CONTRIBUTOR: Saida Mahoney
***TRIGGER WARNING*** Contains references to mental, physical, and sexual abuse!
Hello everyone my name is Saida Mahoney. I was born on September 22, 1996. I am Jewish. I am 25 years old and I am also from California, born and raised.
I am a full time student in college I am a music, dance, theatre, film and songwriting major I also enjoy doing cheer as well. I’m proud to be a performing arts major. My goal is to graduate college and continue my performing arts studies at the university level and have a professional career doing music, dance and theatre.
- I will also be starting my journey in participating as a Athlete with the Special Olympics Of Northern California
- I am also part of the Aktion Club and I am serving as President Of the club
- I am also proud to be part of the Miss Amazing pageant I am thankful that I was crowned the 2021 California Miss Amazing Miss Queen title I am forever grateful. I was also able to go to the Miss Amazing Nationals Summit in Nashville it was such a huge wonderful experience I am forever thankful and grateful that I got to participate in the ceremony. I am honored that I was able to represent my state at the nationals
- I love doing music, I love dancing and theatre it means the absolute world to me doing performing arts and I couldn’t ask for anything better.
- I also go to music school as well
- I am part of the Bay Area Thrive Program
- I also love to play sports and travel
When I was in high school I was in choir and theatre as well as dance.
My life has had numerous challenges I have went through a lot growing up, over the years. I wanted to share my story and bring awareness of what I went through so that whomever else is struggling with any medical conditions or disability, I hope he or she can find comfort and support in reading this.
I have 3 rare chronic complex diseases that I am diagnosed with. I am also diagnosed with multiple disabilities, chronic medical conditions, mental health disabilities, and physical disabilities. I was born with a rare chronic congenital genetic disease called Partial Trisomy Of 8q, partial 8q duplication, or you can call it Partial Trisomy Of 8q, and or Partial Duplication Of 8q and lastly Partial Duplication Of 8q Syndrome.
My genetic condition is congenital meaning I was diagnosed with it since I was a baby. It is also known as a chromosomal duplication disorder I have copies of chromosome 8 and it is longer than it’s supposed to and the reason why is because it has an extra copy of some information due to how it affects me and how it affects my DNA and cells. My condition has affected every cell and my very DNA. I was born with anomalies due to my genetic condition My genetic disease affects my growth stature due to my height level.
My genetic disease also causes me to have oral dysphagia it affects me in different ways when eating and drinking, and it also cause me to have a few facial abnormalities as well. I have craniofacial abnormalities due to my genetic disease. It also caused me to be delayed in walking I wasn’t able to walk right away or talk well when I was a little girl. My genetic disease caused me to be both physically and mentally handicapped.
In my case my genetic disease is a mild and moderate medical condition. I also have asthma and scoliosis.
When I was 2 years old I had to have emergency surgery on my lung due to a ring defect as a result from my genetic condition and also due to the anomalies that I was born with. If I didn’t get surgery I would have died.
My genetic condition is a complex genetic disease it also affects my brain function, how it functions, and all the ways it causes me to have numerous difficulties and challenges in life. My genetic disease is a very, very rare condition and it also causes me to struggle on a daily basis in life.
My genetic condition also causes me to be handicapped due to how my genetic disease affects my brain function — it is also a neurodevelopmental disability due to all the ways I have been affected by my condition. It also causes me to have a few difficulties with how I do intake with my eating and drinking
As I get older I will have either a few or some changes due to my genetic disease as time go by
The anomalies from my genetic disease is what cause me to be at risk of other challenges in life due to my genetic condition and the chromosomal abnormalities I was born with and continue to have. My genetic disease causes me too have differences in my brain and how my brain is developed and my skull It also causes me to have differences in my spinal cord and how it’s shaped due to how it’s shaped and developed.
I don’t let my genetic condition stop me from doing anything!
I have also been diagnosed with another rare chronic disease called Stage 1 Hidradenitis Supprativa (HS) also known as others such as (Pyodermia Sinifica Fistulans, Velpeau’s Disease, Fox Den Disease,
Verneuil’s Disease, Acne Conglobata, Apocrine Acne, Apocrinitis.) Having HS is a rare chronic illness and is also a rare complex disease.
I am undergoing different treatment plans and I recently started injection treatments to help get my HS under control so I can get better, receiving many treatments. I have been in the hospital lots and lots of times due to my disease. Having HS is a very overwhelming condition to have.
My HS has caused me to have pain and discomfort where I had to go to the hospital to get help to find ways for it to get better because I was in so much pain. I am currently getting different treatments for my HS. When I am not in the hospital, I have an in-home treatment plan for my disease for when I’m not in the hospital.
I will have painful cysts and scars from my disease too. When I look at my scars I view them as my “tiger stripes” because I am fighting hard and I am in the biggest battle ever with my disease.
I have been having so much pain, bleeding and swelling and discomfort due to my disease and it has been very very hard. I will continue to fight this overwhelming disease and fight hard. As I get older I am hoping that my HS doesn’t get worse, as time go by, with it ending up with it becoming a full on severe medical condition for me.
Recently my HS have progressed and it is now a Stage 2 (moderate) disease. I will be receiving a strong treatment plan to help my HS get better so it can start improving. The rough, overwhelming part about my HS is that it is moderate to severe disease.
I am also hoping that I don’t end up having to get surgery done for my Hidradenitis Supprativa or any type of operation done if I ever do need to have surgery for my Hidradenitis Supprativa I will keep my head held up high and be strong
My medical team is working very very hard to prevent my HS from reaching the 3rd and final stage. I am due to get surgery done due to my HS, having to get 3 surgeries done I recently had my first part of surgery done.
I am also diagnosed with a third chronic rare disease called Vascular Ring. The formal name for my rare disease is called Congenital Heart Disease (CHD). Vascular Ring is a condition that affects the heart of how it is developed and shaped and more. I have my Vascular Ring disease due to my genetic disease. Due to my Vascular Ring condition, my heart is not shaped and developed like the average heart. My cardiologist said I don’t need to get any surgery done for my disease and I don’t need any medication.
My cardiologist said if anything changes where things get so bad for me where I can’t do anything that I do and can’t eat food that I normally do, I would have to get surgery done for me to be able to live better.
Being diagnosed with 3 rare chronic diseases is hard but I am going to fight harder than ever and I will never give up I won’t back down and I will not go quietly!
I have went through so much bullying due to my genetic condition and I have went through losing many, many friends due to my genetic condition because my friends told me that they didn’t want any disabled person around them.
Sadly there are no cures for my rare diseases, my disabilities, and my medical conditions. I hope someday that will change. It is also overwhelming sometimes as well both emotionally and mentally. I am also physically disabled.
I also have struggles of my mental health disorders: Post Traumatic Stress Disorder (PTSD) , Generalized Anxiety Disorder (GAD) Panic Disorder, and Major Depression Disorder (MDD). I also have an eating disorder called Binge Eating Disorder (BED). I also struggle with Social Anxiety.
I used to self harm for 9 years years due to emotional pain from severe bullying and I was always feeling depressed. I used to want to commit suicide by jumping from the Golden Gate Bridge and often times I struggled with wanting to commit suicide by using Motrin. I also tried to commit suicide numerous other times, but I chose not to do it. I found music and it saved me!
I had went through a very very difficult moment when I had wanted to die and I tried to commit suicide when I was young due to all the difficulties that I have dealt with from bullying. I used to struggle with self harm too for an extremely long, long time. I was struggling with severe depression and I felt that I didn’t have a worthy life.
My PTSD comes from all the abuse I went through with all the bullies I have dealt with growing up and abuse from a friend, as well and the sexual assaults I went through: being molested at 9 years old, being raped at 12 years old and going through domestic violence as well. I went through so many difficulties and I was dealing with so many flashbacks and panic attacks and so much more that caused me to need professional help right away. I struggle with my anxiety due to things that are hard for me.
I also have another medical condition Tourette’s Syndrome (TS) it is a neurological disorder that make everything very difficult and challenging for me everyday 24/7. I struggle with having my tics and vocal tics and motor tics as well it makes going to school hard and it makes social interaction even harder. I struggle with having tic attacks when I am very very anxious and I often feel like I lose full control of my body when the tic attacks happens.
I also deal with getting discriminated from going to other colleges and I struggle with not being able to be welcomed to do certain activities and programs due to my Tourette’s). I have lost so many friends due to my Tourette’s syndrome.
Another disability of mine that I struggle with is having Autism Spectrum Disorder. I have Aspergers Syndrome. It makes certain social skills and interactions hard. I also struggle with knowing how to handle conversations too. I also struggle with stimming and so much more!
I struggle with other things related to my Aspergers. I struggle with my NVLD as well .
I am thankful to have a good treatment plan for my TS and I want to be able to help others feel that they are not alone with TS.
I have other developmental and neurodevelopmental disabilities that I am diagnosed with
I am also diagnosed with Learning Disabilities as well.
Being diagnosed with multiple disabilities chronic medical conditions, Physical Disabilities and mental health disabilities is very very challenging and overwhelming and sometimes rough I have learned how to continue to stay strong through it all and keep my head held high
I am so thankful for all of my wonderful medical teams who are helping me out with all my disabilities and my chronic medical conditions and so much more I am also thankful that they are supportive towards me emotionally .
I will stay strong and keep fighting hard. I have learned how to keep fighting and to stay strong through all the difficulties. I am a survivor of all the difficulties and pain I have dealt with over the years and growing up and dealing with my diagnosis:
- I am a Survivor of Self Harm
- I am a Survivor Of Child Abuse
- I am a Survivor of Suicide Attempts
- I am a Survivor of Domestic Violence
- I am a Survivor Of Child Sexual Abuse (CSA)
- I am a Survivor Of Child Sex Trafficking also known as Human Trafficking
- I am a Survivor Of Emotional Abuse
- I am a Survivor Of Child Sexual Exploitation
- I am also a survivor of sexual assaults
It was a very very extremely traumatizing and emotional experience for me going through everything I went through. I learned how to get through everything and get myself help and resources. I want to giveback to help others feel like they have a strong support and advocate.
Here’s all the abusive things I have gone through:
When I was a toddler I was both sexually abused and physically abused by my teacher assistant. I was also molested on the school bus I was on when I was attending my summer program.
The teacher assistant I used to have was always hitting me and pinching me. She also used to scratch me as well other times she would touch me in areas where I didn’t want to be touched. She would also come to the bathroom with me and when I went into the stall she came in and she would grab me and touch on me.
It was a very painful experience when I asked her why she was abusive towards me she said she hates disabled people and disabled children and said that I didn’t belong in this world.
I was involved in a summer camp when I was nine years old and I was playing board games with my friends from my camp and it was almost snack time. I was getting ready to go get my water bottle and when I walked away from the game the camp counselor who was 30 years old had kept making sexual references.
He kept saying that he wanted to touch me and I told him no I told him no twice he ignored me completely. He ended up grabbing on my vagina and my boobs and it was so painful. He was also physically abusive towards me and emotionally abusive too.
These are following things that happened to me when I was only ages 9, 12, 16 and 17 years old
I was nine years old when I was abused and molested. I was going to summer camp and the camp was going good. In the beginning I had friends I would do outdoor activities with and I enjoyed using the computer. I also did trips with my friends as well. The camp counselor was 30 years old at the time
The camp counselor started to hang around my friends and that counselor started to stare at me. I was always feeling so nervous and overwhelmed because he was not looking at me in a good way at all!
At camp, my friends and I did outdoor activities because the weather was nice. We spent a few hours outside, going inside to enjoy our computer games and board games when we were done outdoors. When we were inside, I went to the computer when everyone went to their first snack break. I got on the computer because I wanted to go on my favorite websites. The camp counselor was right behind me and he was watching everything I was doing.
He told me that I had to get off the website I was on and I told him I didn’t want to. Then, he got very angry, so he disconnected the computer and he hit me with the keyboard. He ended up punching me and he slapped me. Every time I went to the computer, the counselor hit me with the keyboard.
When I was outside to the playground, that camp counselor would throw rocks at me. When I was able to get on the playground and went to the 2nd floor level, the camp counselor ran up to me and pushed me off the deck level. I ended up landing on the thick memory foam mats at the bottom. Thankfully, I didn’t get injured seriously. There were times where he would hit me in my back with a big stick that he used to carry — it was such a painful experience!
The camp counselor was also abusing me emotionally too he used to always call me handicapped and he used to call me a sick dog. He always talked about my learning struggles, used to call me lots of names, and criticized me about everything.
My friends would come to me and asked me why I was in tears, after episodes of abuse. I was way too scared to tell them what happened
My friends decided to do the board games with me. We did that for a while, but two hours later they decided to go for the last snack and water break.
I had my water bottle in the other room and I left to go get it. When I got to the the room to get it the camp counselor was right there and when I tried to run to leave the room the camp counselor pushed me up against the wall and he ended up molesting me. He grabbed my vagina and my boobs and it was extremely painful. I ended up being swollen and in so much pain where I couldn’t move and walk. He ended up doing it again to me for the second time during my last week which was the second week of camp. After everything that happened to me I left the camp and went to a brand new camp.
I was in so much emotional pain from the camp I stopped going on my favorite websites. I stopped playing the board games I used to play with my friends. I changed up my look completely I didn’t like my look I had any more. I stopped wearing certain shoes because I didn’t want to look how I did when I was going to the camp. I was depressed so much I had days where I did not want to eat at all and I didn’t like having snacks either for a while. When I went to the new camp the director had to give me my water bottle cause I was too scared to get it myself.
I went through years and years of having this pain inside me for so long I ended up having a meltdown. I had moments in my life where I literally just wanted to die I was feeling so depressed. I was only 9 years old at the time.
The other painful traumatizing moments I went through was when I was 12 years old and my first ever boyfriend I had at the time raped me. He was 14 years old at the time. I went to his house to visit him and his mother had left the house and I was the only female in the house it was himself and his father. He took me in his bedroom because he wanted us to play video games on his Playstation and when I went inside his room he locked the door. I was so nervous when he locked the door. He then asked me if I wanted to have sex with him. I told him no not at all I didn’t want to have sex at the age of 12. He pushed me on his bed and got on top of me and he had sex with me after I told him no. He forced me to have sex with him I told him I didn’t want to. It was a very very painful experience.
The second sexual assault that happened to me was when I was on the bus. The bus driver was a man. It was myself and a older boy. I was 16 years old and he was 22 years old.
The boy kept making so many remarks too me. He kept saying that I was hot and that he wanted me and then he told me that he wanted to grab me and grab my boobs. I told him no, so he asked again and I told him no again. I explained to him that I was not going to give him no consent I didn’t want anyone grabbing my boobs
He ended up coming to my seat and he grabbed me so hard and he grabbed me by my boobs so hard that I was in pain. I was in tears! The bus driver had gotten off the bus and allowed it to happen. I felt so ashamed after it happened I was afraid to tell anyone of what happened.
The third time I was sexually assaulted was by my boyfriend at the time he was starting to mistreat me and he decided to pin me against the wall. He said he wanted to try new things on me. He said he didn’t want to do anymore hugging and he said he wanted to mess with my vagina. I told him no. I told him I don’t want that to happen and he didn’t have my consent and no permission to do so. He decided to pin me to the wall and he messed with my vagina. He was literally hurting me so bad because he had his fingers inside and I couldn’t even move cause the pain was bad. I was so scared to tell my school counselor and teacher — I was too scared and afraid to tell anyone!
The fourth time was the worst moment my boyfriend at the time threatened me to do oral sex with him and I told him no I will never do that. He forcefully put my mouth around his penis and when I tried to move my head he kept trying to keep my head on it. When I was finally able to break away from the grip, he hit me. I went to a different area and my male friend and his good friend he ended up grabbing me after I told him no.
My boyfriend used to also be physically abusive towards me he used to always punch me in my stomach, he used to hit me on my shoulder and he also used to hit me on my neck too. He used to punch me in my stomach so hard that it was hurting me so bad, I literally wanted to cry when he punched me. I was afraid to react because I didn’t know what he would have done to me. I tried to leave the relationship the first time. I was scared when I stayed in the relationship, but he continued to mistreat me.
Being in a relationship that was full of domestic violence and other forms of abuse was so hard and difficult for me emotionally and mentally, I was so traumatized. I was in so much pain from everything that I ended up self harming just to numb myself from the pain I was feeling. I was a silent sufferer dealing with all of my pain and it was getting harder on me. It got to the point where I couldn’t breathe cause the emotional weight was so heavy. He was both physically and sexually abusive towards me and many other things as well.
I was able to completely leave the relationship after two years. I was able to get strength to be able to get help and get myself the best resources. I now have myself a very very strong support system
It was very very hard, emotional and difficult experiences for me. It was very very traumatizing for me to go through and live with. There were times I used to think that everything was my fault. Once I got older, I learned that it wasn’t my fault at all.
I have lived for decades as a silent sufferer. I was dealing with the weight of the pain for such a long time that as I continue to get older I couldn’t take the weight anymore. I went to my doctor appointment I had scheduled and I reached out to my mother and told my mother everything. My mother knew about some of the things I went through but not all because every time I wanted to open up about everything I ended up getting so emotional.
When I told my doctor about all the abuse I went through she was very supportive and she made me feel so much better and she told me about this wonderful organization called RAINN, which stands for Rape, Abuse & Incest National Network. When my doctor told me that she wanted me to reach out to RAINN it was at that moment that help and hope was on the way. I was ready!
I dialed the RAINN hotline number and I got to talk to the advocate about everything I went through and the advocate was so supportive. I got connected to numerous support services and support groups and it was such a huge healing process and healing journey for me. I felt so much happier and I felt free from all the emotional weight that I carried for so many years. It felt so good being able to get help and having support from my amazing mother and my friends and my fantastic medical team as well.
I am also thankful for the National Alliance on Mental Illness (NAMI) as well. I have learned how to stay strong and to never give up and I am very very inspired by my music artists and bands who I have grown up listening to. I am a SuperHero who has fought through all of the pain and struggles and so much more.
My music artists and bands who have inspired me so much, motivated me to be brave, and inspired me to raise my voice and follow my dreams are: the Eagles, Justin Bieber, Glenn Frey, Don Henley, Linda Ronstadt, Katy Perry, Dolly Parton, Timothy B Schmit, Joe Walsh, Pat Benatar, Reba McEntire, Dan Fogelberg, Dottie West, Lacy J Dalton, Connie Smith, Shelly West, Porter Wagoner, Tom Petty, Poco, ZZ Top, Tammy Wynette, Hank Locklin, Kenny Rogers, Garth Brooks, Little Big Town, Tom Petty, Journey, Foreigner, Jack Tempchin, Bob Seger, Foreigner, Journey, Peter Cetera, KT Oslin, Demi Lovato, Van Halen, The Doobie Brothers, Michael McDonald, Martina McBride, Trisha Yearwood, Huey Lewis and The News, Merle Haggard, Carla Olson and The Textones, Jackson Browne, Loretta Lynn, Vince Gill, Amy Grant, JD Souther, The Beatles, Steve Perry, Elvis, Dan FogelBerg, Demi Lovato and so many more artists and bands.
I am so thankful for my amazing family and friends as well.
I wanted to share my story and bring awareness to my diagnosis so that others who are going through the same thing don’t have to feel alone or overwhelmed. I don’t want anyone to be struggling. You are not alone and you are never alone. #DisabledSurvivorsMatter
My Wattpad username is WONDERGIRLSAIDA. Here are the links to my 7 books I have proudly written and published, on the WattPad platform:
If you ever want to reach out to me my Twitter is @WONDERGIRLSAIDA@SUPERGIRLSAIDAM @AGIRLNAMEDSAIDA and @AHERONAMEDSAIDA my Instagram is @WONDERGIRLSAIDA@AHERONAMEDSAIDA @AGIRLNEDSAIDA @SUPERGIRLSAIDAM ( TikTok @WONDERGIRLSAIDA@AHERONAMEDSAIDA)
Like my official Facebook page https://www.facebook.com/WONDERGIRLSAIDA
Follow me on my official podcast channel https://anchor.fm/wondergirlsaida
I am a Survivor!!! I am a Fighter!!! I am a Warrior!!! I am an Advocate!!! I am an Activist!!! I am a Superhero!!!
Thank you so much for reading my story and thank you so much for reading my e-book novels and listening to my podcasts. I really truly appreciate it!
***Received on September 19, 2022 and published with the permission of Saida Mahoney!***