From Megan: “I’m dying. I was given a life expectancy of 15 years after 19 surgeries it was chanced to 30. I’m 35 almost 36 and my 12 specialists are still saying 30. It looks like I’m facing surgery #20 asap. All the info is on my page. I’m currently letting a homeless woman I barely know stay with me since she just got out of psych. in patient and we’ve become close and she’s chosen to help me photo-document as my body is failing me. I’m having about 6 seizures a day. I’m having to use the wheelchair almost full time. I don’t know why I’m telling you this. You’re just so smart and always know what to do. I guess will you please get my story out? She wrote a beautiful piece about me lady night right before I seized and hurt my arm in the bathroom. You should read it. It’s amazing how someone you’ve only hung out with once that you come and Tse them for help then let them into your home and give them rides (David does bc I can’t drive) and feed them and do their Landry and give them deodorant and toothpaste etc and want to help them, and they end up helping you. But please read what she wrote and look at some of her photos from our medical trips and think about of you can get my story because my PCP thinks I may not have much time left now. And I don’t want to be forgotten.”
By Cara: “The thing is, her body is failing her. And,I have the audacity to fail my own body. I have witnessed first hand a life, or lack of life, of a chronically ill person. And I have witnessed nothing go right, even when I silently prayed those Hail Mary’s I was taught say in emergencies in Catholic school. I have lied to her. Just so she could sleep peacefully. I have lied to her, just so she wouldn’t have those scary cluster seizures. I know that I am doing her no good, looking into her glazed eyes and assuring her the “the pain meds will kick in soon” “tomorrow will be a better day” “everything will work out as the doctor said”.
She had been doing this for thirty five years. I just came into the scene a week ago. For some odd reason, I am trusted with her spray painted, electric wheelchair to escort her into her doctor’s office. For some odd reason, I am trusted with information like follow up dates, or appointment setting because she is in the office having a panic attack because it’s quite possible she needs another surgery very soon to prepare her for multiple pokes and prods and blood draws and blood tests.
I have seen her pill collection. She could be the Cartel. She could make so a million dollars in an hour if she wanted to, selling her medications. They most definitely have street value. But the thing is, she actually fucking needs to consume it for a chance for another day. Every goddamn day, she needs to take a cocktail thirty medications. Uppers, downers, injected, or popped, she most likely has to take another two medications to up the down or down the up so she can make it to the toilet if necessary. Or something that can make her stomach pain level be 4 instead of a 10. And she pukes violently if that doesn’t work. And she pukes if she happens to be allergic. And she faints. And she falls. And she bruises. And then there is another infection to take care of once this one gets cleared up. yadadadadada
Yeah, so she panics when the remote to the television isn’t functioning. She’ll call four people frantically, gasping for air. They, not knowing how serious such remote thingys are, will tell her to call the 1 800 company number . With the energy she has left, she will write a facebook post about her frustration with Netflix begging for answers, nearly give herself a seizure, She really needs that remote fixed. And she cannot figure it out because she has a traumatic brain injury, When she woke me up at an early hour to fix the damn thing, I knew I had to get it done. She was in tears. She barely could breathe.
I could understand what other people judged so coldly. While her husband is working, and I am asleep in the living room, all she has to distract her from her fatal pain reaching a hospital admittance level, was that fucking Netflix.
What’s heartbreaking is that she dresses her best for the doctor’s office because she has nothing else to feel pretty for. On doctor days, she’ll wake up early, pick a sexy outfit, apply sparkling make up and with the hour we have left before we have to drive an hour to make it to the hospital, her and her selfie stick take model like photos, until she points at me to take some pictures of her posing. I encourage it. “Work it. Oh. My. God. Your ass looks so good in that dress, Yas bitch. Make this your profile pic, bitch!” And we laugh really hard picking out the top ten photos in her phone that are actually post-worthy. And, baby girl, you have no idea how these moments save my life.
What’s heart breaking is that when I cook her a meal, she is so grateful. It’s the best meal she had in weeks, months even. Sure, I can throw things together and it doesn’t taste bad. But I am no gourmet fancy chef who runs some kitchen in Paris. I know what she means. I know what she is comparing my food to. Those hospital t.v. dinners or the jello and hot dogs she’s been living off of on her “good days”. And, baby girl, your compliments make my fucking life worth while.
And what is a good day? A day without pain? That’s not feasible. A day without doctors? No, because she looks forward to seeing different faces. A good day is a tattoo day. She’ll save up for months, selling old clothes and other trinkets on ebay of 75% less than what she paid. She loves tattoo day. We’ll drive an hour to her super talented tattoo artist. As she’s getting tatted, she is getting exhausted. She pops some pills to get through. Dude finally finishes. And she loves her new art, she’s ecstatic. But she just can’t show her gratitude at the moment. She says a quick “thank you” and we rush out. Help her into the car and drive away so fast. We are speeding, like an ambulance. Racing home to beat the seizing and…shit, she is seizing. And for two more days she is seizing. But this isn’t exactly an emergency, no worries guys. Legit, this happens all the time. And this, of all days, are her favorite days because the next coming bed bound weeks, she has new art to stare at when no one is home and she’s bored as shit.
Her body is failing her. And I have the audacity to fail my body.
Her body, no matter what medication, dose of medication, type of crazy treatment or surgery she is ordered to proceed with, she will never get better. She will only deteriorate. Believe me, she has lost friends because her friends have gotten really tired of her not getting well. because her body is like a septic tank. No need for “get well” cards, because there is just no getting well.
She is thirty five years old. She has beat all odds. For God’s sake, her life expectancy was 30. These are one of those stories that never get heard. Pharmacists don’t want to hear her and they are getting paid to listen. They, actually, are the worst. They have this crazy power to throw away her prescriptions when they can’t even name one of her 54 different fatal conditions. They really like assuming they are saving her life by warning her she’s overly medicated and could possibly die. No shit, Sherlock. Just fill her scripts, Jesus Christ.
I want to hear you, sweetheart. It’s okay to scream. It’s okay to be mad at God. It’s okay, i’ll take your picture when you’ve just finished crying, just like you ask me to. I mean, I am honored to be trusted with the camera. This is the most bad ass photo shoot to be apart of. I feel like a journalist and you can just keep doing your thing like Bettie Page did. Gives us both purpose, no?
Thank you Megan Marie….you know why I choose those words.
You are so beautiful. Eloquent, gorgeous pin up doll.
Fears and tears, pounding your fists, cursing Jesus Christ himself for all the unnecessary torture, for feeling too unsafe in your own body to attempt to crawl to the bathroom, you may be hurting, but you, my dear beloved friend, will never in my eyes be mistaken as weak.
It takes strength to surrender. Strength to swallow your pride along with those disabling medications.
A strength that I am not familiar with. A type of strength that beats all odds, like your mother fucking life expectancy!
I love you, sweetheart.
You fucking bad ass!
Keep shining. That moon dust eye shadow is the shit, baby girl!
You are a very near and dear friend to me, and for that, I am forever grateful.
We thank you, we love you, Megan Marie!!!!!!!!!”