Gloria Steinem once said that if you are going to be angry, let it be constructive.I have never repeated these words SO MUCH to myself as I have in the last decade, since I was diagnosed with multiple sclerosis, hence I am a proud ms advocate and honored that Patients Rising University, Spotlight on MS asked me for my help.
I was never "why me" about my multiple sclerosis diagnosis in my early 30's, but I also didn't know what I was in for. Honestly, my first thought was "Why not me and thank God it isn't ALS." ALS was what I truly believed I had.
MS has so many different shapes and forms and mine looked so different from my sister's - mine permeated my spine. The doctor didn't want me to go visit my husband at the US Open in 3 months because he was afraid he'd get a call from a hospital 3,000 miles away where I couldn't move. How would he help me? How was I walking still? Sure I held on to things as I walked to scoot around, but I was still trudging along. It was a miracle to many.
I was so tired. I felt so broken. But I worked two jobs and had a 4 year-old and a 6 month-old. I just wanted a break, with my husband. I didn't care what happened in California, I was going. I needed rest. And you know what, people will always want you to work. People will always bank on you and need your money. NO ONE will ever give you permission to stop. That is something my friend Rainy taught me. You have tell everyone else what you are going to do for your health. If they love you, they'll jump off that cliff into the unknown with you. If they are disability or an insurance company, you're probably on your own. But that's okay. You do what you need for your health and you will always find a way.
My principal, I was a special educator with a Master's in urban environments, suggested I throw in the towel. Go on disability. As did my doctor. I looked at my principal who was truly speaking as a friend and asked, "What would that tell my daughter? AJ can't comprehend now, but she's starting to be aware of what is happening - do I model quitting at the first sight of adversity?"
He hugged me and called me a good woman and said if he could do anything to help me to let him know. I miss that man. I miss those days.
But there are things he couldn't know, like shiny floors make me feel like I am suddenly falling backwards. The floors he made me walk to visit other rooms so someone could have a meeting about having a meeting in my classroom. If I could leave every classroom a few minutes early, falling could be avoided. Unchaining the door closest to my classroom, where I could park my car, so I didn't have to walk about two miles too my car would have been great. Look up the Spoon Theory to better understand these. Letting me sit while proctoring tests would have also gone a long way. It would mean the difference between walking through my home door, and crawling through it, at the end of the night.
I lasted two years longer and then had to leave because it was just so physical and it took a dramatic toll on my body, and that's before you get to the part about what I did. I worked with students who had serious emotional disorders in one of the poorest, gang-riddled towns in NJ. It was TOUGH. Did I file for disability? Nope. Instead of filing for disability, we decided to be tough in another way. We could change our entire lifestyle, even leaving our home, to make it work. I would write full time and live a more stress-free life. Any stress inflames my spine. Horribly embarrassing things happen. It's terrifying. We weren't sure if we could make it, but we had to try. My partner, my husband, didn't even question all the hits and financial burdens that would now fall on him. He took my hand and never looked back. Only to the side, to make sure I was okay.
The government, disability, most healthcare professionals and insurance companies, didn't. I knew how blessed I was to have him. His name is Tony. If you know a Tony, hug him. Just because there's a man named Tony in NJ, who has been through hell and back for me, and smiled and laughed and danced the whole way. He didn't let this take him down. It was his spirit that kept me UP. Still does. I pray you have your own Tony.
And then life took another not-so-cool turn. The day I would've started teaching, my boss who I wrote for told me he basically lost the accounts, he didn't need me anymore. The "very small" amount, according to us at the time (we were so naive), was now reduced to NOTHING. So I got tough again and I started my own social media company writing anything and everything from insurance blogs to painting clients. I only had three clients steady clients for a few years that paid, while writing a book and publishing and writing for all different publications pro bono. It was hard, but we made do.
When that ended, I even tried to go back to teaching, just as an aide to reduce the stress and in a private setting that was much slower paced, but within seven months my body began to shut down. I was hooked up to pumps in my home, with a nurse and bedridden for months. In the year of going back to school, a huge lesion (lesions you can't see with the naked eye on your spine can render a quadrant of your body paralyzed) - this was a new, big-arse, mass, on my brain stem, at the tip of my spinal cord. Wonderful!
My doctor said this means "Quadriplegia. It will happen just like that." and snapped his fingers. You absolutely cannot go back to work. But how will we feed our kids? How will I pay for meds? I was so tired of people helping me. I wanted to help people. I was supposed to be the savior in this story of my life. I felt pathetic. Wet your pants in a classroom full of kids and walk out with your head up! See how well you do with that? There are things that are taken that have nothing to do with money and dag I want them back. Disability, do you think they considered that?
I finally said okay, for my husband who kills himself taking care of the three of us. He never worries about money in front of me. He eats it. It makes him sick. He's started to have seizures and is losing his eye sight. He gets injections IN HIS EYEBALLS. This is what stress does, what the unseen rips apart, and what disability and healthcare companies do not consider. It is TOO HUGE not to consider. That is basically why I am an advocate with Patients Rising. It kind of starts here. In the middle.
So, he took me to disability which was a shit show from the get go! I am grateful for what I have learned being ill. The humility it has taught me. But it's a shit show, and it is cruel and inhumane from THE MOMENT you walk into a building. I have never heard a story that wasn't dissimilar to mine.
There's nowhere sit at the NJ Disability place!? Are you kidding me? You have hundreds of ill people, waiting for hours with NOWHERE to sit and one security guard playing on his phone with a desk in front of him because he files? Let someone sit on the freaking thing, it would at least have some use! He gets up every now and then to tell people they can't stand "there". When there's no place left to stand - should they stand outside in the January cold? So most of us couldn't stand, and were told to stand in the doorway. Isn't that a fire hazard, aside from being inhumane?
We all know the DMV sucks, but disability doesn't have a heart from the get go. DMV never promised us empathetic driving and registration, but for cheese sake you'd think disability would have a morning yoga session, get scntered and really think about the demographic they will be working FOR, BESIDE, to HELP.
We gave every paper etc. I had a note from my doctor that said, "My patient ABSOLUTELY can never work again or her disease will progress to quadriplegia." You know what they told me? "Good for you for fighting and for trying all those years! Most people don't. BUT, because you made significantly less money in the last seven years, we base it off the last two years. Soo, you are going to make about $900, if that."
I made $300 a month and barely held on financially with my husband's income. So basically, you are punished for trying to find another way to live, for trying to build a bridge. That is what disability is about. Don't try?
What is wrong with this picture?
And we waited forever, despite the nice man expediting it because it was so serious, and I was denied. Denied!
Quadriplegia isn't enough. I can move my fingers. I can walk for a little while, but mostly I need to be flat on my back and stress free or things like tremors, incontinence, loss of site in one eye, peripheral neuropathy and PAIN...so much physical pain will flood my body to be manageable. Someone sneezes and my body falls apart. I can't lift my right leg very high. I lift it with my hands from my thigh. My husband helps me a lot. Oh, and swallowing. I now have serious issues with swallowing.
Thank God someone gave me a job in a factory last month. I can type and they understand my disability, but I come home and I'm done. It's taking a toll and I have worked one week. This morning I woke and fell down the stairs. Then I fell again. When I arrived at work, I got out and my right leg started to tremor and then drag. A man in the parking lot took my arm and helped me to my chair. What a lovely way to meet a new co-worker! Thank you Bob. Not embarrassing at all. I soo can't wait until I wet my pants in front of him. THANK YOU disability!
Seriously, thank God for people like him, for people who employ people like me. But it is my dream, that while I kill myself from trying to help my husband because we were denied what I paid into since I was 14, that he (and the children) gets to sue disability for millions because my life and the quality of it, could've been so much longer if I was given what I was ENTITLED to from the beginning. Over seven years ago. I can't stand entitledness (is that a word?). I think that is evident in the fact that I didn't even feel entitled to good health, but disability is my right, and yours. And yes, I feel really fucking entitled.Especially when it affects my husband and children.
It's the system that is killing me. What they have taken is unfathomable. MS has been more patient! For the anger I feel, I will fight for you. Because Ms. Steinem always reminds me to be constructive with my anger. It's not just me. I am equally as angered, and then constructive when the stories come rolling in my email and inboxes for you and yours.
I get so angry when my friends are put in hospice or convalescence homes. They are displaced. It is not where they belong, BUT social workers will tell you that insurance will NOT pay unless they are separated from their loved ones and placed in old folks home or homes where they make friends that will die shortly. The only thing that is worse than death, and MS taught me this, is lingering in the in between. That is essentially what my MS is. I won't die. I will wait until I am in a head in a bed. Put me in hospice before that happens and that's THE WORST times too. I will be figuratively waiting for it to hit in a literal place where death comes soon. Yeah that's gonna improve the quality of my life and not make me want die with dignity!? What the hell is that? Shame on the system?
Love keeps people going! Empathy leads to understanding and awareness. I have seen very little from disability. What I have seen are many portraits of families where one partner is sick and the other fighting like hell to save them from the system, and from themselves. They just want to live with their loved ones as normally as possible. We have some crazy awesome adaptive technology that is not covered by our insurance plans and it enables patients to be HOME and independent. That pisses me off! Oh but Prof/Dr. Hawkings has it! You can do that! Umm NO. He has it because he is one of the smartest and most renowned scientists EVER!
People like us, that are everyday people, don't get things like that. You must be rich, or famous, or have a serious kick-arse platform.
Well, we have insurance right? Sure, but they won't give you what he gets! They won't give you antibiotics without putting you in audit. If you want this technology, your best bet is to have Go Fund Me page. I have supported and given what little we've had to help people with lifts to get in the shower WITH DIGNITY etc. But my first thought is always, "What is insurance for, if not for this?"
I have a friend who pays for my medication because my insurance covers it but some asshole billionaire bought the rights to it and it's $1200 for a bottle, only $400 with insurance, yay! Wait, but I have like four more medications to fill. My friend heard I skipped it because I could pay and put the money in my PayPal and yelled at me, "Don't you EVER not get your medications because you can't afford it." Now, every month she has just put in the account. I don't know if it makes my heart beat stronger to know that someone loves me that much, or if it breaks it to receive such kindness?
Which leads me to this - what I have also seen? The scope of kindness from friends, family, and STRANGERS is overwhelming. It's been beautiful and probably why I am still living the way I am.
A gentleman realized he was in the building I work in yesterday and asked to see me. He told me I sent two of my children's book for kids who love someone with MS called, Zoe Bowie Sings, Despite All Sad Things, to his two children. He said his daughter, just "this morning" was looking for it. His wife has a bad case of MS and they just put her in a convalescent home. She has an 8 year-old and a 10 year-old.
When you are ill, you need to hear your children's laughter in the hallway. When your are young, you need to FEEL your mother's warmth radiating down the hall. I got weepy and thanked him for his story and told him if he ever needed me to come for author day, I'd make his kids feel like rocks stars and sign free copies for everyone. I don't want money for this. I want kids to feel proud that they learned at a tender age how to deal with adversity.
I am pissed off for them. For her. For him. For the kids who miss their mother and the mother that lays, misplaced, longing for her home. I will get my doctorate and continue fighting.
There's so much we can learn if we tilt our heads a smidge. But there's also a time to get mad and speak up.If we do not speak, no one will hear. The will not understand, MS is not something you can visibly see most of the time. If you need something, you ask. If you have rights and pay into something, demand. I am tired of begging for basic human rights.
This man said his wife fought for years for disability. Denied. This is the same man that asked to thank me. So finally they get a lawyer for $13,000 (normal routine is to deny the first time and then you get and they get to a judge who apologizes for everything they'd been through and she said she wouldn't deny it. I was so happy! He finally got someone with empathy! She put it through, BUT he would have to wait another two months. What is two months when you've been fighting for a decade, right? Don't quote me on it, but it's my guesstimate that's about how long it takes to get approved.
Guess how much she got per week BEFORE taxes (YES, they tax you!). $67! She took home $40 a week! What?
That makes me so angry, and I asked him to join me in #PatientsRising. We need people to speak up and out. We need people to know that sickness doesn't have a certain LOOK. You can't judge a body by its cover. Disability is a farce, almost everyone is denied the first time until they get a lawyer who takes 25% of the NOTHING you get for working, even through college and grad school, your entire life! Where is regulation for drugs, while I'm venting? Why can some people buy the rights to drugs and price them at an ungodly price? Can someone explain why my infusion bag costs $8000 a month here and is about $5 in Canada? Oh, and why is it that my insurance can randomly audit 1in 3 people, just for the heck of it?
They do it because they know we are too sick to fight it - when you are in audit it is close to impossible to get out. They get millions off of sick people who simply don't have the strength to fight their way out of audit. They are pre-authorized, paid into it ... but when you are that ill, you give up. They take advantage of that? That is evil. That is why I advocate.
For almost a year I was transferred to India, who would hang up on me - thanks United Healthcare! We sent them nurse's notes, every paper they ever requested, we sent certified, we faxed and saved confirmations and then sent those certified. If I wasn't a writer and I didn't have the late Senator Lautenberg (God bless you and yours and thank you. I pray for you often.) and Senator Cory Booker (thank you!) calling on my behalf, I'd be owing hundreds of thousands of dollars and not be with the one doctor who "gets" me.
When SENATORS got involved, and you have a platform like writing for different publications, all is paid in A DAY!
I should be happy right? Heck no! Fuck no! What about the people who don't have partners and senators fighting for them? What about the people who don't have the most generous friends in the world who pay for my medications and help feed my family when we can't? My friends without platforms?
"There are mountains beyond mountains." As the Haitian Proverb goes, and I worry about the people in those mountains, the ones with no platform.
Please, SPEAK UP. There is no shame in being ill and speaking sows the seeds that affect change. I am so tired. I am in so much pain. I feel like crying. I feel broken. I feel blessed to be home with my family. Blessed to know I can sleep now. I know it will feel like I blinked and I will have to drive all the way back and repeat my day, but I am so grateful, that just for today, I can move and be near other people. And for that, I SPEAK UP when patients are wronged by the system.
Despite all those things, I am not shutting up. I am rising up. I am more than my body. I am the lessons I have learned. And YOUR victory is my victory. If we will ever rise up, and win, we must start TOGETHER. Rise Up my friends. You are so much more than your body.
I am blessed to be a part of Patients Rising University. I do believe I am here for an important reason, and MS is a part of that. Perhaps it's nothing more than learning, and then showing, my children how to rise up. Below please find the live feed at Spotlight on MS event in San Francisco - it streams live at 6:45 PST.
I pray it helps, and we donated (Johnny J. Keane and I) a case of signed books, Zoe Bowie Sings, Despite All Sad Things, for the participants. We pray they make into much needed hands. I will be in Los Angeles at the end of March if anyone needs me for any MS cause, I come for free, and I am here to serve so please use me. God bless you my friends. Love one another. Forgive everything. We will rise.