Life With A Disability: Sacral Agenesis

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melissa divietri

My Life, as you think you may know it

During high school, I was obsessed with Tupac Shakur -one of the greatest rappers and natural born leaders in my lifetime. I went to a small school in Michigan, so small that we hardly had any students of cultural difference; mostly country folk with a mix of some city. During class, I would escape in Tupac’s poems, stories, videos and natural born leadership. I was interested in the white/black discrimination mostly because Tupac had a way that he could put words on a piece of paper that I felt too. I could relate to the feelings of discrimination because I was treated differently every day with my disease.. My disease is a physically difference where I can’t walk and people are constantly treating me differently; we will get to that soon..

My favorite Tupac poem.. “A Rose That Grew From Concrete
rose that grew from concreteI am that rose metaphorically… I am a self-made professional, who came from a really screwed up background but my motivation and drive.. never died! This determination is how people remember me… I keep going even when I’m hurt, tired or just don’t want to get out of bed – My friends and family know that somethings will never change and I’ll never back down from this happiness; even if life is all crazy!

I am that miracle that came from nothing; I built my destiny. An angel living on earth.

I was a really good artist, and I still am! I would draw black & white, color, paint, crayon pieces of Tupac in class.. I painted a life size image of Tupac in my bedroom.. Ask me how my parents felt about that LOL I kept it a secret for awhile because I would move my headboard on the bed to paint directly behind it on the wall.. Finally, I got caught and had to cover it up.. not because it was Tupac; more because I didn’t ask permission to paint on the walls when I knew I had canvas 😛

I want you to take the time to listen to one of my favorite Tupac & Biggie songs Running
These lyrics.. I feel this passion in my heart and my body.

“Why am I fighting to live, if I’m just living to fight
Why am I trying to see, when there ain’t nothing in sight
Why I am I trying to give, when no one gives me a try
Why am I dying to live, if I’m just living to die”

Am I Blessed?

Taking care of this disease has been physically, emotionally and mentally exhausting. Sometimes, I just want to lay in bed.. let my body win and just die here. The pain is so much, the neck – shoulders – back – head; you would think I would be use to it, but I am not. I just can’t let this mindset win… I am such a motivated person that I can’t let my body tell me otherwise – even if the doctor results say differently. My life is like a ticking time bomb —   My disease is why I am so driven, so successful because  I live every day like it would be my last. I have been there, many times. I’ve felt the last breathe// every time I have a surgery; I never know what to expect when I wake up, if I wake up.

I have sacral agenesis – a spinal disease that wasn’t found before birth – this was a complete surprise. This diagnosis doesn’t have a real determination on how it happens, the spine just stops forming > however, there were personal factors that played a part in why this defect happened to my body. I am not going to sit here to think about all the horrible things that happened to my real mom, my family and myself. My biological mother and I are victims of domestic violence. We are victims of drug abuse.. This is why I have trust issues.. this is why I have an attitude. This is why I just dont give a f*kk about anything. I never know who is going to stick around to get the chance to know them anywhere.

I am very blessed for my family and friends for sticking beside me through all of the bullshit; they let me have my moments.

When I was born in Traverse City, I had to be air shuttled immediately on a helicopter to University of Michigan hospital for intensive care. Because my mother did not know that I had a disease; it was scary for everyone. Can you imagine? I was in the incubator for a very long period of time as breathing tubes helped me get through the day. The doctors didnt think that I was going to make it thru this pain. I put up a strong fight, I really did… I am told every time I visit my specialists that I shouldn’t be alive. My specialists will tell me that “they are my biggest fans” – which breaks me into tears. They love that I am motivated about having so much pain in the past. There is something in me, that just won’t die. And still … I will never give up.

I’ve had 14 surgeries in my lifetime. Don’t you think one or maybe-two would be enough? No, I have so many difficulties from my internal structure and body movement. It is what it is. I have to use medical supplies 4 – 5x per day for the rest of my life. Do you know how often I have to fight with the government for healthcare because the supplies cost $3K per month? I’m constantly battling with my mind, the system and just having peace one day with myself.

Physically

First on this part, I need to fill you in on a bit about my disease. It is again, called sacral agenesis – a rare type of spinal defect…The spine stopped forming during the womb while growing. Some individuals with the same disease do not have a lower body at all – the body stopped forming after the rib cage. I have met others also with this disease who have a normal body but the internal mess going on.

How I Feel? Picture This: Try to imagine the most horrible medical experience in your life, maybe a broken arm or bad car accident (hope not). Now take the experience and add 40,000% more intensity to its extremity. How horrible that accident or broken limb would be if you’re entire body had to be restructured.. basically. I have to wake up every single morning with this… I have to live with all the luggage of my past every time I look in the mirror.

My past experiences…
While I was growing, I was in the hospital around the clock for surgeries on my back, hips to bladder.. awful things that will never leave my mind.  I was almost held back many times because I was so sick. I’m sure the teachers felt bad; but they let me turn in homework late after the recoveries. I am still traumatized from these horrible hospital visits. I am telling you when I say that children should never have to go through what I had too.

I know my situation isn’t the worse, but I could talk for hours about the awful things that I had to witness:

  • hard leg molds made for braces that I had to wear all the time
  • catheters left inside my body to have all day testing
  • X-rays, bladder irrigations.. all of it
  • full body braces when I was in a wheelchair
  • having to do the most uncomfortable physical therapy to get movement going
  • taking medication around the clock

There were times when I did not want to cooperate, I bite a nurse and kicked a doctor. They were both going to fast and I was eventually strapped to the hospital bed for having a meltdown (age 9).

Melissa DiVietriIs this a definition of a champion? I don’t know, that’s up to you. However I think that I a survivor that wants to better myself from living in dependencies.

I have to use medical supplies on a daily basis to empty my bladder and run irrigation fluid to my intestines for bowel movements; my body does not work below the belt.. Yup, you finally know what I’m really doing in the bathroom and why it takes so damn long to get in & out of the restroom. I need to use disinfectant wipes to prep the supplies and lubricating jelly to ease the flow of inserting into my belly button and my small intestine – it is a process! I can’t get the help that I need from the government because too many unworthy individuals use the system.. it makes it hard for people like me to get the treatment that I deserve.

A moment in my life that I will never stop thinking about: There are two surgeries that I will never ever stop thinking about. These are what I call the latest ‘life-changers.’ When I was 19 years old, finishing high school, I had a bladder augmentation (bladder and intestines). The doctors took 1 foot of my small intestine and reconstructed to repair my bladder. My bladder is the worst functioning body part because it would only fill 77CC and I had UTI on a DAILY basis.. ouch! I still have UTI’s – they hurt so bad.. so uncomfortable. I have to pee all the time.  Bactrim, Cipro… all that.. no meds would take this away; I don’t respond to the antibiotics.. After using the small intestine for a new bladder pooch, my appendix was used as a tunnel thru my belly button for irrigation. Yea, its still here but you wouldn’t even notice beside the 1/2 foot scar across my stomach. I get ecoli a lot from food poisoning and just having bad internals.

I have two stoma holes to relieve pressure to my intestines.. One stoma hole had internal bleeding which thru me back in the hospital for another week. I had a home health care nurse for 9 weeks, 9 long weeks to sit on a couch?! If you personally know me, this absolutely killed me.

I attended community college at the time which made it so hard to keep up with school work. I laid on the couch wishing I would just die. I was so depressed.. I went to therapists and home health care. It’s a struggle everyday — I’m crying, dying and wishing I was different. This was the biggest life lesson that I had to endure. I realized that you have to go through the struggles to come out a better person. The therapist helped me reevaluate my life.. motivated me to get out of Jackson and the crowd that I was hanging out with. My home health care nurse taught me how to do everything on my own so I didn’t have to rely on anyone.. I am grateful it happened but I will never forget what I went through to get to where I’m at today.

I needed this surgery, the time was up… My body was dying. Not responding. I had a lot of medical problems as a child but I didn’t want to miss my graduation date. I never loved high school, just liked it.  I was the minority, the only person in the county with a physical disability. My friends act like they know what it’s like to live with something like this?

Please, I take on this disease with SOO much class… its ridiculous.. That’s why I am such a brat and such a boss status. I deserve to be.. I came from nothing. I came from a family who didnt even want me. Parents who left me. Parents who didnt care that I was so sick. I’m not afraid to tell you about the endless court visits trying to get out of the life I was living and into a better place so I can be sane.

I had full body braces to wheelchair to walker and now crutches. I work every single day on walking. I want to walk.. it’s a dream. People take this for granted but I really want to know what it feels like to ice skate or hip hop dance. Oh best believe, I am the last one to leave a techno or house party tho 😛

Emotionally

ESPECIALLY in a close minded communities where you are the only disabled person. I wear my headphones when I grocery shop to pretend I DON’T see the stares. It’s okay when a child does it, but when you are a grown person — I should break it off on you. Sometimes I will fight back.. like a snack biting your neck in a second!

I am still here… I am a person — just like you. I bleed the same blood, I feel the same emotions… I don’t understand what is wrong with people. I don’t even use those dumb amigo scooters to get groceries.. I use an eco friendly bag and carry whatever I can on my back.. yeah, that;s how I get grocery — whatever I am able to carry is what I eat. that;s just sad isnt it?? But I don’t complain, its life and I am thankful I can provide for myself. Unlike some people who use the fuck out of our system, assholes.. you dont deserve any good.

But hey, that’s just the way it is.

When I am walking to class, sometimes I hold my breath.. because I can feel every single pair of eyes on me. I scan the room quickly, and sure enough.. I get it – people are curious.. But 3 sec stare is okay, a full elevator stare.. gtfo. I still hold my breathe. It’s easier when youre in public and no one knows you. That’s when I’m just like – whatever.  I had this one chick take a snapshot selfie of me while I was buying wine at Jonna’s in Farmington Hills. She lifted up her camera to get me in the back of it.. full shot. I slapped the b*ttch – told her to delete the photo before I break her iphone. Shame on her.. and shame on me for letting it bother me.

I’m not an angry person, but ignorance fuels my short temper.

Mentally

I don’t even think there is anything wrong with me. I show signs of improvement every day. I go to the gym and work on my legs — walk with one crutch and lift weights. I take care of myself. I dont have to sit here on a blog for someone to know.. I hold my own. I always have, I came from nothing.. I made this life.. Everything you see, it’s all me. God didnt give this disease to me, if there wasnt  a bigger plan. I inspire other children with diseases or disabilities. I take my therapy pup, CoCo with me to the hospital and brighten the lobby’. I talk to the parents and give them tips on independence and what to do/not to do. They see my confidence shine because I go to my appts by myself. I sit alone at the doctors office, well with CoCo. CoCo is the light in my world, every child who has problems should get a CoCO, lol. She is always happy to see me, licks my face when I’m crying and snuggles on my back when there is pain streaking up & down. I dont know how she knows, but she has some sense where she will lay on my back when its hurting a lot.

I don’t mind if you ask questions. I would rather educate you, than let you assume you know my life.. because you don’t.

I am losing all faith in humanity. I just don’t know how much longer I can deal with this medical crap. The government doesn’t see eye to eye. For crying out loud, I never cry. And today.. was the day to push me over the edge.

I am a happy person, I smile all the time.. but let’s be real.. when you hear that you are going to lose INSURANCE again! It’s such a drain. I can’t afford anything because I am in school trying to make something of my life.

I took the chance to go to college versus working a job I would hate day in and day out.. I’ve met some of the most wonderful people at Ferris State University. My lifelong friends are here and most are graduated but we still talk all the time #CrewLove — you know who you are.

Is there help out there? Being reluctant on the government… its hopeless.. I’ve tried everything. Case worker after case worker.. but you kno a lil secret.. I keep documents of EVERYTHING. Any piece of paper that says denial or new changes in my coverage.. all that is locked in a filing cabinet. Why? Because I am going to slam the government so hard.. just wait. I am waiting for the opportunity to speak about this.. and here it is. I am getting fucked so hard with these changes. I have NO where to go anymore. I dont have money to buy my own insurance, medical supplies or disability coverage..

My peace protesting in Wash DC… yeah I got a few phone calls from that and new friends. But nothing has changedCheck out my road trip across the country to peacefully protest for my healthcare in front of the White House.
melissa divietri

You have a disease and all of a sudden the government has to know every thing about you – bank statements, assets, school documentation.. what am I ?!!?!?! Treat me like a criminal but Im the most loving individual you will ever come across.

Well.. read this post, Obama.. maybe you would get it. I am a future leader, innovator and this is just depressing. I’m keeping my head up, but let;s be real — I am being drained on a whole new level.

My disease does not run my life… I run this life. I get up, get dressed and do what I need to do, everydayNO EXCUSES!

This disease is not going away.. okay? This disease isn’t going to leave and it can only get better if I keep a positive attitude. There is really nothing more that I can do about it.

My message to you.. that hopefully you are able to get something out of all of this.  Maybe after you read this, you might have a lil bit more understanding about my life. Its not all rosey as you think.. Yes > I travel and work all over the world – I have international accounts, I studied abroad, I worked for bad ass advertising agencies, I’ve lived in NewYork, California, Metro Detroit.. the difference is ( I work for this life ) – I research, connect and spend hours on improving my skills. This drive isnt taught in a classroom, this is what I would call street smarts. Be smart at what you want to achieve.. I want insurance and reliable medical supplies ON time.. Am I asking too much??

I’m sick of hiding behind a happy face, this is not an easy lifestyle. Feel blessed I am not the angry person I use to be, with the sassy attitude and the b*tch face. I’m happy to live, I love my life.. I just cant deal with the extra bullshit from the health system.

If anyone has any network with media outlets, please give them this post.

10 COMMENTS

  1. Hi missy, it’s Jacob Babcock! You are such a strong person and I admire you outlook on life with all you have been through!

    Stay strong.

    Best,

    Jacob

  2. You go girl.. I know we never spoke in school but I had a lot of respect for you to go through school with ur head held high. I have a lot of family members that have a mental illness or handie cap disability and it takes a lot to go through life with people judging you. I don’t know what u had to go through but I lost a lot of friends because I would take up for my cousins. I hope this goes far enuf to get to the president and he reads it becaise its true insurance sucks. Keep ur head held high..

  3. You are beautiful woman. You are the future strong woman I want my children to look up to see what strength, beauty and determination is. I love that you take what others would see as burdens and concur them as your positives. Keep on truckin girly! You got this!

  4. I am sending this to all that I know, I really admire your passion,and strength, I have similar issues on a different level but I truly hope your voice is heard and I will do all I can to help make it happen. God Bless, Stay strong, Your right your hear for a greater reason that anyone can see,

  5. Just know you’re not alone in this frustration with insurance. It’s a scary, scary position to be in. I don’t know what you’re going through exactly, but let me just say, damn…you’re someone to look up to! Times are scary. I detest this government and have lost faith in any/every politician. But just know, if you ever need a partner to say “Thanks Obama” in the most wonderful of ways (cough), I’ll be there! It’s not right to take this away from you, especially someone who fights so hard. I don’t know you, but I can sense your strength and determination. And again, if you ever want to rally and I can make it, I’ll be there. It’s not fair. You’re in my prayers and thoughts!

  6. You are so inspirational! Thank you so much for sharing. Stories like yours keep me reaching higher and goals are absolutely nothing without strength and determination. Hope this reaches the right people!

  7. You are such a strong person and you are absolutely right you have no idea how many times dhs has switched my case worker and denied me medicaid when im a single mother with two kids the only way they approve me for medicaid is if im pregnant. Its rediculous i wish i could work there and tell all those dumbasses what i really think of them. They dont think about what siuation we are in or how we feel they go by what the system says they have to do. I think what your doing is awesome we need more people like you 🙂

  8. your amazing. your strength and determination is incredible. i know great things are in store for you. thank you for motivating me. god bless you.

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