Last Thursday I went to four MRI’s on brain and cervical to see if my MS and spinal disease has progressed, and rushed to my monthly infusion. Hooked up, my doctor walked in and summoned me into his office. New lesion at brain stem, top of spinal cord. I knew what it meant; the same possibility seven years ago – quadriplegia.
I said, ”So this is the time I finally give up, and go on disability. This means it’s here. It’s time. Quadriplegia?”
“Yes. Quadriplegia. Disability if the least of your problems Jamie. We will get you that no problem. We have to discuss going forward.”
I gulped, “How much time?”
I have learned in the last seven years with multiple sclerosis that everything is slow going. When you are first diagnosed, you think your world will change overnight. Not true. You lose things, slowly.
So, I wasn’t prepared for his answer, “Instantaneously, no warning. But, you and I keep fighting. It’s what we do. We are a team.” He likes to lay it on me honestly, and then keep it light. That is how Dr. A. works. He will point out what I will lose, but then play up my writing. How much he loves it. How he saw the best play. He can be so casual after something so cold. It's awesome really. It's art.
Dr. A has been my partner in this fight since 2009 and he has been the best choice, next to whom I chose for marriage. The man cares.
I was curious what it means when it just GOES - A friend told me everything starts shaking, followed by the weakest feeling you have ever felt and then gone. Poof.
I thanked her for her honesty.
I called Tony after I got the news, for some reason I was stuck on this - would I need a breathing tube. Can I breathe after the poof? I think I said something like, "If I remember correctly, Christopher Reeves had one Papa? Shit!" Not realizing he was on speaker with the kids.
This conversation led to Zoe asking Tony, very seriously, “Who fell off a horse?”
I shouldn’t laugh, I am sorry. But she pictured me riding my horse in Bayonne while getting an infusion right after a blizzard lolol? She’s so funny. This opened the door to him telling the children what is going to happen to Mama and not to be afraid and that our family will struggle at first, but we will adapt.
I’m so happy she wasn’t like, “Who’s gonna wash Mama’s ho0- hoo from now on??”
That could’ve gotten weird. In case you are wondering. Tony gets the hoo-hoo. It’s only fair. You're welcome Tony ;)
My children know about my faith. I never force it on them. If quadriplegia is where I go, if it is His will, I go.It doesn't mean I don't control what I can. I always eat the right way. Help others with this disease. I try to be a role model, a REAL model, for this disease. My children will know how to handle adversity when it comes, hopefully, from watching T and I fight it.
I have gotten so many letters since I shared the news a few days ago, and I need to point this out - this is rare. My case is RARE. If you get multiple sclerosis, please don’t think this will happen to you. 97% of people with MS have the same life expectancy as people without. Don’t be scared.
Fear is the worst thing for disease and life. If anything will paralyze you, it is fear. If there is a devil – he is fear. You need to be fearless. Love yourself by being fear free. Treat it as a four letter word. Kick it to the curb. Make a list of all that you have and love and hold onto it with all your heart and then go (in your own way) and do what you always dreamed of doing. Fear will send you out to sea with no life raft, GRATITUDE will bring you back.
I wrote a book for children who love people like me, for my children. Lost thousands of dollars. I don’t care. It was for kids and worth every penny lost. My babies have a gift from their mom, a story based on their resilience in the face of adversity – a lesson I pray they know long after I am gone. Mama was watching and grateful for everything they have done for her.
Many things stood in the way of that book, Zoe Bowie Sings, Despite All Sad Things, and I fought like hell to not let anyone take that from them. I am proud of my behavior. It was because of me that it got done, and I will never apologize. They got what they deserved – a proper thank you.
Seven years ago my doctor told me I couldn’t work. I fought like hell to hold on. Whoever made the myth up that we want to be disabled on a couch and collect thousands a month…is a stupid-head. That's right...Stupid..head. I said it.
I am educated. I have a Master’s. I LOVED my job. I was good at it. AND, I made a lot of money. What disability offers me IF they see me as disabled (laughable) – is almost insulting. Okay I am totally insulted, BUT I am grateful and according to my faith, wealth makes it harder to connect to people, to empathize, to cross over. I don’t want loads of money. I want experiences. I want to show Tony France. He’s never been to Europe. I want to show him France and Ireland. I want my kids to see Aunt Jules under Palm Trees in Southern, Cali.
I don’t want stuff or dust, just memories of the people that loved me and treated me like I mattered. Just memories of what firsts that I loved them enough to share with them. Selfishly, I want to be the first to show them all these things.
Before we go, I think we just want to know that we mattered. That someone appreciated us being here and that we mattered to them.
Sometimes I wonder if I mattered to Tony. He has so much burden to carry because of me. He is the most humble, selfless, pure man I have ever met. I pray he misses my laughter and our inside jokes. I pray he misses my heavy questions that I ask at 4 am, before he’s awake, annoying him and the fact that I cry when a soul leaves this world – any soul. I pray my faith rubbed off.
I pray he misses me and that I mattered to him in every way.
My family has endured the loss of thousands of dollars a year since I left and never filed. I am proud, and yet I see how selfish it was now. Tony had to put up with a lot to keep a roof over our heads. I am grateful. So incredibly grateful that he understood it would've stolen my will, and he gracefully took the hit that would have destroyed most marriages.
Before MS, I worked with kids in urban environments. I washed their clothes. I loved them. When I couldn’t, I wrote about MS to reach the people on the fringes who had no one to talk to – and we dealt with monetary losses. Thirteen dollars until Tony gets paid. That is our normal.
But I won’t take it back. MS and spinal disease have meant pain. Losing a house, a career I fought for. Identity. The world was turned upside down, but my faith showed me how life was supposed to be. How we saw our world was so messed up. It’s not about material stuff. It’s about taking the hand of the person you love the most and leaping. He has leapt with me time and time again and never looked back.
We are not measured by what we do. Not even if we devote our lives helping people. Not measured by degrees and money. Not measured. Just loved. If you open your eyes and your heart, the love reveals itself. You are not your body and its limitations, or your money. You’re LOVED. That’s it.
And as I get ready for the chair, I see now how much we fight with others and I assure you – it doesn’t come with us. Only love comes.
So any day now. A weird thing. I wait. Try not to do too much. Breathing is hard lately, maybe it's God's way of ensuring I don't do too much? But - how do I just wait?
I’m walking a line of doing all the things I should do before I’m trapped in my body, not knowing if this could be tomorrow. With MS, too much takes my body away. I have to spend enormous amounts of time being still. So I write. I read. I make every wish for when I cannot move, known.
Seven years ago I started talking to God about the possibility. Talks on how to shed this body, my humanity and prepare. I had to learn to identify myself beyond my body.We are human - it's a weird conversation to begin. Maybe I threw tantrums then. I was not graceful. But I don't feel anger or anything crazy now. I feel good. In love. Grateful. Like I have a lot. Too much really. Why am I not punching things? I must've grown in the last seven years.
Go growth!!
I just want love and I feel grateful for all He has placed in my life. I have led the best life ever.
That doesn’t mean I was perfect – I screwed up, but He taught me. I learned how to be a caring Christian from making my mistakes and I will never point a finger, unless it is at me first. Make sure my children know this. I made mistakes, but I learned from them. I tried to make sense out of every ugly, disgusting muck up there was and I am happy for that. I pray they get that on their own someday. I pray it's neatly tucked into their DNA. All those times I got whacked in the Bronx, made bad choices, felt the despair and shame of them - I pray that made it into them to deter them from doing the same.
But if they do - I pray they remember this proverb - Fall seven times. Stand up eight.
Losing my body has taught me how I don’t need things (Oh except for this one dress on We Style that has the coolest print on it and keeps stalking me on my computer…sigh…), I just want my husband near me, my family. Our laughter never stops. If they have to plunk me on the front lawn in the snow, they do. Same with Tony’s races. I try to BE there in my own way. He’s always grateful and I am always stoked to see him getting so good at cycling and to breathe fresh air. I try to do as much as I can with them, not knowing when I will completely incapacitated.
Mortgages make us slaves, brand new cars that hurt the environment and cost so much money - I see them as traps. I will only buy new clothes if I can commit to wearing them for thirty years. I hate STUFF, It makes us slaves to THEM, when we should be busy loving one another. There's a world of slave labor behind them as well. Not a fan of stuff. Just books. Even those, I send to the person I think will get it the most.
As much as I don't want my life to be about stuff anymore, I have fought to make sure it isn't about lesions either. And now with the new lesion, it is all about that one single lesion on the top of my spine - but it's okay because all I want to do - is love. I can finally let them call me "disabled". I am focused on love. My doctor insisted I cannot work. I am “completely and totally” disabled. I laughed at him when he wrote that. It sounded like something I'd say. His letter seemed like he was yelling at me, knowing me all too well - I can’t stand to face filing. He's written many notes and I have chucked them all. But I can’t anymore.
Today T and I went to social security and met the best guy who handled our case, Eli. He was a blessing. I felt God with me. I did. So did Tony.
Facing disability has been the hardest part of these seven years. I help people. I am trained to help people, to pull them out of deep dark places, to teach them and build bridges that neglect never built, but should have. It is my blessing to help. Work is what I know best, better than mothering. Helping people, especially children. This filing, I can’t lie, felt like a doomsday.
So maybe I am writing this so people understand – people on disability, most, do NOT want to be on it. I made a boatload of money compared to what I’d make on disability. I could never care for two children alone without Tony on what I am fighting to make on disability. It feels like giving up. It feels sad like walking home in the rain after the love of your life tells you he doesn't love you back. Everything feels icky and cold and heavy. The stalls where you get called in (look above) look like a prison. OR, Jacob’s Ladder. The entire thing makes me itchy.
BUT, that is what I am, disabled. Wait, can we call it something else? That IS a possibility. Coin a new term. I am abled at being there for my family. At loving. I can eat a whole bag of circus peanuts in one sitting! It's so impressive. I'm hella funny. I can read like a moe foe. And I write everything. My entire life is this love story I write down. The problem with the last is between carpal tunnel and things going numb, typing is getting harder. Writing, besides my family, is what I do. It keeps me alive. I pray I always have at least one finger to type with. There's voice-activated ways around it. I'd still rather have use of a couple fingers.
Regardless, for God, I will own it and I don’t care if I am in a scary chair with tubes everywhere. There is great value to my life. I am energy, my birth ignited that energy - we all affect each other. All I ever wanted to do was make people understand that it's okay. That they mattered. That their energy is for a purpose. I will never stop trying to make you understand how valuable you are, even with a disability. I swear I didn't REALLY start living until my diagnosis. I'd done a lot - degrees, marathons etc., but something about being diagnosed with MS and an infant in my arm, only stretched out my compassion and empathy. I walked into a world of survivors. I saw people fighting. Indomitable wills. People extending hands and lifting each other up. MS has been a blessing. It taught me to see what mattered.
It also means my children watch me face adversity every day. They watch me face my body. They witness what it does. I share. I always angle it from a fighter’s POV. I refuse to feel ashamed in front of them. I try to own it. If they inherit this, I need them to know what to do. You fight with a positive attitude, with faith (if they find it), and with people who love you – some will be strangers in the flesh that they meet on here, but integral to healing and close friends nonetheless.
I let my kids see my cry. They see me laugh. I typically get a few hours a day where I’m not completely beat and need to lay down, I spend it with them doing homework and making video parodies and lip syncing. Zoe plunks me on a chair and tells me what to lip sync. Not too grueling. You can be FUN and be disabled. What else will they remember you for?
They meet all kinds of people with disabilities, but also know they meet people who are artists and thinkers and talents. Their world is only bigger because of it. My infusion buddies are like their family. I am proud of who I chose to surround them with. Know that if I let you near them, I think the world of you.
So know, Tony and I have this. The kids understand as much as they can. My family is around me and loving us. Same with friends who won't leave our side. I have lived a blessed life. I met my soul mate. How many of us get this during this life? Our house is filled with warmth and laughter. I’ve been educated by the best, taught the best. Written when I could no longer advocate and teach my students. The job was so physical and emotionally heart-breaking, it made my disease progress at a faster rate. So. I wrote and authored a book for my babes so they know I was watching and grateful. And I love God and everything I do is because of and for Him. He loves me back. He has shown me time and time again.
I've been thinking about this lately. I think I am okay because I am okay with the person I have become. I am okay with how I turned out. I've truly tried to help the world in every way I could. I wonder if that has something to do with the peace I feel? I wasn't an asshole.
My greatest fear is my children will be afraid of me if I am quadriplegic. It's a thought I try to let go. No fear. Just, if you ever meet me in quadriplegic form, don’t be afraid. I am a light, not a body. I can still hear you and help you or just listen. I am the same friend as always. I promise. The gear is just a little different.
Don’t let this next chapter scare you from being a part of it. That’s one fear I have. The next is education. God how I pray Zoe gets some financial help so she can be taught by the women who taught me. Bother T if I can’t talk, try to encourage him to find a way to get her to go to Mt. Saint Dominic. My daughter will know me, if she gets to go there. She will understand so many things about me, if I can't communicate them to her, if she experiences what I did at The Mount.
Honestly, If I had one wish, it would be that Mount Saint Dominic allowed Zoe to go there on scholarship, and Seton Hall Prep took AJ.
I am their model for faith. I pray they are watching. I catch Aj reading his devotional I left on his pillow sometimes. I'm always shocked. He is SIX. But I need school to take over in that dept. I want to ensure they know God. Every ounce of faith in me was only cultivated and made BIGGER because of the Dominican sisters whom still hold me up today. When I needed it the most in NYC after graduation, it came back to me and saved me.
Faith is like Kool Aid though. Jim Jones and Kool Aid. They must drink the right faith. There are some crazy Christians and so I am nervous of who teaches them about faith. I don't want them drinking the wrong Kool Aid lol. I trust the Dominican Sisters with all my heart. That's a Kool Aid I need them to drink.
The incredible women I met as children, and grew into adulthood with, who also went there, are awe-inspiring and hold me up as well. They're further proof, that we drank from the correct well. Compassionate women. Some are very accomplished, but we don't compare. We support.
Everything happens for a reason. I have great purpose. You have great purpose. My quadriplegia is no different. I just need to become a little tech-savvy with voice-activated gear and be prepared. We are indeed, preparing.
So please, all the letters, thank you for them but PLEASE don’t HURT for me. If there’s something you can learn from my situation, then go with that. Know that if God loves me, He loves you. Pray for the mother in Haiti who has to watch her kid eat dirt for dinner or the mothers sheltering their children from assault in war-torn countries or refugee camps. THEY hurt and are alone and scared. Please, if you think of me, think of them. Pray for THEM. I sound like I’m trying to be a martyr. It’s almost embarrassing. But I mean it with all my being. Please, pray for THEM.
Disabled people still rock. Trust me. Their jobs (living) are just harder. BUT, we learn to navigate in new ways. Dag, we really need a new word. I struggle so hard with the word DISABLED.
And know, you are our circle. You hold us up. If I feel anything, it is gratitude, not fear. Fear is the opposite of love. The opposite of God. I feel no fear. I feel GOD. I’m soo, so grateful for that.
I think I am done free-thinking this one. Just know I am not afraid and we are happy and life is beautiful. Don't be sad. Eighty-six PM's on FB with people crying and I have over 14,000 emails that I haven't looked at. I'm terrified if I look there will be more people crying. No crying. Please. I am still here. The way in which I am here, may change, but I am okay. We are okay. I don't feel alone. When I was diagnosed with MS, I felt incredibly ALONE. It was awful. Now that we are upping this to quadriplegia, I feel nothing but HELD. My faith carries me; the love God has put in front of me - carries me. And there is no fear. I am one blessed, grateful woman. God bless you always.
PS-Remember, stop fighting. Please. It is so unimportant and irrelevant. If we spent the amount of time we spent on petty fights on living instead – this would be the 60’s all over again. I love you guys. It sounds cliché, many of you I haven't even met in the flesh, but I don’t need to touch you, to love you. I don’t. And I do.
Tips – be grateful, be honest with yourself, don’t fight, love harder, fuck fear, remember - you probably have kids watching who will learn how to face adversity by watching you, just be happy with who you are in the simplest ways (no degrees or fancy cars, just be proud of the good person you have become), do what you love, not what you are told, and the greatest thing of all – everyone is fighting something. NEVER ever say, “Why me?” “Why not you?”
PS - A big shout out to the kind man who helped us at Social Security today, Eli. He was gentle and caring and man that boy could type fast. So fast we call him...Thunder Tips! He has such a hard, grueling job and didn't let it get in the way of his kindness.
