Getting my body back

I have a gluten intolerance and a dairy allergy, and last week, I had some beef jerky that had some gluten cross-contamination in it. For about three and a half days, my left leg was weak, my left arm was weak, and I wasn't sleeping well. Now that I have my diet under control, I feel terrific; I go to the gym, play with my kids outside, and work with no weakness nor pain! But those times I accidentally have gluten or dairy, it feels like a tailspin that sends me back to 10 years ago when I was in a wheelchair and in excruciating pain before I ever knew my diet had an effect.

So, that range of emotions seems more of a continuum.

And it ranges from feeling overwhelmed because I know this isn't how my body normally functions, nor how I normally walk, to feeling relieved because walking with the cane is somehow familiar. It almost feels like a relief in knowing that my limp is justified. I can get along well with a cane because I don’t have to use as much mental energy in maintaining myself upright and steady. Did you know that at any given moment, I know where I can steady myself should I start to lose my balance? I take a mental survey of which table, chair, or wall is closest, and I kind of plan my route from one place to the next according to what I might need to steady myself on. The way I stand has changed in order to provide maximum balance should any part of my left leg give out. I know how to monitor my gait so it doesn't look like I’m limping, if indeed, I’m feeling low on energy. What’s unconscious behavior for you is conscious for me. And it’s tiring.

But with my cane, I don’t have to worry so much about that. I have my cane to help me be steady. I have a valid and visible excuse to limp. But, it takes a lot of physical energy to shuffle my leg along and to not simply fall over, even with my cane. I can’t pick up my boys when they ask me because I can’t hold them and keep my balance. I can’t roll around on the floor with them when they ask me. At work, I can’t simply spring up and assist students if they need individual help at their desk; I ask them to come to me. In addition, when my left hand gives out, I have my brace to steady it, but it gets cumbersome, too. And, truthfully, it affects my mood because I'm not really able to roll with the punches.

It’s not that I’m in pain, either. I didn't have dairy, after all. It’s just that my leg is weak, and I can’t really feel it to make sure it’s where it’s supposed to be. I tell ya, it’s a good thing I don’t drive stick shift anymore. Just the older I get, the more I realize I need to drive automatic.

And that’s another point on the continuum—merging reaction with age. Though I’m not super ancient, I’m older than I was 10 years ago when I first got sick, and I’m older than I was when I started working out in 2007 to get healthy after my recovery. Fortunately, I’ve found the two major triggers for my weakness—gluten and dairy. The third—tiredness—is just something I’ll have to work with being a husband, father, and teacher. You know how it goes.

At the start of my reaction, I didn't remember how much longer it would go, but it lasted about three and a half days. With dairy, I know there’s a 2 week recovery period. I wrote to a friend last Thursday, "I don’t remember with gluten, so today may be the last of it, or it may go on for another week. I just don’t remember." By Friday afternoon, I was feeling strong again, like everything came rushing back to the left side of my body. It's always felt like that--like a neurological dam having opened up to my affected limbs. My wife was super supportive because she was getting over a reaction herself, though for her, it could be a wider range of things, as she’s developed a sensitivity to eggs, nuts, and soy in addition to her gluten and dairy reactions. I know, I know, we’re such a pair!

Now you know how to defeat me. Muhahaha.

Papi's sick

Ten years ago I couldn't walk.

Let that sink in for a minute.

I was studying and living in Madrid, Spain, when I got sick with Guillain-Barré syndrome--the best label we could put on it--which meant I had ascending paralysis from my feet, up through my legs, and into my arms and trunk. I would have episodes of paralysis--something highly irregular for Guillain-Barré--which would last from 30 minutes up to 4 or 6 hours. In addition to the paralysis and general weakness, I was having excruciating pain in all of my joints, so walking was extremely difficult even when I was using my forearm crutches. Sometimes I couldn't speak. After about two and a half years of recovering, physical therapy, occupational therapy, an additional Bachelor's and a Master's degree later, I had started teaching and had started my career. I felt like I was on the up and up!

About six months after we got married, my wife was diagnosed with Celiac disease, which meant that not only did she have to be careful about not eating gluten in our home, but I had to be careful also, so as to not get her sick. After we moved to Memphis, we decided to go completely gluten free at home in order to feel safe and healthy in our own home. We agreed that any time we went out to eat, even by ourselves, that I could have all the gluten I could eat, and boy did I splurge in those early months of discovering glorious Memphis eats--fried chicken, catfish po'boys, hamburgers, and RIBS!

But I would feel awful afterwards. I felt sluggish, like my mind was in a fog, like I couldn't concentrate. I would feel weak, and I'd be in pain. My students quickly got used to me using my cane at school, and they would start to ask about my arthritis whenever they saw me with my cane at school. After JJ was born in 2011, we had him genetically tested to see if he would be predisposed to Celiac disease, and it turns out that he has genes for a gluten sensitivity as well as Celiac disease, but get this: he got one of those genes from me. I decided to go gluten free, and in the spring of 2012, I went dairy free, too, and I now have way fewer instances of pain and weakness! Those were the best health decisions I've made!

About three weeks ago, I somehow got some dairy, and I had an awful allergic reaction. Not the "break out in hives" or "just take a Lactaid pill" reaction. The "lie in bed because it hurts too bad to talk or even breathe" reaction. I spent the rest of the day in bed and most of Sunday sitting carefully on the couch. My wife took over with the boys who wanted to play with me. I overheard her say numerous times, "Papi can't play with you today. He's sick." And though it was the absolute truth, it hurt, because I love playing with my boys. I've been dealing with illness for over 10 years now, but they're just barely 2 and 3, and they know that Papi plays with them. When I'm home, I take over a lot of the parenting duties in order to relieve my wife from a long day or in order for her to do some of her own work, as she works from home. Also, it's a way for me to be hands on with my sons and support my wife. Even after a hard day with my students, I love mixing it up with my family!

I love being up and about with my boys, but for the next two weeks, I could barely walk. When I came home, I was so tired, I couldn't do much more than sit on the sofa and watch them play around me. I kept repeating, "I can't play with you today. I'm sick." JJ would grab my hand to get me to chase him, and I couldn't. AJ wanted me to hold him up so he could "fly," and I couldn't. My wife was amazing at helping me and being generally encouraging. She put her needs aside in order to keep caring for the boys and for me. We knew that my dairy reaction would take about two weeks, and she kept reassuring me that this was temporary. I told her that I didn't want my sons to think that I wouldn't take the time to play with them, all the while hoping they would understand it was because I was sick. That's been something I've been musing over the last 10 years--long before I even got married and had kinds. Of course, she said that they would understand when I got sick that I couldn't be active with them, but they'd remember all the fun times when I did.

My parenting with allergic reactions, weakness, and pain may change from week to week, and I don't like that inconsistency, despite all the factors I try to control for. It messes with my mind. But I'm glad I have more good days than bad and a wife to partner and parent with who also understands that. I know what triggers my pain and weakness now, and I'm stronger and in better shape now than even 5 years ago. Through all of these reactions and episodes, what I want my sons to learn most of all is something I really learned only when I first got sick: their worth as a man does not lie in what they do; it lies in who they are.