October is National Disability Employment Month. This awareness is near and dear to me for many reasons. Not only do I have a disability of my own but I also worked for many years with adults with developmental and physical disabilities get jobs. This year the #ndeam theme is “the right talent, right now.” Although, I think this theme is a bit ambiguous it’s important to not only talk about disability in the workplace, but how we can make change. I can’t stress enough how important state programs, non profits, talking about disability rights and being inclusive in the workplace is. In California we have amazing programs for adults like Department of Rehabilitation where they help disabled adults go back to school and even get jobs.
I’ve worked in programs for disability for many years and have witnessed the injustices and as someone with a disability have been discriminated against. We aren’t just the right talent, right now. We are more than that. But companies and managers need to be held accountable and go through training. I’m tired of being last on the list. I know I’m the “right talent, right now!” My disability does not hold me back and I will not let a job believe that it does either. My other disabled warriors out there we have a lot to fight for still in and out of employment areas.
I turned 31 on Friday. To most 30 years old would be the time to celebrate, and believe me last year I celebrated. But this year was especially cause for celebration. I didn’t think I was going to make it to this birthday. Although, I looked fine, I wasn’t. Due to my Pulmonary Artery Band being too tight (less than 1/2 a millimeter when it needed to be open two millimeters or more) my heart was struggling to pump. If it continued to go without being taken care of or unnoticed I could’ve had valve problems or possibly heart failure. My fatigue was a warning sign that had shown up years ago but kept on getting progressively worse.
I remember about two years ago crying in the car with my mum. We had finally got to see my cardiologist at the time after almost two years of not seeing him. I remember complaining so much of being fatigued and feeling terrible. They decided to do more tests. This was always the answer do more tests but it always seemed like they would come back with everything looked fine. But I didn’t feel fine and I knew I wasn’t okay. I was running on empty and no one could see it. They saw someone who looked good because I never felt like they really considered or gave a second look. I’m no longer with that doctor or insurance. If I was, I don’t think I would be here today.
Last year on my 30th birthday we celebrated with a huge party. During this time we had switched insurances and like usual it was a fight to get the care I needed. They were refusing to send me to a cardiac specialist. A couple of weeks after my birthday I ended up in the hospital with chest pains and extreme fatigue.
After many months of fighting with insurances I finally got the care I needed and ended up at UCSD with an amazing Cardiac team. With many tests they realized that it was my band and it was causing significant blockage and complications. The PA band was too tight and due to calcification it was causing the opening to be less then a half a millimeter of opening to let blood through. Which kind of looked like a hose on high velocity on MRI’s when shown. On August 29th I had my third open heart surgery. They removed my PA band and had to have a part of the area where my band was patched due to the severe calcification.
I made it to 31 this year because of a team of wonderful doctors. I’m able to heal and continue my story.
Want more from Amelia Blackwater site! Check out the Patreon page and consider supporting monthly for certain rewards. Each tier have awesome rewards tied to them. Be on the lookout, as Amelia Blackwater site grows, so do the rewards.
Sometimes we get caught up with social media accounts. We weigh our self worth on how many followers we have. I know I have been guilty of these feelings as well. We believe that if we don’t have the same followers as the person next to us, then we aren’t as pretty, we aren’t as loved, we aren’t as creative. DO NOT BELIEVE THIS LIE.
Your social media account isn’t a popularity contest you have to win and your worth isn’t measured by your followers. Your life is beautiful by the things you do, the people you spend time with, and the creative things you make.
You be you, and keep being the amazing warriors that you are.
Flash back to eight year old me. I had just moved to a new school for the fifth time due to my parents having issues with schools and their PE program and how they treated me. This time was different I didn’t just move schools but I moved to a new town too. The town was so small I felt like everyone knew my business. Quickly within a week I was the new girl who had some freaky heart condition that meant she couldn’t run or do PE. It was exacerbated by the fact that I ended up having surgery that year. It was a lot for third graders to understand so I was bullied and because I looked normal I was accused of “faking it” by other kids.
When I had my second open heart surgery when I was fifteen I remember having such a hard time in the hospital and yelling at my family and staff that I just wanted to die. Afterwards, I suffered severe PTSD. Crazy thing was that I never got help.
I’m not the only one with a disability who has stories like this, yet again our stories are under represented. Instead we are to be pitied or represented in film as being honored for ending our lives. Don’t believe me check out “Million Dollar Baby,” “One Flew Over the Cookoo’s Nest,” and “Me Before You”
When we leave the hospital they gloss over depression and there are no systems put into place. When I left the hospital recently they asked questions in my check out about in past three month if I felt anxiety, depression, or suicidal thoughts, but they asked them in front of guests. I tried to answer honestly, telling them that I had been depressed and anxious thinking maybe they might refer me afterwards but nothing came of it.
As we end this week, check in on your friends who have chronic illnesses, who have disabilities, who have intellectual disabilities. Don’t just do this because you pity them but because you want to be more involved in their lives. We are more than our disability. I can’t express more that we need to support people with disabilities and raise awareness.
When I’m feeling well, I don’t ever think of my illness. It is something that exists back in my mind, a second thought. Ordinary drama fills my everyday thoughts. I create without boundaries, I love without worry, I live.
But when my body feels like it has betrayed me, like it is Judas giving me his last kiss. My illness is the only thing I think about. It is what comes out of my mouth each time I am asked a simple question, “How are you doing? How was your weekend?” It is as if I have spilled a can of worms upon someone’s lunch plate when they were just trying to make small talk. Well next time “Diana” don’t ask me such a loaded question.
Part of me missed it when I was closed mouth about what I went through with my health. I don’t think people know how to deal with me. I feel this guilt all the time because I either feel like I shared too much with someone or I seemed too distant and a little bitchy. There isn’t much of an in between.
What are your thoughts? Do you share about your experiences with illness or mental health with family and friends? Or are you more reserved about what you go through?
It’s been a bit since I’ve talked about mental health but I didn’t want to go through this month without sharing my story and break some stigma “like how I like to do” about suicide. I’m not going to gloss over the details. I’ve thought about suicide before. If you’ve seen some of my previous posts I’ve talked about how I used to self harm and had an eating disorder. Most of these were my way of not just coping but feeling like I didn’t want to be on this earth anymore.
Sometimes the worst is when you lose friends by suicide.
What have I learned from all of this, is a terrible cliche saying, my life is full of ups and downs and sometimes way, way, downs but this life is fucking beautiful. All that pain I’ve experienced has created some amazing things in my life and I’m so glad I continued to live. Please remember your life is amazing. Yes there are going to be sometimes when you really think your world is going to end and you are scared of going back to that darkness, but it’s temporary.
Ending your life is permanent
September 10th is World Suicide Prevention Day.
What does that mean? It means sharing stories, bringing awareness and ending stigma around suicide. Making sure that those who are feeling suicidal have a place to feel safe and talk things through and realize that ending their life isn’t the answer.
This is a world issue! I challenge everyone today to open up a dialogue about depression and mental illness and suicide (make sure this in a safe space) Talk to your friends and family and make sure that they have resources to stay safe whether it’s a hotline, friends, family, or other distractions.
After spending a great amount of time in the hospital or in doctor’s offices from the time I was born I’ve gotten done it down to a science to what to bring to the hospital. It’s great to have a reference list for a what to bring to the hospital. Sometimes it’s only a doctors appointment and you just need a list of questions and then sometimes you are in the hospital for a week or more.
Weighted blanket and regular blanket
Photos and memories from home
things to decorate my space if I’m going to be there for sometime ex. lights,
iPad and ipencil
Portable phone charger and chargers
Couple of books
Leggings and loose fitting T-shirt’s and undershirts, underwear, socks
Health and Bathroom
Bathroom kit – toothbrush and paste, face wash, dry shampoo and feminine products are a must
makeup like coverup, mascara, eyeshadow if needed
Notebook and daily planner for any health related stuff
List of questions to ask doctor – whether it’s at the doctors appointment or while you are in the hospital
Notebook so you can keep around to write any questions you may have to ask your health team, nurses, doctors, anyone while you are in the hospital
What do you bring to the Hospital or Doctor appointments?
Although CHD Transposition of the Great Arteries is my main illness it isn’t my only chronic illness. Many of those with chronic illness, don’t just live with one chronic illness, most of us have multiple chronic illnesses and mental health issues.
I always feel weird about listing off my multiple illnesses. Maybe it’s the stigma that surrounds those with multiple illnesses. We are made feel like we are complaining too much, that we are hypochondriacs.
I have a congenital heart defect, but I also have chronic migraines, I have chronic pelvic pain (with possible endometriosis), I’m autistic, I have anxiety disorder, OCD, I deal with depression, I have recovered from an eating disorder, and mental health issues.
My other chronic illness warriors out there how do you feel about sharing your multiple chronic illnesses? Do you feel like there is stigma around it?
I am 1 in 100. I was born with d-Transposition of the Great Arteries/Vessels (TGA). What is TGA? TGA is when the two main arteries that carry blood are switched. The blood pathway is impaired because the arteries are connected to the wrong heart chambers. There are two ways that the blood flow cycle ends up either
– body-heart-body in which the blood is not being routed to the lungs for oxygen
– Lungs-heart-lungs which the blood is not routed to the body to deliver the oxygen
There are several surgeries to correct this defect. Most who are born with this defect now usually have what is called an arterial switched which started being done routinely around the mid 1980’s early 90’s. This is when the pulmonary artery and coronary arteries are switched back to the normal position.
The second surgery to correct the defect is a mustard or Senning procedure. This is where they create a baffle between the atria which redirects the oxygen rich blood to the right ventricle and the aorta and the oxygen poor blood to the left ventricle and the pulmonary artery.
I currently have the later of the two, I still have a mustard procedure in place with a band on and a stent. I’ll post more of my story about CHD later on in the week. ❤️ sending love to all warriors out there. 💕