might add. And, for full disclosure, Lynette is a friend of the family. My mother was her patient, and through their combined network Dan got his first hospital pharmacy job, and though she was closed to new patients, we got put on the list. She has seen us through all manner of ailments, great and small. She has taken calls on the weekends, late at night, and on holidays. We do get a bit of a red carpet treatment, I admit–the appointment this weekend was made special, at the end of the day on Friday, and afterwards we spent the night at Lynette’s house–but any patient of Lynette’s feels they are treated as if they are special, and that’s because they are, to her.
You will never feel as heard as you do with Lynette Iles as your doctor. Half of it is her body language, and with her own clinic, you don’t just sit with her listening intently, her whole existence fixed on you, you do it now in antique rockers in a room that feels more like a funky living room or college dorm. When Lynette closes the door to your exam room, it’s just she, you, and whatever you have to say. And even if she’s behind, even if she has a migraine or didn’t get lunch, she still gives you whatever time you need to say it. When she speaks, she is calm, and warm, and often funny in her own odd way, which if you know her at all you soon find so endearing that you try to draw it out to hear it again.
This is the scene I came to find on Friday. I had a 4:20 appointment, though when I got there Lynette had left a message with the desk asking me to come back at 5:30, as she had gotten behind, and to please go hang out at her house because it was open. For me this was almost expected, as in the old clinic days I often saw Lynette hours late, but I’ve come to find out that this is actually rare now in her own clinic. It’s only two doctors, to start, herself and her husband, and when they get behind they move people into the open spaces they keep the next day, or they do them after hours. Lynette also does doctor work wherever you need it–at your house, after hours, however it needs to happen. But today I must have brought the old karma back, because she was behind, so I came back at 5:30.
When I did so, I saw Lynette herself behind the front desk, placing last minute phone calls and looking haggard. But she grinned when she saw me, and she soon had me on a tour of her clinic, which they will next month have been in one year. It is not a big place, and as almost everyone I know now goes to a mega clinic (myself included for local care), it was strange and bittersweet, because I wish I were coming here for more than just a special visit. My dentist has a bigger space than Lynette’s clinic. Two exam rooms, an office, an "extra room," a lab, a bathroom, a front desk. (And a "break room," which is a microwave and some books in a narrow closet.) There are five people there: two doctors, two nurses, and a receptionist. They’re more state-of-the-art than most clinics, however, because they run almost entirely on computers, using the latest technology to keep their charts. All billing and peripheral work is sent out to servicers. So this is a quiet, warm, friendly space, full of color and charm and personality. The bathroom even has Paul (Lynette’s husband)’s signature dry humor: a sign over the sink says, "All employees must wash hands before returning to work. It is a good idea for the rest of you also." And over the toilet a sign reads, "Gentlemen, please lower the toilet seat when you are finished. Dr. T gets blamed for enough around here."
The walls throughout the clinic, too, are filled with artwork given to or made for Lynette and Paul by their patients.
Paul’s exam room is beautiful, pristine, rich in purple and gold and filled with artwork about opera, one of Paul’s passions. Lynette’s has a beach scene painted by an artist patient, palm tree and flip flop decor on the walls, rocking chairs and homey chest of drawers for an end table, wicker baskets for supplies, and the most beautiful green retro exam table you will ever see. (No stirrups for a pelvic, ladies. NO STIRRUPS.) And so, after I had the tour and we’d caught up a little, Lynette seated me in the comfiest rocker, eased herself into the other, and before I knew it, I was talking.
I am so used to girding my loins before doctor and therapy sessions, schooling myself to boil my symptoms into a sound byte, to be ready to fight to be heard, to find the way to say the stuff that feels like nonsense so that someone else would listen. I had forgotten, already, how different it is with Lynette. I had forgotten what it was like to be able to just start babbling, to try and make things rational, and then to have her, usually by some strange force and ease, coax you into, essentially breaking down, to telling all of it, every little bit. I tease her that she’s like Greg House except she’s not an ass; she is, but she also doesn’t diagnose by one weird word Wilson says four hours later. She watches you paint a picture, and she lets that mesh against what she knows, and then she also notes what she doesn’t know, and she begins to fill things in. She heard where I had been, what I had done, and what I hadn’t done. She knew every therapist type I’d seen, and how often I’d gone. Lynette is also, again, a family doctor; she has, as I have mentioned, treated my mother, and also my sisters and my brother, and my grandmother. So as she listened to me tell my story, again, she also remembered everything she knew about my genetics, which in my story became the lynchpin.
I wrapped up, and turned to her, not yet ready to cry, but laid bare, all my confusion and frustration and impotent passion for solving this exposed. I wasn’t crying likely because I knew with her I was so safe, sure that at the very least I would get a hit of intelligent analysis of what we had in front of us. What she did instead was lean her head to the side, give me a Lynette sort of smile and said, "You’re too flexible."
I admit my first thought was of what had come up in talk therapy, and I thought, "Maura’s going to love this." But surely my physical issues couldn’t (at least entirely) be based on my tendency to do too much for too many too often, so I asked her what she meant.
And thus came my diagnosis. It was based on how many people I had seen, what kind, and what had happened after each occurrence. Originally (as in, a month ago when I set up this appointment and family visit) she had been gently prepping me for a fibro diagnosis (and as I point of order was the only person who gave me anything practical to do to get through it), but now she said, no, absolutely that is not what you have. She was thinking also of my mother, who has just gone in for her second knee replacement and is now at home recovering. She was thinking of the issues I had during pregnancy with the relaxin hormone, and she was thinking of her own experience with the same, and of her own tendency to be too flexible in the joints. Because that’s what’s wrong with me. My rubber bands are broken.
As best I understand it, my ligaments, which attach my muscles and things at my joints, have borne the stress that my muscles should my entire life, and after thirty-five years, they have said, "Fuck you, we’re done." My muscles, having never borne this kind of stress, don’t know how. So my cycle of pain and regression comes from the struggle to coax muscles to do what they should and the ligaments, once they recover just a bit, sometimes picking up again, and then failing again, and the cycle continues. She spoke extensively about how to exercise, and how important and difficult it will be for me, saying if it did not hurt, I was doing it wrong and would relapse. She explained the chrio is working for now because he keeps putting my bones back where they should be, and therefore the ligaments, but they won’t hold because they’re stretched, and my muscles are not yet strong enough to bear them. Weight and strength training is crucial. Yoga is death (I already stretch way, way too much). I need a new physical therapist, and I need my trainer back, and they need to watch me lift and pull and use muscles, and they need to correct me, ruthlessly, every time I use my ligaments to work what my muscles should be doing. I don’t need neurology, she said. In fact, she told me western medicine wasn’t going to be my friend here. I was also to take no more muscle relaxants–they just made things worse and got the deadbeats off the hook chemically.
I admit for a few minutes I didn’t know what to say. This was it? Just like that? She listened to my story, and that was it? It was that easy? Why the hell hadn’t anyone else been able to see this? When I asked her that, she looked confused, too. "I’ve been wondering that," she said. "I thought this one was going to be tricky, but it’s not. I don’t understand why no one saw it before me. It’s so obvious."
Buoyed (and still in shock) at this sudden help after all this chaos, the rest of my questions, related or not, came pouring out. I asked her why I was dropping nouns. I told her about how I’ll be mid-sentence and I just can’t think of how to find the word, usually nouns, but I can see the thing, describe it, almost taste it. I told her about how my writing has been hard lately, particularly dialog tags. "He said [adverb]" is about all I can do these days. Do I have a brain tumor? Am I going crazy? Will I degenerate into a pile of pudding?
Another smile. "You have expressive aphasia. It’s just there because you’re so stressed about what is wrong with you." I forget the rest of the explanation’s technical points–something about emotions and the right brain and robbing functions–but basically I am so obsessed with this that my brain is robbing from nouns to fuel more emotional fire. So when things begin to straighten out, and now, hopefully, that I have a diagnosis, it should go away. (I already feel a release I didn’t have before–this entry itself was still work, and I have had to reread it very, very carefully, but I couldn’t have written this three days ago. I could only have written emotional dreck.)
And this is how it goes with Lynette–she has so many answers, you begin ransacking your mental rolodex for anything unsovled. In fact, the weeks leading up to our trip south has seen both Dan and I saying, "I’m going to ask Lynette about this" many times over. So I asked her why I was so insane over carbs all of a sudden. Lately it’s cake, cake, cake, and it’s so intense I wonder if I’m pregnant, though to be honest the cravings are stronger even than then. She reminded me this is an important issue because my family has a history of insulin problems and diabetes–I said, "Yes, that’s why I don’t want the cake, but it’s in my mouth before I realize it!" And that’s when she asked me what I eat before my workouts. "A bowl of cereal, maybe," I said. Then added, "Sometimes. Or coffee."
I got The Look. It’s impossible to describe, but when Lynette gives you The Look, you sit straighter, because you’re about to hear what you did that was bad, bad, bad, and you get ready to never to it again and do instead whatever it is she is about to tell you. Actually, what I got was a legal pad sketch of proteins, glucose and ketones, and a lesson in how my cells use them vs. my brain. The bottom line is that I am now to eat a minimum of 700 calories before I go work out, and twenty of those grams are to be protein. And I need more protein in my diet in general. Here is where she explained my muscle pain (some of it), the carb cravings, and the mental deadness I have been feeling (that which wasn’t from stress).
So that’s it. That’s what’s wrong with me. Oh, work is not done–in fact, work is just getting started, and she wasn’t shy about mentioning that this is going to hurt at times. I have to make some calls tomorrow, and as soon as I get done posting this I need to go do some arm work because my shoulders are killing me. But I’m so much calmer, and almost joyful. Because I KNOW. Oh, I suppose this could be wrong, but I have Lynette on the case now. If this doesn’t work, she’ll try another stab. But this makes so much sense. I don’t even understand medicine, but this makes sense. It makes everything fit. Today I am having another relapse, heading, actually, into a baseline that would have had me sobbing before, but I’m not upset at all. I know very likely what I’m fighting, and I know what to do, how to work.
But more than anything, I feel happy because I went to a traditional medical practitioner, and I was heard. I forgot how important that was, how healing that alone is, to sit with a doctor and be heard. I have told Lynette many times that she’s spoiled me for other doctors, because I can’t accept anyone who doesn’t listen, who doesn’t want to know my full map so she can yank out the pertinent bits and wow me with what she sees. I don’t like accepting a world where Lynette is not the norm. I want all doctors to be as brilliant as she is, as caring, as patient, and as inspiring. There’s a reason she has a clinic full of artwork and that a clinic only a few years old (this is their second building) cannot take new patients because they’re that busy. Her patients love her. And those of us who have to move away quickly learn she was even more golden than we previously knew, because there are so few like her.
You likely want to believe that Lynette is a visionary in her field and well-respected, and she is, in places, but there are times when her dedication to her patients and her determination to practice in a way which serves the medicine and the people within it and not a bottom line get her into political hot water. It’s sad, but true, that a doctor practicing outside the box and helping people in ways no one else seems able to is often a threat to those who don’t want to or can’t practice that way. Those of us who have had bad doctor experiences want to believe that a doctor practicing as Lynette does receives the blessings of the universe and that all roads pave themselves before her, but in fact quite the opposite is true. Lately, in fact, she’s had quite a bit of beating up. And when you are her friend as well as her patient, you get to see the inside of her life, which is not our imagined map of wealth and order, but with two doctors in a small practice, means household chaos, and a small practice means cash flow is trickier, so hold those caviar brunches. They are also real people like everyone else, with their own personal struggles, their own frustrations, and their own battles. They even have a few very low blows from the universe: the daughter who was born a month apart from mine is also now in remission from childhood leukemia.
I love Lynette for so many reasons. I love her because she is a living reminder that very often when you follow your heart and do the work you are called to do, the universe doesn’t usually open a red carpet, but just makes the work harder, that pursuing your dreams really is working, and working more, and then, once you achieve a layer, working harder still. She reminds me that living the life you believe in means sacrifice and pain as well as joy and discovery. She reminds me that intelligence and creativity do not, sadly, get the dishes done, and that sometimes your reward for helping others to the point of your own blissful exhaustion is fruit flies swarming the drain. She reminds me that sometimes the consequence for doing and saying what you believe is to be beaten up by those colleagues who should be your allies and defenders.
But she also teaches me that when the world goes darkest, this is when you find your tribe, your true tribe, and there are more of them around than you think. She reminds me that people are important, that listening isn’t just a duty, it’s a skill, that we really, really do want smart doctors in more than specialized clinics at teaching hospitals. She reminds me that love is everywhere, and that life can be oddly rewarding even in the midst of despair. And she reminds me that the decor of the exam room is a lot more important than anyone might think.
It’s hard to thank Lynette. We’re going to pay her bill, but it seems like hardly enough. I made her breakfast on Saturday, and I changed the battery in her smoke alarm that was beeping. If we’d have had more time I’d have started some laundry or cleared off the kitchen table. I intend to get back there this summer, to let our daughters run wild together and put some of her spaces back together for her. But it never seems like enough, because there’s no real way to explain to her that what she does every day, so naturally, is so amazing, such a gift, and so rare that it’s difficult to know how to respond. It isn’t just that she diagnosed what a whole clinic full of doctors and a town full of practitioners could not. It’s the way she did it, and the fact that she does it even with how much life has beaten her up at times, the fact that no matter what the cost, she would not consider practicing any other way.
It’s really hard to say thank you to such a gift like Lynette. But I’m going to keep trying.