Coming in the door, I was greeted with a huge sparkly sunshine – the kind I always tried to draw as a kid but never quite pulled off with such pizazz. This one was not only extra large and happy, but was directly adjacent to another painting that reminded me of the waves nearby. The artwork was so adorable that I hardly even realized that the paintings had been made to adorn the new handicap ramps leading up to my front door. Everything was fresh and bright and the kids were acting like their silly selves, but something just felt off – like something had been missing… Then I realized the something had been me.
I recently spent a month in the hospital fighting Acute Inflammatory Demyelinating Polyradiculoneuropathy (AIDP) aka Guillain-Barre Syndrome, or GBS. One month, two hospitals and several hundred miles from my family. When I went in to the ER on a Friday night I never could have imagined all that would transpire. I walked in with my legs weak and my heart racing, but I walked in…
As I lay here sprawled out on the couch it all seems like some sort of crazy dream – surely I’m going to get up and walk to the kitchen and laugh about what a long nap I had. But then I sit up and realize my eyes are wide open… I move to the edge of the couch and have to drag my legs to transfer to my wheelchair and realize that yes, I’m still wide awake and no, this hasn’t been a bad dream.
Ten days ago I was finally discharged from a short-term rehabilitation hospital to recover from home. I’m not cured, but right now I’m waiting for the damaged nerves to start healing, which is pretty much like waiting for paint to dry. Now that I’m back at home, there are two questions that people have – “How are you doing?” and “Can you walk?” My response to both, so far, has been either a sigh or silence. Because, honestly, I’m not sure how to answer. At least, succinctly.
With GBS, there is no cure and the course of the illness varies drastically among patients- some patients are mildly affected and only have some numbness and tingling while others lose control of every part of their body and end up on a ventilator for months. Who is affected, how they’re affected, and how they recover makes absolutely no sense. GBS doesn’t discriminate.
The course of my illness has fallen somewhere in the middle – GBS has affected many different types of nerves in my body and some have been more severely affected than others. I was fortunate enough to receive a disease-modifying therapy (IVIG) that, in some patient populations, has been shown to lessen the severity of the illness and accelerate the recovery, but there is no way to know if and how well it worked. The only way to tell how a GBS patient will fare long-term is with a crystal ball.
As for now, my hands work, but they’re clumsy, weak and a bit numb at times. I can type and am gaining sensation in the one hand that was more severely affected, but if I put them under water they’ll feel two different temperatures. As for sharp knives??? I’m sure I could handle one if I really concentrate but… That’s not something that my husband is comfortable letting me try quite yet. My blood pressure and heart rate are finally under control but are going to have to be closely monitored as I recover and my breath support and swallowing are doing much better. Half of my face is still pretty numb as well, but I’m finally able to smile. I’m tired a lot. Very, very tired. But the level of exhaustion depends on what I’ve been doing and what kind of therapy I’ve had that day/how hard I’ve pushed myself. One moment I can feel peppy and strong (typically in the morning) and then a few hours later I can feel weak and so tired I can hardly hold my head up. Having girls around to remind me to get out of my PJ’s, brush my hair and put on some makeup has gone a long way toward making me feel “normal” again, and one of the few outings I’ve taken in over a month was to get my hair cut. (Then I slept. A lot.)
The answer to the second question – “Can you walk?” is much simpler. “Not yet…” I can finally move my legs some (I couldn’t at all when I went back in the hospital five weeks ago), but I can’t yet bear my own weight or stand on my own, which means I’m in a wheelchair. I’ve tried to stand on my own outside of physical therapy once or twice – I got in big, big trouble. One of the best descriptions I heard of a patient with GBS is that they had “jello legs.” They’re there. They can wiggle a little. But if you try to put weight on them they give out. Just like jello. As a result, I can’t yet be left alone for very long in the event I fall and can’t get up. Yep, just like the old people in the TV ad. I would say that this level of Holly supervision is overkill, but I kinda sorta fell out of my wheelchair in the hospital just before I left and ended up face-down on the floor. I was laughing hysterically, but then realized I couldn’t get back up to the chair or a bed so I laid there for a while until I was able to summon someone to help. There was lots of paperwork that had to be filled out and the incident was chalked up to “user malfunction.” Seriously though, remembering all the tricky parts of wheelchair life like putting on the brakes takes a little getting used to… I promise I’ve learned my lesson though…
All jokes aside, this month has been intense. GBS is one of the strangest and most frustrating illnesses I’ve ever run across. I’ve spent the past month laughing about how ridiculous this illness is (when I’ve been awake and in the mood to laugh), and now that I’m home the laughter is mixed with increasing frustration because I’m ready for all this to be over. My entire family and support network is exhausted and ready for this to be over as well… Thinking back on how far I’ve come over the past couple weeks though, where I am today really is a miracle. An honest to God miracle…
If I’ve learned anything about GBS it’s that it will do everything it can to beat a person down. It’s a marathon of tears, fear, praying for healing and hoping for miracles. It not only tries to steal the happy away from people, it keeps them from smiling both inside and out. It drains you and frustrates you and literally freezes your facial muscles, taking away your smile.
I may not be walking or have the most amazing handwriting yet, but I’m finally able to smile again. And when I make it outside I have a huge, sparkly sunshine and some ocean waves painted on my doorstep to remind me that I have a long way to go but I’ve made it home. And that’s something we are all giving thanks for.
p.s. – We are still continuing to raise money for GBS research and advocacy efforts through the sale of cute t-shirts. If you haven’t bought yours yet, head on over and check it out! (Click here.)
“We’re praying for you. Please let us know how you’re doing and what we can do.”
I’ve said it a million times and have been on the receiving end of the phrase even more. I’ve always meant it – I want to know what’s going on so that I can support my friend, but I don’t want to be nosy. I want to help, but I don’t know how.
Over the past couple months, I’ve had people step up in the most incredible ways. We’ve been loved and supported not only by family but neighbors and friends. I recently made a post on my personal Facebook page about a dear friend that went out of her way to make a special allergy-safe meal for my family. Their family has similar food allergies, so she was one of the only people I would feel comfortable making a meal for us. But I was still uncomfortable… Not with the safety of the food, but the fact that she took so much time to help us out. With the fact that I had to say “Yes, actually, things aren’t totally sunshine and rainbows – we could use a helping hand.” What I realized then was that was my own issue with self-reliance- I don’t want people to help me out or know the messy nitty-gritty of how things really are. I want to be able to do it all myself and I don’t want to have to let others in. I don’t want them to see the messy. Accepting that you need help and then receiving it truly harder than giving.
Lately, I’ve been forced to change my attitude because I clearly can’t do it all myself.
“Can someone please get the door? Can someone grab my stuff? Can someone please help me shower?” In a short time, I’ve gone from being an independent, strong woman to someone that, at moments, literally hasn’t been able to do anything for myself. Someone who has had to be physically turned in bed to prevent bed sores, assisted in the bathroom and, unable to bathe myself, allowed a stranger to give me a sponge bath and wash my feet.
A stranger… Washing my feet…
Guillain-Barre Syndrome (GBS) takes away a person’s pride in a hurry. There’s no other choice. Just like any other crisis, it affects not only the person fighting the illness but their entire inner circle. Everyone is in it together. Everyone is affected, but in different ways.
Before I ended up back in the hospital, I’d started reading a book called “Just Show Up” by Kara Tippets and Jill Lynn Buteyn. At first, I thought it might give me a few pointers on how to be a better friend to those going through hard things. And it has. But it has taught me far more about opening up about the truth and learning to accept help. Learning to accept help requires true humility, which is not in our nature. At least not in mine… It’s something I’ve been working on though.
One of the sections of “Just Show Up” talks about how one of the authors, Kara, dealt with cancer and how she was forced to humble herself and allow herself and her family to be loved as she dealt with chemotherapy. Her struggle went on a while and she ended up writing and sharing her experiences so that others may learn from them. I’m so glad she did.
Her friend, Jill, writes “One big way Kara has given back to us is by keeping us informed of what’s going on. She’s blogged and been very open during her whole journey…. While I completely understand the need to keep certain things private in suffering, figure out what you’re willing to share and then finding an avenue to do that is a big blessing to those around you. It helps them know how to pray and how to help, in addition to giving them a way to know how you are and what’s going on without having to ask.”
I was reflecting on that passage the other day when I received a phone call from someone I’d befriended last fall – a priest with a heart of gold, love for God and a way with words. He had no idea what had transpired over the past couple weeks and was simply calling to check in. As I told him where I was and what had come about, he shared with me some thoughts on humility, pride and humiliation. I tried to take notes, but my hand was fatigued and my writing nearly legible… Our conversation centered around people sharing their stories to glorify God and how He doesn’t always mean for us to be comfortable. After I’d shared a little bit about what was going on in my life (and my family’s) I told him how recently I had been sharing part of my story and encouraging others to write their own, but I was uncomfortable sharing the truly hard parts of my own. I was in a wheelchair, bloated beyond recognition, and I didn’t want anyone to see me. The visual aspect of it – the sudden weight gain and loss of mobility was oddly one of the hardest parts for me. It’s much easier to share the pretty and the easy – the things that make people smile. Who wants to see some puffy, middle-aged woman complain about how hard things are when things could always be so much worse? I told him that I was torn because I’d received so much encouragement over the years, particularly lately, to share my story but I wasn’t sure whether I should continue to write about my recent “journey” anymore.
He asked me point blank – “What’s the worst that could come of it?” I fumbled for a minute and said “Well…I guess… People would look at me like a complainer. Or someone that wants attention. Plus, they’d see the really ugly parts…”
He said something along the lines of “There’s a difference between people who are simply sharing things for self-promotion or to get likes… They don’t feel the level of discomfort that you feel. There’s something to that… God doesn’t always mean for us to be comfortable. I’m not saying that you should or shouldn’t do something, but pay attention to the discomfort. Let me ask you this… What would you do if nobody cared? If there was no fear?”
I responded, “I would share the parts of my story that are unique to me (not belonging to my children) in hopes that others would feel like it’s okay to not have all the answers. We all have our own hard things – each of us does. Feeling like you have to be perfect all the time can be incredibly isolating. NOT talking about these things (in an appropriate way, with the right people) can really mess you up. I have absolutely no issue admitting upfront that I’m a hot, hot mess and have more baggage than a 747, but I still believe there is a purpose to all this. There has to be.
But… I’m still not sure why I should bother. Isn’t it incredibly narcissistic to think that anyone would care? What difference can I make?”
He shared about what a difference an individual person’s testimony can make and encouraged me to read the book “He Leadeth Me” by Walter Ciszek.
“Yeah…” I responded. “But that guy went through some serious stuff. He should have written about it. Me…”
He explained “We’re only supposed to do our part.”
A little uncertain about what that meant, I went about my weekend and focused on recovering from the busy week. I decided that maybe part of what he meant was that my ramblings would serve to inform those that want to pray for us to know exactly how to pray and what we need.
Then I made an outing to the gift shop downstairs in the hospital for a change of pace and met a nice lady in a wheelchair. Overly curious, I asked her about how she ended up in a wheelchair and how long it had been. I could tell that she was a little taken back by my boldness and I began to question whether I should have asked. It suddenly occurred to me that my going around and asking other people in wheelchairs how they got there and how long it had been was the equivalent of my four-year-old asking people what their dog’s names are and where they live. Innocent but naïve.
She shifted in her chair for a second and looked a little uncomfortable. Then she began to share a story of incredible bravery and strength – far beyond anything I’ve ever experienced. Her story is for her to share, but I can tell you that it was the kind movies are written about. She shared openly and then took a breath and said “You know… People don’t ask me much anymore… It’s been a few years… But I have learned a lot and don’t mind telling my story. I’ve come through depression and fought for my children. They told me I’d never walk and here I am. I still need my wheelchair and I’m in a lot of pain, but I can take a few steps sometimes. It’s a messy story, but I’m alive. I learned to walk again for my children because I didn’t have any other choice. I’m fought hard and I’m alive.”
We sat a while as others walked past and I soaked up her strength. I realized that sharing our stories is a very personal thing. For me, it’s easiest to sit behind my computer or camera and process and share life that way. I’m doing my part to push through the discomfort to help my family and friends know how to pray for us. I’m uncomfortable sharing the messy and asking for help, but when I do it from the safety of my computer it’s a little less scary. I’m making a difference by being honest with my tribe so that they know how to pray. To pray for humility, freedom from pain, resiliency, and recovery.
For my new friend, she chooses to share her story one-on-one, as a personal testimony of human strength. She is proud of all that she’s overcome and appreciates the opportunity to share her testimony with others. She’s not trying to change the world, she’s just trying to do her part to encourage someone.
Both of us are pushing through the discomfort and doing our parts the best we know how. I can’t promise that I’ll write regularly, but I’ll try to share some photos I’ve taken along the way as well as our prayer needs. It may not be pretty, but it will be real and full of hope that all this will serve a purpose one day.
p.s. – We’ve decided to extend the t-shirt campaign and donate proceeds directly to GBS research and advocacy efforts. Order your shirt here today and help fund the efforts of The GBS/CIDP Foundation International.
It wasn’t the meatball’s fault. All the round, brown pieces of meat had done was lay there and allowed themselves to be smothered in a meat sauce on some pasta. When I first saw them, I couldn’t help but smile and start humming a familiar children’s song.
“On top of spaghetti all covered with cheese,
I lost my poor meatball when somebody sneezed…”
Sense of humor (or immaturity) still intact, I was ready to dig into my meal. First, I had to read the label to make sure it was gluten-free though, just like I always do. Unfortunately, this time, the accompanying meal label didn’t reassure me to my comfort level. No biggie. I could either ask for something else or dig into the pile of my own food I had stocked in the mini-fridge next to me. Either way, I wasn’t at risk of starving.
The way those meatballs just sat there so relaxed on the pasta though… They not only smelled good, but they looked good. I wanted to dig right in, but instead I found myself staring at them as a wave of emotions rushed over me. Within a minute, those poor meatballs had subconsciously become the metaphorical representation of myself and my struggles with my immune system – and they ended up being what tipped me over the edge.
I felt anger towards those little spheres of meat. Real, visceral anger. Towards meat.
It wasn’t about the fact the meatballs I’d been delivered for lunch may or may not have gluten in them though… Since I’d been diagnosed with celiac disease a few years ago I’d learned that all it takes is the smallest speck of gluten to trigger an auto-immune response, so I take my food choices seriously. Gluten is everywhere, and it’s my own responsibility to stand guard and protect myself from any attacks by avoiding any accidental ingestion of offenders. It’s something I can control and I don’t feel any anger or self-pity about having to do so.
This was something more though… This was about the fact that I’d stood guard and hadn’t left the watch but somehow a sneakier, more insidious terrorist had snuck in to wage war against my neural matrix. The attack was serious and I hadn’t seen it coming. FPCON Bravo to FPCON Delta.
Looking back, I realize it hadn’t happened that quickly – there had been some warning signs of the impending assault. Since becoming suddenly paralyzed a month prior and then walking a week later (after some time in the hospital), I’d been living with an uncertain diagnosis with another potential diagnosis that the physicians in the hospital couldn’t rule out. The one thing that was known is that my illness was caused by my body freaking out after having a spinal procedure – the physicians had decided my body had responded to the benign (and successful!) procedure by mounting an attack, but they weren’t sure exactly what kind. I was being treated with medicines and physical therapy for what the physicians in the hospital thought might be going on, waiting for things to play out over time.
But I didn’t get better. At all. There were some good days, and certainly the medicines they’d given me had pumped me up and made me extra happy. But when they wore off, or if I was out of bed too much, I would crash in a big way. My defenses were weakened and the unwanted antibody invaders were already running around wreaking havoc on my system. And then one day my body couldn’t take it anymore and I crashed in a big BIG way.
After over a month of exhaustion and pain, hearing the words “definitive diagnosis” and “Guillain-Barré Syndrome (GBS)” was a relief. I didn’t understand much at the time, but I knew I felt very bad, the doctors were confident that they knew why, and I thought they were going to fix me. Now that the attacker had a name, we would be able to chase it down and stop him. I didn’t care if it took nuking him with napalm or luring him into some deadly trap of our own involving a hot shower, warm towel and his own miniature pony. We would figure out what GBS was into, track him down, and convince him it was time to stop his assault on my body.
For eight days, I laid in the hospital and believed that. The pain wasn’t unmanageable at first, and I still had some occasional movement in my legs. It seemed like only the lower half of my body was affected, so I considered myself lucky. As the doctors examined me, they quickly drafted their plans to mount a defense. I would take the infusions that were meant to block the offending antibodies and be back to life and work in no time. All I had to do was rest a few days and pray that I didn’t become one of the 30% of GBS patients requiring a ventilator to breathe for them. You know, because stuff like that is under our control…
After a few days, the weakness and pain started to grip me again – only in a whole new way. I tried to avoid narcotics, but then the pain would creep up on me like a nasty little monster and suddenly become unmanageable – particularly at night. The doctors had started me on IV morphine, but my body would metabolize it so quickly that after a few hours I would be curled up in pain and wrapped in ice packs. One night I found myself crying out step-by-step directions through tears:
“No less than five, crushed ice preferred, double sealed to prevent leaks, wrapped in a pillow case so I don’t end up with frost bite. Sorry for the tears and the raised voice – I’m just going through a thing and will be better soon. I promise I’m not angry at you… I’m just experiencing the “hellfire burning pain” but it will be all better soon. Now, seriously, go get more ice ready.”
The infusions were administered slowly, under watchful eyes. After a few treatments, I found myself moving my legs more than I had been able to before and I became hopeful that meant I would be easily cured. I assumed that I would be the outlier and that is where my scary, messed up story with GBS would end.
By the time the meatballs were on a plate in front of me, reality had started to sink in… The infusions had ended and the doctors had transferred me to the spinal cord injury unit of a rehabilitation hospital out of town that was more experienced with treating GBS. Before the transfer occurred there had been much discussion and concern over the state of my heart, but I convinced them it was “totally fine” and that I was safe to move. I laughed and said “I’m going to be fine. As long as this pain is ok, I’ll be fine. I’ll go to this fancy new hospital for a week, start walking right away and be home in no time.” They hesitantly removed the heart monitor, gave me some medicine to help me relax throughout the long ride and then gave me one last shot of morphine before removing the IV. I was so drugged and disoriented from being in the hospital for over a week that it was easy to ignore what the doctors had said when I asked them for a doctor’s note for work that stated my prognosis. “Unknown” seems like such a silly thing. Unknown doesn’t apply to me.
It’s been a week since I was transferred to the rehabilitation hospital and I’ve finally let go of the anger towards those little hunks of meat and all they stood for. I’m still coming to terms with the fact I’m not a special case and that I have little control over what’s happening inside me, but it’s something I’m working on…
Over the past week I’ve worked harder and apparently asked more questions than any patient ever has. My healthcare team is experienced with treating GBS and their insight and confidence in dealing with the marathon battle I’m fighting helps me trust them and accept the words they say when they’re contrary to what I want to hear. Like when I ask if a certain symptom will change or disappear and they say “We just don’t know. This isn’t a sprint, it’s a marathon, and the timeline and pattern are simply unknown. You will get better, but you will get better slowly.”
What I keep trying to explain is that I’m asking a million questions in an attempt to try to understand what’s happening to me so that I’m more comfortable with the unknown… To me, things are black and white. Linear. Methodical. Controllable. The more I know about a problem then the easier it will be for me to come up with a strategy to overcome it. Apparently, the antibody invaders don’t work the same way though. They’re stealthy and unpredictable and work on their own timeline. Unknown.
Unknown is why it’s taken me a week to write this. Not just because it’s taken that long to process emotionally (and spiritually), but because I’ve been running a marathon in what feels like a fight for my life. My body is exhausted beyond belief and my mind has hardly had a chance to rest and reflect.
Yesterday I watched the sun rise outside my window and finally released all the tears I’d been holding in, accepting that much of what’s happening is out of my control. What’s happening right now is between my body, those antibodies, and God. All that I can do is focus on healing, resting, praying and working towards small, attainable goals while the angry invaders finish their reign of terror and the nerves decide it’s time to start re-activating.
I’m unable to walk, but I’m learning to use a wheelchair like a champ… I’m unable to smile normally, but I can still laugh… I struggle with writing and feeling my hands, but I can type most of the time… I have some trouble with swallowing and breath support, but I’m enjoying savoring what I eat… My blood pressure will skyrocket and my heart will race, causing a horribly uncomfortable feeling similar to what I imagine a heart attack is like, but my medical staff responds calmly and precisely, coaxing the rhythm back under control. Every day we discover some new way the attackers have left their mark, and my team ups their game to counter it. One step forward, two steps back.
While the physicians are doing their part to personalize my treatment with an arsenal of medicines to keep my body functioning, a team of therapists are pushing me to keep moving while my nervous system recovers from the assault. Together, they are holding my hands and guiding me through the unknown. Each day they remind me that it may not be predictable or easy to understand, but I will eventually get better.
Today, I’m choosing to let go of anger. Anger towards my body. Anger towards myself for not having been able to stop the offending antibodies from invading in the first place. Instead, I’m choosing to trust the experts as we navigate the unknown and listen to them when they tell me I’m pushing too hard.
This is a part of my story that I never expected to write. I don’t know when I will be better and at this point, I’m not sure how I should define what “better” even is… All I know is that this is going to be a long, arduous journey that will continue to test my faith as well as emotional and physical strength. Certain goals will be met sooner, but others may take months or years to achieve – and I’m going to have to be ok with that. In the meantime, I will bedazzle my wheelchair with an airbrushed license plate and stop apologizing for not having answers… For having to sign out of the world for a little bit as my doctors stabilize me medically…
Each day I see signs of hope and healing. Each day I push harder towards recovery. Each day I give thanks for how far I’ve come and pray for strength, peace and patience as I continue to fight and recover from a syndrome with the appropriate acronym of GBS… I’m getting better, but I’m Getting Better Slowly.
p.s. – You all have had such fun with the t-shirts for medical research and advocacy that we decided to extend the campaign and re-direct it specifically to raise money for GBS research. Same shirts, different non-profit – this time we’ll be directly raising money for Guillain-Barre research by benefitting The GBS/CIDP Foundation International. They earned a perfect 100 score from Charity Navigator and you can read more about their mission here.
To order your t-shirt, click here.
It really has been nice to meet up like this more lately… I have to admit that it can be a bit awkward at times though – more like a first date. I’ll stay up at night and think about how it might go and what I might say… Get cleaned up and put on my cutest dress… And then I’ll walk into a room and give it everything I’ve got – try to impress you while I share stories of times past and mix it up with some photos of my latest food adventures. Because every not-quite-millennial has to admit to taking photos of their food, right?
(Side note: What exactly do we plan on doing with all those food photos on our phone once we post them on Instagram???)
But back to the date analogy… I’m admittedly a bit out of practice, but that’s what it’s felt like as I’ve written here more lately – like I’m dating again after a long hiatus. Only, before, I knew exactly what I was looking for. I had all the criteria for what my “ideal type” was and if they didn’t meet every check box then it would just never work. You know the list we all (not-so-secretly) have had, ladies… Mine was “Six feet tall, dark hair, patient beyond belief, great with kids, superior fish identification skills, must love magnets and be named Chris.” Obviously.
Now, I’m a little bit older and have learned that the best relationships in life are built upon a foundation of honesty and trust. And laughter. Lots of laughter. The characteristics of the perfect friend or mate aren’t going to be bounded by a simple checklist – they’re going to be exposed as you learn to relax, hang on tight to your values, share about what really fires you up and admit that “Hey, I totally don’t have my act together. Not even in the slightest. But life sure is a lot more fun when we put our masks down and open ourselves to new adventures. Let’s adventure together!”
If this were a date, I would go home and tell my girlfriends how incredibly impressed I am by you. By the fact you’ve listened to me ramble on about the things on my heart and decided to join the journey. You decided to step out of the awkward silence and meet me. You pulled me aside as you noticed me from across the parking lot and said “Hey, thank you for sharing your story. I know we’re both in a huge hurry to race off to our next commitment, but let me tell you something that I have on my heart.” And guess what? Your words ended up comforting me in the most unlikely moment. Funny how that works.
We don’t have to decide right now if this is a forever thing… No need to get so serious so fast. But I’d like if we could continue to get to know one another. I’ll allow myself to be vulnerable and make lots of awkward jokes if you can respect me and my heart. And don’t worry, we can also talk about light things too – because we really should work together to figure out what to do with all those food photos.
Dear Mr. Governor,
I do believe I am quite overdue at writing you this thank you note. As it turns out, I’m not the best at remembering such things. I was fairly certain I’d written you one (at least in my head) but it wasn’t until your latest correspondence with the pretty gold seal and finely inked hand-written signature landed on my kitchen counter that I questioned whether the note I’d penned had actually made it your way. If it’s any consolation, a few weeks ago I ran across a beautifully embroidered hooded newborn towel I’d bought for my friend’s baby – that child is now five.
In the event that you are unable to place a face with the name, I was the one that hobbled onto your stage with the cast on my leg. You not only gave me an award, but were classy enough to make a last-minute change and also place one around the neck of the fine young man helping me onto the stage. Apparently, you’ve learned a thing or two about success and marriage… Between the bright lights and massive crowd the details of that initial interaction were a little lost on me, but fortunately there were plenty of people documenting the day and writing articles like this to remind me of the things we both said.
You used words like “innovation” and “entrepreneur” and “young” and then looked me in the eyes and thanked me for what I was doing to advocate on behalf of families living with severe food allergies. I was honored. Still am. But, quite honestly, I was worried I would disappoint you. I was broken (quite literally) and weary and wondered how I could live up to your high expectations if I wasn’t always able to keep my own child safe. How could I represent all those things you called me when my best efforts weren’t always good enough? What did you (and others) expect to see from me in terms of how I would shape my personal and professional goals and serve as a representative of someone “Thinking Big” for our great state?
And so, when all the cameras left I hobbled back to my car and did the only thing I could think to do at the time – I took the shiny medal you gave me and tucked it the center console. For the past year and a half, it’s sat there to see when I open the compartment, like a secret note just from you to me.
That was before I knew though. Before I’d taken the time to read about the ups and downs in your life. How you’d been the skinny, short kid as well, or how you’d served your country and also served a whole lot of donuts. (All things which make me think we would have a lot to talk about.)
I need to tell you what a difference you’ve made by believing in me though. First and foremost, you’ve raised awareness of food allergies through all the press the award received. (Bless you for that.) Secondly, you encouraged me to continue to be an example of someone “Thinking Big” and never back down from looking for ways to improve upon the world instead of simply being okay with how it is. That one took a while to sink in because a) that’s a lot of expectations to have on your shoulders and b) having such a perspective can make one seem a little… different. And, dare I say, very misunderstood at times.
But then you did the unthinkable… You followed up with me. Twice, actually. Despite the fact it took me some time to start working through my own “spiritual awakening,” you didn’t forget me. You made a point to say “Hey you! I care about you and haven’t forgotten you. Keep being different. You’ve got this! Whatever you decide THIS is!” Although perhaps the literal translation varied slightly…
Now, finally, I can look back and be comfortable with what you and others saw in me. My own attempts at having a safe and happy family have shifted from trying to juggle multiple businesses and being quite so focused on food allergies and more about balancing my life in a way so that life as a food allergy mom is just a part of who I am. I’m finding people to help guide me and reign in my need to constantly improve on the world and instead focus on savoring the goodness of the way the world as it is today. People who are bold enough to remind me that solving world hunger isn’t within the scope of something I should tackle quite yet – but if I choose to do so then I need to be better about letting others in on my thought process and, most importantly, to always be kind. Along the way there have been little signs that I’m headed in the right direction. Remember that baby boy of mine we talked about? Yesterday he had an allergic reaction and was able to communicate it in a way that grownups were able to understand. He’s ok. We’re ok. Most importantly, he is growing up learning that that he needs to be his own advocate and that living with severe food allergies is just one part of his sweet little life.
As for your faith in me? Well, I’ve heard you loud and clear. That medal and all your shiny letters have served to encourage me to trust my instincts and never be afraid of thinking big, even if it makes me a little… different. The fractured foot I had when we met has been restored and so has my faith in knowing that God has his own direction for my life. I’ve found ways to dedicate my efforts towards a few of our common interests – our families, our country, healthcare and donuts. (Only I’ll take mine gluten-free, please.) This week marks a month since I ended up temporarily paralyzed from the waist down – don’t worry though, I’m on the mend now. During the time I spent staring at the ceiling I decided I couldn’t just lay there, so I created an online campaign to raise money for researching rare medical genetic disorders by selling cute t-shirts. Can you believe my family and friends managed to raise almost $1000?
What I didn’t tell them is that I had the Governor’s words of encouragement in the back of my head, always reminding me to think big and use my unquenchable desire to make the world a better place. You’ve reminded me that even the tastiest donut once started as a pile of mush and had to be shaped by the loving hands of others that believed it could become something more. For that, I’m grateful.
p.s. – If you know of any newborn babies named William then please let me know. I have a beautifully embroidered hooded newborn towel they are welcome to.
***7/25/17 Addendum: The “Write Your Own Story” campaign has been so successful that after my diagnosis with Guillain-Barrre (GBS) we decided to do a “push goal” of raising money for GBS research and advocacy efforts. Same t-shirts, another great cause! Check it out here.***
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