My name's Matt and I live in Little Rock, Arkansas. I'm married to Mandy, and we've been together for almost twenty years. We originally lived in Nashville, TN, then Portland, Oregon -- where I worked on some movies as an editor, and finally to Little Rock, AR, which is where my wife is from and where all of her extended family live.
My wife, btw, is named Mandy. She's a few years older than me and other than being a cradle-robber, is one of the coolest, smartest, funniest, most caring people I've ever had the pleasure of meeting.
Here's a picture of her with a frog.
Also, she makes really bad life decisions, like dating me (that's the only one that comes to mind, actually), so we've been together now just shy of twenty years! It's mind boggling how much we've been through and for how long.
Mandy wanted to be in a picture when her dad caught some fish, so she brought her shark along.
Mandy is an accomplished and award winning artist, and used to make incredible paintings and drawings. She also is an amazing textile artist, having made hundreds and hundreds of crocheted art that she's freely given to friends and family, just out of the joy of making something nice and putting it out in the world.
An example of the cool and weird crochet stuff Mandy used to make. Did I mention she's effortlessly funny?
Mandy melding her love of crochet and our love of cats into a scarf that only be described as "awesome" or "incredibly extra."
She doesn't do any of that anymore. We'll get to why a little further down this story.
As for her background: she's a native Arkansan, but followed me and my film dreams from my hometown of Nashville, TN to Portland, OR all the way back to her hometown of Little Rock, AR.
Mandy and her seester, Sam.
She's got a sister, Samantha, who is thirteen years her junior and she helped raise her while her mom was busy working night shifts as a cardiac nurse and while her dad was doing construction work. During this time period she had to watch the Little Mermaid no less than 4,000 times. I'm told this is not hyperbole or exaggeration.
I just love this picture of her. She's beautiful.
She went to a really good magnet high school and was accepted there for her talent in art. She won many awards and got a ton of respect for her work. I love her work so much and I wish she could make more.
Again, more on that in a bit.
As a person and as my wife, she's immensely patient, incredibly thoughtful and one of the genuinely nicest people I've ever met. She legitimately cares about others and won't ask for help. Which is why I'm doing it.
I have no shame if it helps her. For her, she gets my all.
Us back in the late 90s/early 2000s. She had so much hair! Me? Not so much.
How she finds any part of me worth sticking around for is consistently mind-blowing, but I appreciate the fact that she does it. I love her more than I can properly explain. She is forgiving beyond measure and I adore her.
Us in our first apartment in Portland back in 2001. A lot of good, rainy times were spent there.
SO: We'd done well for years and made ends meet as I steadily progressed up the chain of entertainment in my first tv job, going from an entry level grunt to coming up with a show that ended up airing on ESPN2 for two seasons! Things were blossoming nicely in my career!
Then, the economic collapse hit after seven plus years at that job, but I was a-ok because I parlayed my marketing skill into a job at a big non-profit helping hungry people in third world countries...and I was successful at it! We raised millions and millions (20, to be exact) in the two years I worked there...and then they, too, had budget cuts, and again, I did a lot of great work and got appreciated for it by not having a job anymore.
So I bounced around in a few other jobs, finally went back into tv, then got woo'ed to another tv station, and now have a good job with the State doing video work and helping the public to understand some of the really cool and good things we're doing to help them.
Put simply, I've done everything the way you're supposed to. I worked hard, I helped the places I worked for to succeed...and we've been good people who care about others and do what we can to make the world a better place...
and then my wife got sick.
There was zero warning that this was about to happen.
She woke up one day with numb hands, feet swollen twice their normal size and a constricting, painful feeling around her ribs. Like someone was tightening a belt to crush her guts out. It was terrifying. Was everything in her body turning against her? Why?!
Over the next year or two, we went to all sorts of doctors and spent all sorts of money on tests, diagnosis, second diagnosis', a lot of shrugs from doctors and tests for everything from Lupus (It's not Lupus, Dr. House!), Rheumatoid Arthritis, you name it. We tested her for it.
Us in yet another Doctor waiting room. Me trying to make her laugh, her trying to reconcile being sick and being married to me.
It wasn't until she had to have surgery on her hand (an unrelated tendon injury from past work, work that, by the way, she could also now no longer do because of the unknown illness) that her orthopedic surgeon, through an MRI, saw something weird on her neck. "Little spots all through here...might want to get that checked out."
Smash cut to a few days later: "That would be sclerosis." said her Doctor, now having more tight shot X-rays on the spots all around her vertebrae and brain.
"...And there are multiples of them, so you have Multiple sclerosis."
So now we had an answer.
We also found out that he thing where she woke up on that first day that felt like she was being squoze to death by a belt is called the "MS Hug."
It seems to be fairly common with people that get MS and others get a variation of it in their hands and feet that feel like they're wearing really small gloves or boots. Luckily, she didn't have either of those. Small blessings, eh?
So -- What is Multiple Sclerosis?
Mandy's brain and white blood cells, the defenders of interloping viruses that make your various bugs, illnesses and cuts go away by attacking them were incorrectly considering the sheaths that protect her nerves, called myelin, as evil invaders and started attacking them to "heal" her body.
Shorter version: Her body sees her nerves as foriegn and attack them, which causes nerve damage.
Whatever her immune system's intentions, it was attacking her nerves and her body was in a full freakout mode. She'd sleep for 17-18 hours a day. She'd have moments where you could see her IQ almost visibly drop answering simple questions, and then she'd turn around and be the same hilarious, brilliant wife I knew and loved. Her eyesight worsened and her attention span wasn't nearly what it used to be. Her hands feel like they're asleep all the time. If she's on her feet for any amount of time her ankles and legs will swell up nearly twice their normal size.
It's changed her life completely, to the point that she now spends a great deal of her time in bed. She's been essentially living out of the bed since June 2017. Exhaustion is a huge factor. Doing complex motor movement like turning and pulling a doorknob at the same time can be hard or sometimes, straight up impossible. As for the staying in bed thing, the only times this really isn't the case is if we're taking her to the doctor or to the psychiatrist to deal with the stress and anxiety that come along with trying to wrap your head around your own internal healing factors kicking your body and brain's ass.
So, these visits to neurologists and radiometry and getting MRI tests and blood drawn and all the fun, extremely expensive medicines to help give you a running shot at MAYBE having the energy to get through the day, not to mention the obscenely expensive shots that your insurance approves, but won't pay for, and haven't, for over a year and a half now...and i have no idea how shots that she would have to take every day can cost FIVE THOUSAND DOLLARS. But that's a whole other issue.
It's a ton of little things, from insurance companies making it difficult to get the assistance you pay them for, to local pharmacies not carrying the things you need, to being harassed and having to line item everything you do to things being so expensive that you literally spend half your yearly FSA allotment in the first month of the year. (This is literally happening to us right now. The gov't allows you to max out pre-tax medical funds to 2600 and we've already spent over 1,000 and it's not even February. Yay!)
Nothing relating to her medical care, her medicine, her insurance, her life...any of it...is easy. We are living our lives 24/7, 365 in a state of being in the middle of a giant pain in the ass.
Needless to say...it's a lot of pressure and stress.
It all adds up and crushes you. Mentally. Physically. Financially, especially.
I seriously get paid on Fridays once every two weeks and typically every penny is completely gone by Saturday. That's one day later for those of you playing along at home. That's 13 days until the next paycheck with zero money. That's 26 days or so a month that you don't know where the next meal is coming from or if you're going to get gas to drive to work to do the job that takes forty hours minimum of your week only for you to turn around and have nothing to show for it.
At the risk of sounding whiny, but actually just stating reality..It really stinks when you've done everything right and now nothing is going how it should.
I know life's not fair, but this is getting to be downright ridiculous.
It is just a nightmare and I've tried and maintained the care for her and us for years, but I'm coming to the realization that I just can't do it all by myself.
Mandy's fatigue and physical limitations make work impossible for her, and I'm stuck in the job market here because of the network of physicians and her family (her actual family) that live here. And once we're out of the hole of medical debt this MS and the awful medical system in the U.S. has thrown us in...we'd like to be in charge of what we can actually do and be able to get on with our lives. We can't plan that while we're so clueless on where anything is going to be coming from in the future.
So, I'm depending on you to find it in your heart to help us. We're good people and we're just trying to get out of the hole that we never asked to be in.
Any bit you can spare would help us begin to get out of the mess our lives have becoming destitute from illness that was no fault of either one of us.
It's both depressing and frustrating beyond any words i have that could accurately describe it.
If you can help, please do. If you know someone who can help financially, please send them our way. We're both good people and we try hard. We just have had a bad run of luck and need a clean slate to start over with.
1. Pay off outstanding medical debt (HAPPENING CURRENTLY)
2. Catch up on things we haven't paid because of medical debt (HAPPENING CURRENTLY)
3. Be able to clear out our house of 17 years to make it more easy for her to be mobile. (HAPPENING CURRENTLY)
4. Replace the HVAC unit that broke last year TWO WEEKS outside of its warranty, since heat can trigger massive MS attacks. We're struggling to do this before Summer 2018.
I wish I were able to have fundraising goals and cool things to give to you for helping but we're really just hoping and praying for the goodness of strangers and friends and hopefully strangers who become new friends and family to help us get out of this hole and stop this cycle of misery.
Finally, we both want to thank you for your time, and I hope you can help us to get into a better place where we can focus on making her as comfortable and free from stress and potential danger as we can and can finally get to a place where we can not be perennially behind the eight ball. We appreciate all the help and donations and good vibes and prayers we've received so far and any help you can give us to keep the ball rolling is incredibly appreciated by the both of us.
ANY BIT HELPS. THANK YOU, AGAIN.
Matt and Mandy Barnette
Little Rock, AR
P.S. - If you're wondering why the color scheme on this page is orange, it's because orange is the official color of Multiple Sclerosis Awareness. Thanks again for reading this far and hopefully for contributing!!!
- David Burnette
- Jeanine Harvey
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