2018 MG Conference Keynote Address: Andrew E. Kaufman, Best-selling Author

2018 MG Conference Keynote Address: Andrew E. Kaufman, Best-selling Author

Andrew E. Kaufman, author of the international bestseller “The Lion, the Lamb, the Hunted,” gives his MG Story at the 2018 MG National Conference in Kansas City, Missouri.

I'd like to introduce our keynote speaker Andrew Kaufman after receiving his journalism and political science degrees at San Diego State University and Ruby grant began his writing career as an emmy nominated writer producer working at a ABC affiliate in San Diego and then in Los Angeles for more than ten years he produced special series and covered many nationally known cases including the OJ Simpson trial the lion the lamb the hunted was on Amazon's top 100 for more than 100 days and went on to become a number 1 international bestseller his first novel while the Savage sleeps made the top 100 as well as was number one in the chandra passing up two of Stephen King's current releases at the time his book twisted became the number one psychological thriller and second overall best-selling novel in the u.s. it was also an international bestseller andrew is also a contributor to Chicken Soup for the Soul books where he's written about his battle against cancer and the subsequent struggle to become a recognized author in between all that Andrew developed MJ and that's what's bringing him to be our keynote speaker the struggle to overcome the challenges has helped to make Andrew the compelling author he is he's an amazing story to tell us and he also has a book signing that's going on in the exhibit hall so I encourage you to also meet with Andrew there and without any further ado let me introduce to you Andrew – I was telling several people that I give a lot of speeches throughout the country but for some reason this one means a lot more to me so thank you all for having me here I'm a newcomer to this conference and relatively speaking I'm new to this disease but I can vividly recall the exact moment when myasthenia gravis crash-landed into my life it was on May 29th 2015 my newest novel twisted had just come out and I was on my way to a book signing hundreds of people were waiting there for me but I never made it that's because on my way I got into a nasty car wreck my vehicle was thrown across the freeway bounced off another car then careened back across the freeway or it rolled into a drainage ditch the car was totaled and I wasn't feeling so great either I had no way of knowing it then but that that one strange twist of fate would be the greatest gift of my life I was taken by ambulance to the hospital and diagnosed with a closed head injury but other than being a little bruised up the doctor said I wasn't serious so he sent me home then about a month later when I was out on a run I started to feel funny it was like the ground was tilting to the right knowing I had a head injury previously I got a little nervous and I went to the ER and they admitted me to the hospital for some tests the next morning the doctor came in and gave me the good news everything was normal and my brain was normal well relatively speaking then they gave me some not so good news they noticed a large irregular spot in my chest barely showing at the bottom of the scan large a regular spot in my chest no words nobody wants to hear ever my heart started hammering I was actually sweating further scan realized I had a thymoma I'd never heard of such a thing I didn't even know what a thymus was I do now the DA I asked I asked the doctor if it would kill me and he said it was extremely unlikely but still it needed to come out okay I thought nothing serious I'll just take it out I'm good and when I met with the surgeon I wondered whether this tumor could be cancer so I asked and he told me it was very unlikely so rare that only 1.7 out of a million percent out of a million ever are malignant besides that the edges looked good and he'd be shocked if it wasn't benign so just to be safe he ordered a PET scan and I mean to tell you the thing lit up like a Christmas tree my doctor was shocked all right but I can guarantee what I felt was worse than shock I was one of the 1.7% out of a million now my mother had always told me I was special but this was one qualifier I didn't want by the way a little history when you look up rare in the dictionary not only is my picture right beside it I'm waving my big red flag for most of my life it seemed every time I doctor told me not to worry because a condition was rare you could bet I had it back to the tumor the word malignant echoed through my head and I couldn't make it stop because I was no stranger to cancer several years before that I'd battle renal carcinoma of course an extremely rare form and one this tumor that tumor was also found by accident but hearing the diagnosis for a second time did not make this any easier it brought up a whole slew of emotions some familiar some not so much just as before I asked why me it's an unworkable question because really there's no logical answer then came the part where I wondered if I'd done something wrong to cause this I thought I'd been doing everything right I was in great physical shape I was a vegetarian for years I was a runner my cholesterol level is under 100 now here I was back again with a whole new fight ahead of me and because of the size and location of this tumor I knew this would be an even bigger battle than the last soon after my diagnosis I found myself doing what a lot of us do in the face of serious illness something that down the road I would continue to do I used a good part of my energy hurting everyone around me and ignoring my own needs I didn't want to be a source of worry or sadness for other people especially the ones who meant the most to me I had always been the fixer I was the one who helped everyone else during times of crisis I'd already learned that those of us with chronic illness often represent everyone's worst fears so I did my best to neutralize everyone else's worst fears I'm okay with this I reassured everyone and when I saw a hint of war on their faces or in their voices or no I'll really I'll beat this and worst of all I feel okay because none of us are in a good place when a serious illness comes knocking but it was so much easier to shift the worry away from myself and make it about everyone else in a way it helped distract me for a little while unfortunately you can try to run away from things but things will always find you I still had cancer the good news at least they told me was that I showed no symptoms of myasthenia gravis a disease often associated with thymoma 'he's right Maya what thymoma all these strange words coming at me I never heard and didn't want to I didn't even know what the symptoms of myasthenia gravis were let alone how to pronounce it but it sounded pretty intimidating so I felt relieved I didn't have it until that is about a week before my surgery when my right eye started to droop I wasn't getting off so easily the neurologist confirmed I was in the beginning stages of myasthenia gravis but I still had cancer and right now that was my closest threat I prioritize my immediate dangers then deal with the mg once I got through this hurdle besides it was just in my eyes however the cancer would be an even bigger hurdle than any of us had expected I was a little drugged up in that one that's why I'm looking so happy as pre-famous removal because when the surgeon opened me up things got very messy they're not kidding when they tell you they won't know the extent until they get inside besides being large close to the size of a golf ball and malignant the tumour was moving through my pericardium headed straight from my heart it was stage 3 the surgeon did his best to remove the tumor but the margins were what they called controversial meaning not so great meaning they weren't able to get it all because you can't cut into the heart also not what anyone wants to hear the best chance I had for beating this the oncologist told me was to start radiation treatments immediately to try and get what was left behind however he also let me know the threat of a recurrence would be significant the odds fairly substantial I had about a 50/50 chance of surviving this still I moved on I had to I didn't get a much of a chance to process that cancer risk however because my next challenge quickly slid in right behind the last I wasn't even finished with radiation when the mg started creeping up on me I have vivid memories of trying to finish a publicity shoot for my current novel at the time carrying ice packs and trying to keep my right eye and the right side of my face from drooping it was quite a sight I did manage however to solve was a few good shots out of about a hundred even then I had no idea how much my life was about to change soon the mg began creeping up moving in for the assault and attacking my many muscle groups my arms my legs my face my jaw my mouth my diaphragm my neck you name it it was that fast and it was scary my body was being invaded by a disease I barely understood but there's one thing I was quickly learning myasthenia gravis is a thief it steals so much from us more than just our mobility you can take our confidence our relationships our hopes our joys and so many other things for me it just kept taking before long I landed in a hospital with an acute exacerbation headed for a crisis I spent an entire winter there through Christmas and New Year's while they tried to get this disease under control with little success in fact I taken up residency there for so long I actually thought about changing my voter registration to the hospital the nurses and I were like this of course my biggest fear my scariest was that it might take away the most valuable thing to me the tools I use to make my living my fingers I still had so many more books to write so many stories to tell the world the treatments weren't working because I haven't extremely you guessed it rare form of Mg in fact to my knowledge the first case was just discovered this past May and it may appear on the second I told you I was special for all the wrong reasons malignant thymoma associated Sara negative myasthenia gravis say that ten times this particular form my neurologist told me tends to produce more serious and life-threatening symptoms and it's also quite defiant to treatments Meston on did nothing for me neither did plasmapheresis the supposed Cadillac of all treatments and because of my two cancer diagnosis and the high risk of recurrence many an immunosuppressant drugs were off the table which only limited my further treatment options I did get a benefit from IVIG some so they threw in Rituxan as a companion which worked for a little while until they didn't so we kept raising the IVIG dose and decreasing the intervals between treatments then the same thing would happen all over again my muscles just got weaker I was in trouble and I knew it so I did the one thing that has always saved me in times of distress the one thing I've done since I was a kid when the disease allowed it I wrote there were many times while in the hospital where I could barely lift my fingers to the keyboard let alone keep my head raised but I could not give up writing is my lifeblood my oxygen my strength this disease could take many things from me but I'd be damned it would take what made me feel most alive I was the one writing this story and it wasn't over yet not even close so I began to journal my battles I wrote about the small victories the downfalls the anguish the dashed hopes the struggles and about the dreams that suddenly seemed to be so far out of reach because of this villain invading my body as I had done during my first bout with cancer I was writing my way to recovery and when my hands didn't work I dictated not only did I write about my struggle I shared them openly chronicling this fight on social media for my thousands of followers to see I put everything out there but sharing the details of this journey wasn't just about me quite frankly I didn't want the attention I didn't want the pity this was about something else it was about stepping forward and putting a face on a rare and misunderstood disease people with mg aren't just numbers we're not percentage points or dots on a graph we're mothers and fathers husbands and wives sisters and brothers sons and daughters we are friends and we are real people with real feelings with real pain both physical and emotional and each of us matters most importantly we are survivors we become survivors the moment we receive that diagnosis and we are survivors every morning when we wake up and open our eyes but no matter how hard we try to educate people we are still so often judged I had a voice I had an audience and I wanted to make use it to make people know or help people know that they are not alone that they don't have to suffer in silence that nobody should ever fail ashamed of having this or any other chronic illness I was putting my story out there and it was uncomfortable because sometimes being open and vulnerable hurts but I also understood that sometimes vulnerability can reach people ways and people I'm sorry can reach people in ways nothing else can this was about chasing off the shadows the kind that haunt us all during my 55 years on this earth I've learned there are only two ways to deal with those shadows you can cut the lights hide beneath the darkness and pretend they don't exist or you can shine a light on lots of shadows and make them disappear so here's me standing before you shining my light and telling my story click water break and this is a hard one for me to tell I remember the defining moment when myasthenia gravis showed me its power the occupational therapist walked into my hope in my hospital room or my hotel room at that point so many of my muscles were non functioning I'd gone from running 5 miles a day to barely being able to take a step my body had betrayed me I felt angry I felt damaged I felt scared and alone so therapists pulled me to the edge of the bed and I mean pulled and sat me up and held me there all I had to do was raise my arm as high as possible hopefully over my head but my hand barely made an inch or two off my lap my muscles were trembling so hard that my entire body shook and I finally realized the power of this disorder and in that moment the rest of the world disappeared it was only me and this disease I held it together long enough for the therapist to lower me back on the bed before leaving the room then I broke down I sobbed not in my wildest dreams could I have ever imagined I would be that guy but there I was I'd gone from this to this and I wondered how on earth did I get here I tried to make sense of it tried to find logic but I didn't get far I had always been the overachiever I was the one who only chased my dreams I burned a path to them I went on top of the book that nobody ever wanted to publish the one that no agent would represent me eventually passed up two of Stephen King's books at the time I went on to topping all bestseller lists in the US and other countries I'd even beaten cancer twice did I mention there was a stroke somewhere in there I thought I was tough but suddenly for the first time in my life there was something stronger than I something they couldn't cut out of me something they couldn't kill with radiation treatments I wanted to blame some thing but the act felt so useless because really there's nothing to blame life this disease then there was my biggest enemy the fear but when I boiled it all down I knew I had only one choice to surrender to this disease and when I say surrender I don't mean giving up I mean the exact moment when I learned to let go of the anger of the fear of the embarrassment of the self-loathing and in that moment I made an agreement with myself to live life on life's terms to find my way through this on that day there was a powerful lesson I discover that sometimes you have to be broken open to see what's inside I would not be paralyzed by my fear I would be motivated mobilized by it now when I was a little Andrew my parents used to call me the why child I am NOT responsible for the outfit my mother chose it I'd ask a question and they'd answer and I'd follow up every question with a but why yep I was that kid I like to call myself a student of the truth my parents just called me super annoying I had this insatiable need for knowledge and it drove everybody crazy my new truth here was that I may not be able to beat it but I would figure out a way to live with this monster called myasthenia gravis so I started formulating my plan this disease could take my physical strength but it could never take the most powerful part of me my mind and my determination and somehow just acknowledging that began to give me strength then I hit on something a decision or a spark of hope or I'm not actually sure what it was that came from someplace deep inside me the realization that my second truth would be to make this disease my teacher instead of my enemy I learned from it and that's just what I did I have to tell you it was an eye-opening experience here's what myasthenia gravis my teacher has shown me it's easy to get caught up in a crisis but if I'm only watching the ball I'm missing the rest of the game think about it shifting my focus beyond the obvious was the real game that is to say how I reacted to my disorder was what would ultimately free me from it not just the physically the physical part but then my mental response to it I realize this isn't about what happens to me but rather how I deal with what happens to me I realized I am what I allow I learned here's an example I learned that life a wheelchair can be an enlightening experience people looked at me differently first of all physically I was on a lower plane than they were so they literally had to look down at me and when I looked up I didn't like what I saw the pity the sad smiles the staring the well-intended and sudden leap Stu open doors or people jumping out of my way like I was some kind of incoming missile I didn't want any of that I didn't want to stand out in a crowd because of my disability so many times I'd wish someone would have just passed me by and said hey dude how's it going but you know what I realized that before I landed in a wheelchair I'd been doing the same exact thing to people in that situation it wasn't until my perception shifted to the other side that I realized it's not people's fault the way they react to us so while those reactions made me sad my own time in a wheelchair help me understand to cope with them to not take people's responses and cues personally another example CTS and MRI scans in search of malignancies have become a way of life for me but I refuse to give them the power to frighten me instead they remind me of time it's not about how much I have it's about what I choose to do with it those scans have taught me that each day is a one-time offer I never waste it I embrace it even the bad days another example I receive IVIG infusions six hours a day five days a week every other week it kind of feels like my second job between the frequent relapses and infusion hangovers if I'm lucky that gives me about three days to receive to have muscle strength back I'm all pumped up for this conference by the way three days to feel normal before the next treatment starts again three days to feel sort of like everybody else three days to meet up with friends maybe even exercise a little if I'm up to it before it all gets taken away from me but you know what those days are golden and I'm so damn thankful for them since I'm making this disease my teacher not only do I appreciate each moment I live in it I make every second count how I look around me I noticed the beauty in life I tell people how much they mean to me and I smile at strangers try it you'd be surprised what happens in other words I stay present which is the next lesson I've learned I know full well the cancer could return and I know the MG could progress am i being negative by always seeing those dark clouds hanging over my head I don't think so on the contrary those clouds remind me to live large facing my own mortality has actually forced me to prioritize to see the world in full color to take the small things in stride to have the ability to laugh at myself and to see each day for the gift that it is in Chicken Soup for the Soul the cancer book I wrote living each day like it's your last is like climbing the tallest mountain in the world it doesn't matter how long you get to look down just taking in the view makes every second priceless and every step well worth the trip everything else is not as is noise because the truth all any of us has is this moment the past is gone the future it hasn't happened yet neither of these things exist in the now the only thing that does exist is right what's right in front of me I'm not a fortune-teller worrying about what will happen tomorrow that is to say escalating things in my head is like writing fiction in my mind yes I do that for a living but with the understanding that none of it is real while writing my novels I step I step into those imaginary worlds but I know when to step out so every time I begin to worry about my illness I sternly tell myself come back to your safe place come back to this moment in other words be here now and I make a promise to myself to make each second my stepping stone moving from one to the next a word about strength I always find it a little funny when people ask me how I can be so strong how I can avoid giving up and I tell them that to give up is to suffer and who wants to do that so how have I learned to stay strong I started out by choosing my tribe your family your friends these are your tribe members and if you can't find those people then find others who can doctors can be part of your tribe so can support groups and other people who are fighting mg look around you this is your tribe I am your tribe once I found my tribe I learned to lean on them at first it was very difficult doing that asking for help I'd never done that before I felt like a burden I felt weak then I realized that's not true at all because it actually takes strength to reach out for help otherwise it'd be easier to do right nobody in my tribe wants to see me suffer and they've told me that taking action can actually help them cope something else I've learned there will always be bad experiences in life but there will also be lessons and when you find the lesson you shine light on the darkness you take back your power so I try to find my lessons in life and then be grateful for them as an example I have ADHD rather than in spite of it I became a better writer because of it I had difficult processing information and that figured everyone else had the same problem too so since it was vitally important to me that I'd be understood I made a goal to speak as clearly and articulately as possible then I discovered that writing was an even better way to express myself and communicate my ideas so I kept honing the skill so that everyone could grasp what I was saying a theme here the whole is greater than the sum of its parts do you remember that geometry listen well it works for life too I am the product of all my experiences both good and bad they are the building blocks that have made me it's about moving forward instead of backwards it's about having no regrets another example of the sum of the whole part theory when I was in here we have learning to walk again I never realized how complex the act was I learned to squeeze my hip to lift a leg all while working to maintain balance each of these acts and so many others work to create movement all of these years I'd taken steps for granted never giving it much thought but as I move between those stainless steel bars I realized how precious each step is from that point on I never took a single a single footstep for granted and after being hospitalized for breathing problems I never took any another breath for granted either for me this was a whole new way to look at life and I was living it with my eyes wide open that's what being present is all about the only predictable aspect of this disease is unpredictability most of us know the symptoms can change from day to day hour to hour even minutes a minute I realized that but I've learned that the bad days are my challenges and the good days are my gifts have there been days when I felt defeated oh yes have there been days when I felt so disgusted I wanted to give up you bet I'm human I wouldn't be if I didn't feel those things there have been days when I felt joyful and days when I felt sad but here's what I've discovered I get to do both my downfalls contribute to my victories just as much as my leaps to my failures contribute to my successes my struggles struggles continue contribute to my triumphs they all work together and my biggest lesson of all this disease may defy me but it does not define me I am NOT this disease I'm so much more than that we are all so much more than that [Applause] you

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  1. We love you Drew!! You are an inspiration! Thank you for sharing your story…. I know you have helped many due to your openness, honesty, and vulnerability…. I pray that you continue to make forward progress.

  2. My wife has been diagnosed with M.G. recently. Have any of you heard of CRISPR Cas-9, not as a remedy but as a cure. It involves genetic editing to make the repairs in the DNA; some clinical trials have started with success involving HIV, Duchenne MS, seizures, Lymphoma and others. I believe it ! Don't give up now !! You-tube and Google CRISPR.

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