Diagnosis story

Suggested by Mel with special permission to share something particular.  This, is the story of how I died.

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Such an underrated movie! 

Hearken back to the year of Our Lord 2016.  I had begun working with a phenomenal group, and we were building everything from the ground up.  Apparently, I was better at that than following procedure, because I improvised, adapted, and overcame, as Rikki could attest to.  Granted, she was worried I would go all cowboy among some stodgy suits.  And she was right to because that is exactly what I did because otherwise, nothing would have happened.  Sorry, Rikki!

Anyway, there came a point where I was looking at a career change.  I had my hopes set on FBI agent, and I was training like mad for it, recovering from a ruptured Achilles the summer before.  After working out, starting in November or so, I started to get cramps in my left arm while I reached back to flip my collar over my tie. It didn’t happen in the morning, only after working out.  So I chalked it up to a good workout!

This continued, I sprained my left knee and could only do upper body and core.  Then in February I was talking with people at a conference, my closest coworkers from North Carolina who are like sisters, along with Jo Lea, another wonderful colleague, and I couldn’t talk right.  Like I had permanent nasal drainage that was affecting the back of my throat. tumblr_mbc0obVaNW1rpae6q540

Those were my first signs.

At some point, my left arm and hand started twitching, minor at first, but noticeable after a while.  Then at Easter, I’m told, Jessie asked me if I was ok because she was worried I had a stroke.  At this point, and I don’t remember, Mel yelled at me, asking me why I talked like this.  And yelled that she told me to get checked out if I was worried.  I think I had already checked WebMD, and I either had ALS, stage 6 cancer, or I was possessed.  Thanks, WebMD!  This is what made Mel upset because I had mentioned it, while we were just getting Jack’s autism diagnosis, planning on moving, while I was still intensely training for the FBI, and Luke was turning two.  It was a lot going on.

I made the call to a neurologist on the way to my cousin’s funeral.  I was driving out to Front Royal.  The receptionist on the other end was taking my symptoms and telling me it would be a while for an appointment.  Then she called me back and told me with these symptoms I would want to go to an emergency room because it might be a stroke!  I thanked her and went to the funeral because I knew it wasn’t a stroke.

The next Monday I think I went to the ER at Haymarket because they had a shorter wait.  And I was there all day, they had no neurologist on staff and the call-in couldn’t find anything wrong.  Then at like four or so a neurologist came by and seemed concerned, but couldn’t diagnose anything.  We even asked one of the doctors, “is this ALS?”  They were all so positive it wasn’t.  So there I was, about to become Thripshaw’s Disease, and we still didn’t have any idea what it really was.

I finally scheduled an EMG at a neurologist near the hospital, Dr. Hachicho.  She’s from Lebanon, and she was very compassionate and understanding of my dislike of needles.  I was by myself, and I didn’t want to pass out.  An EMG is where they stick a needle that is wired up at the end of your arm or leg, then they shock the top of your arm or leg, and measure how long it takes for the electrical signal to travel between the two.  Needles and shocks.  It’s actually quite funny and I would laugh each time, because it’s basically a localized tazing.  So I’m in there laughing, and the doctor is serious. emg-testing-evaluate-nerve-damage_8daf20d24b34ae13

When she finished, she had me sit up, and praise God she was honest and blunt.  “I think it’s ALS,” she said quietly.  She then gave me a referral to a clinic for treatment, because she knew she couldn’t treat me.  (Ironically, the clinic she referred me to was the before mentioned doctor with the excess decolletage.)

I left the doctor to meet Mel, who was at swimming lessons with my nephew.  I texted her first, but we sat there despondently for a bit.  Then we went home.  I wanted a second opinion, and I got an appointment with the best EMG doctor around, Dr Kurtzke.  We were waiting to get a clinic appointment too, so when we spoke to him and he did the test, he confirmed the suspicion but offered two pieces of hope.  Have faith in God, and the referral to Dr Maragakis at Hopkins.  He’s the best.  We have been going to him ever since.

There are other bits and pieces, like how it might be some other treatable diseases, and how hard it was to test for ALS until it was more advanced.  But I didn’t have false hope, I knew what I had and needed to come to grips with it.

IMG_0752At one point I was lying on the bed, crying uncontrollably, and Mel was with me.  I remember screaming in my head, “Mommy, help me!”, asking Mary for help.  I won’t say I got over it, but I felt in that moment that someone was helping me, easing my worry.  Never underestimate a Mother protecting her children and a Mother asking her Son for help.

This was one Mel suggested.  I welcome comments that add to this account as well as your reactions.  For me, I’m at peace with it.

And they lived happily ever after.

 

19 thoughts on “Diagnosis story”

  1. Thank you, Mel, for encouraging this post. It’s hard to go over that time again and that death sentence.

    I love that you show OLGuadalupe for your Mother to help you. That’s the image I turn to. I hope you know you and your family are wrapped tightly in her mantle. Love you, Joe!

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  2. Joe, your testimony is truly inspiring. You and your family have been a witness to the power of the cross. I have learned a lot from following your blog, and I thank you for sharing these moments with us.

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  3. Joe I’m friends with your sister Jennifer. I read your posts and love that you still do them. I’ve thought of you and your family a lot recently. I caught some bug from hell and knew that if you caught this it would be your end! I breathe fine normally, but this bug, was hard for me. As a result I’ve prayed for you and your family daily in hopes that they do help. It’s been 3 weeks and I have to say, I’ve appreciated you more for your honesty. God Bless you and your family and know that I’m praying fervently . Connie Zapiain

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  4. Joe, Mel Thanks for these posts. When reading them I keep hearing you ring the bell to let everyone know the coffee was ready and of course the jokes. So you wanted to be a G man? Well bet you would have made a good one and with your ties to your old office some great synergy could have happened. OK had to put a buzz word in there Joe. Every briefing needs at least one. Take care and keep laughing.
    Phil

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    1. everyone wants to play cops and robbers! I was swayed by a tattooed, mustachioed agent who thinks like me and carried his SWAT 1911 instead of standard issue Glock. A cowboy, and if he could do it, so could I!

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  5. I love how you call Mary Mom, and that in a deeply sad moment you cry out to her. This story is so frustrating because I want so badly for there to be a cure for you. But this is your cross, your way. We’re all going to die, and some know what they’re going to die of and how (although that can change too). I think fundamentally we all just want to live. Thank you for sharing and letting me walk virtually with you for a bit.

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  6. Mr.G’s brother had ALS.You and your family are in our daily prayers and Rosary.
    Thank you for your candor.You are my hero and we love you more than words can express.
    Our special “Mom” has helped me in many ways and she is always with you.

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  7. Joe,
    I can’t say anything profound like the above comments . I can only say I have benefited from your writings as a Catholic and more so in a personal way.
    I would have done the same ( cried out to the Holy Mother)
    My family prays for you and yours
    Thank you

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  8. I think you knew from the beginning. When I was thinking stroke, you had already looked it up per your other symptoms, and told me, it’s Lou Gehrig’s Disease. I think I did a Seinfeld Elaine–Get Out, not wanting to hear that at all. I didn’t quite realize the extent of the arm troubles you mentioned as I was focused on the speech and possible stroke. The waiting and final diagnosis is traumatic in an of itself. Yeah. ‘Mommy, help’. is right. Every day since. Thanks for the hard post. Love and prayers always.

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  9. Dear Joe, anyone who reads your writings can tell that you are really smart, faith-filled and must be seriously accomplished in some interesting profession. I was shocked at how recently you were diagnosed. It makes your composure, acceptance, good humor and willingness to share all the more touching, inspiring and, yes, heart wrenching. May God continue to shower His strength and blessings upon you, Mel and the children. Believe it or not, you bring light and strength to all of us in Reader-land, and we deeply appreciate that.

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  10. I yelled at you to get checked because I was half annoyed that you were being dramatic and half scared that you would even joke about having ALS. From the time the first doctor said she thought it was a “classic case of ALS” to Maragakis confirming it, I had never felt the weight of the world on my shoulders quite like that. I was begging God to let it be anything else, to please just be treatable!! I remember praying at the St Elizabeth Ann Seton statue at Church (I call it my mom’s statue bc it’s in memory of her). Someone had left a novena to St Rita there, patron saint of impossible causes. I knew my mom had left it for me and I knew prayer was the answer. Daily rosaries became a thing. I wanted to get to Mass or make a visit whenever I could. Looking back it’s funny it took ALS to get me to take my prayer life a bit more seriously. Turns out I was probably the impossible cause, not ALS.

    We were in the process of packing so we could move. I remember crying on the phone to my sisters and saying ALS was such a horrible way to die. I couldn’t eat or think or do anything productive. I cried walking around stores or driving around town. My grandma was also in hospice at the time and I remember you came to visit her after you were diagnosed. She said not to worry, we would all take care of Melanie and the kids. And that’s exactly what people did. Friends and family helped us move. People made us dinners so I didn’t have to think about it. Mass cards flooded in for Joe. A trip to Lourdes was in the works. Slowly I realized that I didn’t have to carry it all by myself. I had so many Simons who were right by side to help me carry the cross. That has been the beautiful part of ALS. The part when people show up to love you and ask for nothing in return. Our family has been so loved by this community and it has been humbling and overwhelming. As ugly and as terrible as ALS has been, there has also been a beautiful side to it that we would have never known without it. I feel like God has taken the absolute worst case scenario for our family and helped to bring so much good from it and that really is miraculous!

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    1. Mel, you are a model for us all. I am so glad to know that Joe is seeing the best doctor and that you’ve been blessed with great and supportive family and friends. Is there an ALS support group to which you turn for caregiving advice, to ask, How do we best deal with neck support issues, mobility issues, congestion and the like? I sincerely hope so. God bless you, Mel. You are in my prayers.

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      1. Hopkins has an ALS clinic we go to every six months that tries to address any issues and concerns. There’s also online ALS websites and forums if we wanted to post on there. Thank you so much for your prayers!!

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    2. What is the hardest part on a daily basis to deal with, and what is the easiest part to deal with on a daily basis? In our thoughts and prayers always.

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      1. Hmm these are tough questions! One of the most difficult things I deal with is probably myself. I have been really into Myers Briggs lately—where’s all my fellow INFJ’s?? Oh, probably at home on the internet like me! Lol. If you’re into that sort of thing it really explains my personality. I am quiet and shy and enjoy my alone time but I also need to connect with friends from time to time. The hardest part for me is dealing with all of the feelings that come along with being me and then throw a little ALS in there to make things extra fun. When I’m tired I get overwhelmed and want to click the “I’m done for the day button.” I constantly battle with myself and worry I’m not doing enough for Joe or the kids. Every time I hear the word “I’m bored” I cringe and think I should be doing more. Friends and family constantly leave things at our door, make us weekly dinners, drive my kids to activities, stop by with a coffee, take my kids out for me and a million other things that I appreciate so much! The guilt of only being able to say “thank you” is hard, especially when I know it’s not nearly enough. I used to be great at writing thank you notes but now a text is my go-to and I’ve had to learn to be ok with that. Growing up everything had to fair. I will never be able to repay everyone in the same way they’ve helped me, and that is humbling. And I realize people are helping me so I can help Joe. That has been the “easiest” thing. People loving me and taking care of me and the kids makes it so much easier to get up in the morning and say “let’s do this!” Sometimes it’s really big stuff, like putting an elevator in our house, and sometimes it’s more subtle, like sending a text to check in and say hey, do you guys need anything today? But it’s all stuff that makes my life easier and makes me feel loved. That is what keeps me going and that has made all the difference.

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      2. Mel’s biggest difficulty is trying to translate what I am saying when I wake her up in the middle of the night by grunting and groaning, because when I am lying down, I can’t talk. Mel is so sweet and helps me, but playing twenty questions in the middle of the night has to be frustrating!!

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  11. Thank you for sharing your story with us, Joe. Truly incredble the faith you and Mel have. There is victory in the cross.

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