Sometimes you can ” recognize ‘ someone by their eyes This happened to me on Tuesday on the way to my wheelchair evaluation; both mom and I were taking paratransit The driver let us know there would be another pickup before we were dropped off which is pretty typical of paratransit.. What I didn’t expect was for the whole vibe to change once he was picked up…
As soon as he got on the bus I the sensed someone glaring at me it was obvious he was trying to make eye with me. Only for me to make eye contact with him for a spilt second only for me to recognize him as a disabled guy I went to school with in middle school that I had to report for #sexualharassment
To myself I was like there no way I am encountering him yet again (At a point the paratransit driver said his name confirming my suspicion as to who it was.) I didn’t even say anything to mom until we were dropped off at the occupational therapist office.. Out of concern it would just increase both of our anxiety levels. I just did my best not to make eye contact with because it was obvious he seemed to get a weird thrill out of trying to make me look at him
This wasn’t the first time I have encountered him since the incidents in middle school. I encountered him again in high school ( although he never came near me because he knew I would report him.) Also because of a combination of circumstances ( my high school knew that there had been prior history between us.)
Sadly though he was inappropriate with another disabled girl at my high school. I only know because the teachers came and talked to me to make sure there have been no other inappropriate touching or creepy comments made towards me since our history in middle school
I even encountered him at community College when I was ironically enrolled adapted personal safety of all things I told the professor I never wanted to be partnered up with him; given our history
I even made it clear I would drop the class if it was going to be a problem , she assured me that wasn’t a problem I even telling me she was glad I made her aware so I myself as well as other women weren’t put in unsafe situations during the class. I was grateful for this reaction.
sad to say in middle school it wasn’t taken seriously (my teacher who was disabled herself ) Had more of the attitude he has crush on you type thing. Also because he had challenging childhood ~ she felt sorry for him. I suspect she also thought because he disabled that he wouldn’t or couldn’t be inappropriate with females . It had been years seen him but that glaring creepy look in his eyes was still just as unsettling as it was when 13 or 14 I share this as a reminder to all women to be mindful of your surroundings and if something about a man’s behaviors feels off or unsafe trust you instincts. This goes both non disabled and disabled males .
Started writing this on July,2, 2026~ Triggering warning suicide loss discussed – firearms mentioned if you are struggling please reach out please #988Lifeline And know you are not alone
Had to take a break not just for myself but also for our Nikki sake given the time of year around the Fourth of July is stressful for all of us. I have never really cared the fireworks that people buy and set off themselves because of my exaggerated startle response related to my cerebral palsy initially it was just a solely physical response to the loud noises. However since my father’s suicide in 2012 (that involved use of a firearm .)I now also have a strong reaction related to #ptsd many #suicidelosssurvivors that loved ones deaths involve use a firearm often struggle with this time of year. This year I was definitely even more over the 4th of July than usual . Due to what has happened to this country under this current administration on the 250th birthday of our country the fact that yesterday there were images of masked white nationalists out in the open on public a bus caused a weird grief reaction in itself. I really don’t recognize this country anymore. Not mention that Donald trumps Fourth of July speech was one of the weirdest things I have ever seen. (Then again there is nothing normal about Donald Trump and his followers.) Yesterday I couldn’t help but start laughing as a nervous response when the YMCA – by the village people came on after his speech for someone who is so hateful towards the LGBTQ community he sure likes that song. I can’t help but wonder if he has internalized homophobia, I think it is quite possible he is bisexual. Under normal circumstances I would feel sorry for someone if they had hatred and self loathing around their own sexuality but given he is malignant narcissist that has caused pain to so many I find it extremely hard to have empathy for him.
Presidents are supposed to bring people together not push election conspiracy theories about how the 2020 election was stolen (which most people know it wasn’t )or to push for legislation that would disenfranchise voters.
The SAVE Act (Safeguard American Voter Eligibility Act, or SAVE America Act) is a federal bill requiring citizens to present in-person documentary proof of U.S. citizenship (such as a passport or birth certificate) to register to vote in federal elections
The reality is that is very little voter fraud and non citizens are not able to vote no matter how many times trump says it doesn’t make it at all true.
The save act is nothing more then an attempt to rig the election in trump and republicans favor because they know if they don’t cheat they will undoubtedly lose this November, I foresee another January 6th like event happening during the midterms
Navigating a disability after a significant life stressor like a suicide loss ,looks very different than it did prior to my loss. Even for someone like me that has been disabled since birth.
People who experience deaths that are sudden and violent in nature experience #complicatedgrief that last longer and often requires the guidance of a mental health professional; where as uncomplicated grief does not. ( example of #uncomplicategrief is my prior losses of both my grandparent’s on my moms side.)
It is not that uncommon for people with no history of any underlying health conditions to later develop health conditions after a traumatic loss I have known fellow suicide loss survivors that have even become disabled after their losses.
Although this isn’t fully medically understood it is believed that it is correlated to the impact of #chronicstress on the body. Living with a chronic illness often comes with a certain level of #grief when you have a body that doesn’t always respond in the way you would like to; not all grief is related to a death. ( examples of non- death related grief include, relationships, job, loss, health etc. I will be honest I hadn’t given much thought to non- death related grief until my original therapist brought it to my attention after my dad’s death . I believe this has to due with the pressures to always be positive as a disabled person I do care for the phenomenon of #inspirationporn
Inspiration porn is a term coined by the late disability activist Stella Young. It refers to media and narratives that objectify disabled people, framing them as “inspirational” solely to make non-disabled audiences feel good or to motivate them, rather than acknowledging disabled people as equal, three-dimensional human beings
sadly sometimes disabled people even play into this which in my mind does everyone a disservice for both the non-disabled and disabled communities because it can make it more difficult to have authentic conversations about the complexities that come with living with disability, that are not always pretty, fair or positive.
This is particularly true given we are 6 years into a #massdisablingevent that people are willfully not acknowledging , the amount of mental gymnastics the medical establishment is doing to avoid to dealing with the harms caused by #covid is staggering, A few days ago both mom and I went to the doctor office to go over routine blood work we were both masking ( as we always do health care settings. ) The physician assistant who has been taking care of us both us for a long time .. Who is at least in her 60s if not her 70s was unmasked which wasn’t a surprise; What was a surprise was when when she saw us masked and actually said it is good you are still masking, even going as far as to say she probably still should. She even paused for a minute obviously trying to decide if she wanted to grab and put on a mask . Sadly even though she admitted she should: she untimely still decided not to mask. Whether it was out of convenience or some sort of emotional trauma response related to COVID I know the pandemic was and still is very traumatic for healthcare workers. Still the whole thing made me very sad for us all. It made me want to interact with the healthcare system even less given this is attitude towards mitigating illness
I Have seem a lot of backlash (in comments on social media ) directed towards both #pridemonth which is celebrated in June and #DisabilityPrideMonth which is observed in July in the given #AmericansWithDisabilities was passed in the United States on July, 26,1990. I never thought I see so much hate and anger over one simple word (pride) I have seen so many disabled people that want to remove the pride part of disability pride month over nothing more then their own #homophobia wanting to call it ADA awareness month which completely dismisses the fact that we are global community and #DisabilityPrideMonth is not just for those us of in the United States or solely based on when the Americans with disabilities act was passed I also have seen people wanting to call it disability awareness month stuff long those lines.
Any disabled person who carries that level of animosity and lack of understanding towards the LGBTQ community is just sad . Marginalized groups should be supporting each other not hurting each other .
Some of my dearest friends are part of #lgbtqcommunity they are the kindest and compassionate people I have ever met: I feel extremely grateful to have them in life; because of intersectionality many LGBTQ people are also disabled, All people have multiple aspects to their identity that impacts how they are treated by our society It is definitely disappointing to know that some in the disability community are being hateful and exclusionary towards those who are LGBTQ.
I am also troubled by the amount of internalized ableism I am seeing within the disability community some disabled people seem strangely angered by those of us that choose say disability pride month as if there is nothing to be proud collectively as a community.
-Internalized ableism –
occurs when disabled individuals absorb and unconsciously apply society’s negative stereotypes and prejudiced values about disability to themselves. It involves measuring your self-worth by able-bodied standards, feeling shame about needing accommodations, or believing you are a burden.
Many disabled people if they are honest with themselves have to navigate the realities of their own internalized ableism myself included. After reading some of the comments of disabled people being so down on themselves, sadly some even think it is ok to use the R word to describe themselves. Which is to me little cringy, given there better terms such as intellectual disabled the term Mental retardation was originally used in a medical context and is extremely outdated and given the R word and variations of it are used as a slur against those with intellectual disabilities it is important that as society when we know better, we do better I say this baring in mind that in my case my #cerebralpalsy does not impact my cognitive abilities. My body just likes have a little fun with me and do some weird things in terms of my neurological system. I mention this because the rate of people of with cerebral palsy that have physical and cognitive impairments is about 50 percent. So it important to recognize that not everyone with the same condition is impacted in same way.
In reading the comments it made a little sad to realize just how many people in the disability community have internalized ableism that gone emotionally unprocessed and unchallenged.
As much as it hasn’t been easy or pleasant to deal the amount of ableism and lack of acceptance particularly on my dads side of the family was so blatantly obvious that once I talked about it in therapy, that my original therapist said there is absolutely nothing normal about how they treated you. Making it abundantly we were going to have to emotionally process and deal with that. Unfortunately I suspect that many disabled people do have safe people around them to point out the harm that comes from internalized ableism
With all that said please practice #selfcare during this disability pride month given just how weird things have gotten in our culture and please be kind to one another, lashing out at one another helps no one☮️️
I have always tried to talk about the realities of having a family member with a mental illness as authenticly as possible When it comes to Thomas weston Jr. ( my father who died by in suicide in 2012
The truth is he wasn’t a healthy or emotionally constant father even before our estrangedment. when walked out of my life abruptly in 2008. . I can honestly say given what a know now about the extremely unhealthy family dynamics at play coupled with the fact that he wasn’t engaging in treatment for bipolar disorder. It was absolutely that right thing to do to protect myself from him. Given how emotionally unhealthy he was. . Frankly I am beyond grateful I did so.
The sad truth is he an exampe of what I should not tolerance in terms how he treated women- I was even actually told as much by my original therapist.
The reason I feel it is important to share this is because his on side of his family there is extremely deeply rooted tendency to present situations or themselves in a ways that are far from truthful I want to encourage anyone that feels it necessary to protect yourself from a mentally il family member ~ trust you instincts Mental illness is an anexplanation ~ that in no way makes the unhealthy behaviors ok.
Hurting people can and do very much hurt people. This was the case for my father he never dealt with the pain of having his father abruptly abandoning the family at age 20. I do not remember my grandfather. I was only a baby when he left. His actions would very much impact my life, however, as my dad would abruptly repeat the cycle, walking out on my mom and. I when I was age 19. I write this 12 and a half years to the day that he died by suicide. Both my father and grandfather had #bipolardisoder that they were not engaging in any treatment. I share this for those experiencing a #mentalillness as much as having a family member who is experiencing a mental illness.
If you are a person dealing with mental illness, please reach out for help and engage in treatment. You are not only hurting yourself but also those who love you.
To those who have a loved who is experiencing a mental health crisis.. Sadly, you can not force someone to engage in mental health treatment. You can only control your actions and behaviors . Sadly, that might mean having to emotionally separate yourself to prevent being further harmed due to exposure to unhealthy behavior I was estranged from my father in the 4 years prior to his death.
Just to anyone struggling please reach out #988Lifeline #youmatter
As much as I am relieved that we can get past the question, is Biden too old to serve a 2nd term? The irony isn’t lost on me there is very much a double standard at play because Donald Trump is only 3 years younger. After the debate many people and media panicked; Granted president Biden did not have the best night . I genuinely do think it would be difficult to respond to a pathological liar at any age.
The reality is I believe ageism and ableism played a key role in the end of the Biden candidacy/ i also think Biden stutter altered public perception negatively. Joe Biden is a decent man. He came into office at a very difficult time in history and served us well.
That said, I very much believe ending mask requirements at the very least in healthcare settings was a big misstep on the biden administration part. The public emergency has ended. This in no way means covid is gone. Covid is airborne and there needs to be more done in terms of prevention, as well as to help those living with long covid. Covid is mass disabling event. I know many would rather say covid is over, because that would be more simple. In reality life and the world we live in is anything but simple. As a person living with cerebral palsy I don’t have the luxury of pretending covid is over, nor do others living with chronic illnesses. Not to mention the US healthcare system is ill prepared to handle a major global pandemic and the long term after effects that we are currently seeing. I say this as a person who is currently under the care of an infectious disease doctor for antibiotic resistant urinary tract infections. Just a piece of advice, protect yourself and your loved ones by Wearing a mask.
I also believe that Biden should no longer be supporting Israel with weapons. I support the people of palestine. Although I realize undoing long-standing alliances is easier said than done.
With all that said, I can not support Donald Trump given what he stands for. He openly mocked a reporter with cerebral palsy. Holds vile attitudes toward women. He proudly takes responsibility for the overturning of Roe vs. Wade.
In the 2 years since Roe was overturned I have been troubled that some in our government feel they have the right to control women’s reproductive rights and healthcare. In part because I have a mild bleeding disorder that is similar to hemophilia. As a result I experienced menstrual cycles that lasted months at a time. This greatly impacted my quality of life as I also had extremely bad menstrual cramps. After many years of my doctors doing their best to get my bleeding under control with medications used to treat bleeding disorders, along with oral contraceptives to suppress my period to no avail.
There came a point when my hematologist stated he believed my menstrual cycles were not controllable in part due to my brain injury that caused my cerebral palsy. Stemming from my premature birth. Knowing full well my underlying brain injury is permanent. I came to the difficult realization something had to give. Unbeknownst to anyone initially I started doing my own research about what my medical options were online. At this time I was 14 and knew how to use google. It was at that point I discovered what a hysterectomy was. Given I was told that my bleeding disorder was genetic and can be passed on. I didn’t like the thought that if I had a daughter, she may experience the difficulties and pain that I was. I should also mention that during this time my muscle spasms caused cerebral palsy were becoming difficult manage with oral spasticity medications and we were looking into if an implanted medication pump was an option as it is delivered directly into the spinal cord via a implanted spinal catheter as opposed to going through the bloodstream. It is called a baclofen pump, at age 17 I had my first pump placed.
I came to the emotionally challenging conclusion that in my case a hysterectomy was my best option. I sat on it for six months before going to my mom who had no idea I knew what was. We then went to my gynecologist who we had been working with closely to get my menstrual cycles controlled, I shared with her the conclusion i had come to, I had just started a new medication to suppress my period, She asked my to wait another six months and if i was still bleeding she would support my decision to have a hysterectomy.
There was some reluctants given I was 15 at the time. Also sadly there is a dark history in this country of forced sterilizations of people with disabilities. Fortunately my doctors took the time to truly listen to me and realized this wasn’t the case and it truly was a quality of life issue. In 2004 two weeks into my freshman year in high school I had a partial hysterectomy. Only leaving in my ovaries. At the request of the hospital my mom did have to sign the consent form given was under 18. Therefore both my and mother’s signature was on the consent form.
I share all this because I want all women to have the freedom to make their own choices about their own bodies with their doctors. Our government should have no say when it comes to that. This will not be the case should project 2025 take effect.
I also want all LGBTQ+ people to have access to gender affirming care and to be able to be their authentic selves .
Joe Biden did a selfless thing on Sunday by stepping aside and endorsing Kamala Harris. Thanks to him we are well on our way to having our first female president. It is up to us to do the rest this november
As I write this I am completely aware, that this will fall on deaf ears with some: Those who have willfully have chosen to ignore the realities of covid. People with chronic illnesses like myself do not have that luxury.
I am writing this on the eve of mom and I getting our 5th updated covid vaccine. Mom is stocking up on snacks, food and cannabis. As we know we will feel under the weather for a few days, all of which is normal for any vaccine. The most annoying thing will be the my arm will be sore. This is because I rely heavily on my upper body strength to compensate foe my legs.
With all that said I would much rather feel a little under the weather because of a vaccine that offers some protection,, decreasing the risk getting severe and life threatening illness. Obviously nothing is 100%.
We do know mask wearing and vaccines are successful slowing down the rate of spread of illness. This why I wanted to take this opportunity to encourage everyone to do so.
As I said i am completely aware there are people that won’t. People that refuse to wear a mask, send people like me that have disabilities and chronic illnesses the message that we are disposable and are not as worthy.
I have sadly always known these fucked attitudes existed they have just been more in your face since the covid19 pandemic.
I am also troubled that the rates of RSV that have lead increased hospitalization among young children. Overwhelming pediatric icu’s. Mask wearing would also slow the spread RSV and other viruses. So it genuinely baffles me that there are people that don’t do what they can to protect our little ones.
Please do your part
Wear a mask
Get vaccinated ~ boosted
And one side note~ That is just as important vote if you haven’t done so already
Trigger warning: Suicide discussed if you struggling please reach out for help ithere is no shame in seeking help and support. Please know you are not alone ❤️ there are people that want to help. If you have experienced a suicide loss please know you’re loved one’s death is not your fault. . Suicide is not 100% preventable. Although I still encourage people to seek help and there is no shame in doing so. Suicide occurs for multilayered reasons that very are complex aand complicated.
988 Suicide & Crisis Lifeline The resources and information on this page are designed to help states, territories, tribes, mental health and substance use disorder professionals, and others looking for information on understanding the background, history, funding opportunities, and implementation resources for strengthening suicide prevention and mental health crisis services
FRIENDS FOR SURVIVAL
We are a 501(c) (3) tax-exempt charitable, national non-profit bereavement outreach organization available to those who are grieving a suicide death of family or friends. We also assist professionals who work with those who are grieving a suicide tragedy. Friends For Survival, organized by and for survivors, has been offering suicide bereavement support services since 1983. All staff and volunteers have been directly impacted by a suicide death https://friendsforsurvival.org/ Offering Help After A Suicide Death (916) 392-0664 Toll Free: (800) 646-7322
The last few days have been particularly difficult. I am writing with a heavy heart and anxious mind. I have a family member who’s mental health and well-being is in crisis. I have been feeling as if the other shoe is going to drop if something does not change soon. The cold hard reality is you can’t force someone into treatment for the disease of alcoholism or other types of mental health treatment. Nor is suicide 100% preventable as we would like to believe like many suicide loss survivors I have at times struggled with questions of ‘Is there anything I could have done differently?” That could have prevented the nightmarish reality of my father dying by suicide in 2012, Deep down I know I couldn’t and understand that sadly I know that our estrangedment was necessary to protect myself from his unhealthy behavior.
It is heartbreaking to know that my cousin is in such emotional pain he feels it would be better to take his own life. It takes me back to when my dad first walked out and the reality of his bipolar illness was finally acknowledged, and I had no idea what to do other than the overwhelming feeling I had to protect myself given the way his life was spiraling out of control. On a side note based on my experiences in childhood it is best to be as honest as you can with children about a family member’s mental illness or suicide death in terms that are age appropriate denying the issue only compounds the issue later on.
In the years since my dad’s suicide I have done what I could to educate myself and advocate for those of us who live with mental illness and have experienced a suicide loss. I will admit as a person who lives with severe anxiety I sometimes feel like my efforts are insignificant and a drop in the bucket to what our culture truly needs in terms of the mental health crisis that our nation and world is facing. Particularly given I am not a mental health professional, sometimes I don’t know what the fuck I am doing. As I write I am not at all sure what the completed piece of writing will look like. If I am being honest I am writing as a means to manage my anxiety and process my trauma. As difficult as it is to write about the pain of having a family member who is struggling and feeling absolutely powerless as to how to help and knowing deep down a tragic outcome may be inevitable.The circumstances are already tragic although he still living,I realized i needed to do something healthy and constructive, Given my neurological systems trauma based responses it was clear I couldn’t avoid my feelings even if i wanted to doing so would only make things worse. We are experiencing a mental health and cultural crisis the likes of which our society and world has never seen. In years since Trump was elected I have wondered how we got here as a country and society.Although Trump lost the election and the election was free and fair as it was probably our nation’s most scrutinized elections: yet nearly half the country has fallen hook line and sinker for Trump’s election lies. As I began writing this the story of Paul Pelosi being attacked during a home invasion had just broke The hammer wielding attacker uttering the phrase ‘where ‘s Nancy? Which was also chanted during the violent insurrection that took place on January 6th although some have chosen to whitewash the violence of that day, calling it a visitors day.
Denial is a very dangerous and deadly thing in terms of mental illness as I watched how my father’s life ended under the tragic circumstance of suicide. I deeply fear I will have to live through a tragic outcome with my cousin that he will not be able to come back from. The collective denial of what used to be the Republican Party: has become the extreme cult of trumpism and has had violent and deadly consequences for world, society and culture. It still boggles my mind that Donald Trump was able to be elected and cause such chaos within our political system and put our very democracy at risk. The notion that we had a president that has multiple accusations of rape and his vile attitude towards woman has been well documented, you need not look any further than the access Hollywood tape. Disgusts me. He has espoused hate and prejudice towards every minority group. The sad part is that is why he got elected. He certainly was not qualified, not to mention malignant narcissist who is very emotionally unwell.
Now we are living in a society where a whole political party is trying to dismantle fundamental human rights and vital social support. Many people do not have access to adequate healthcare which has only got worse since the pandemic. Some people have chosen to believe the pandemic is over. It is not in any way over this denial of reality that is putting everyone’s health at risk. Particularly those of us who live with chronic conditions, The Covid-19’ pandemic will affect our world for generations to come in ways we can’t possibly fully understand yet. This narrative that everything is suddenly back to normal is just flat out false., although I suppose it is easier for some to live in denial than fear the unknown. For me I would much rather live in reality then live in a world of denial at least that way I can do what I can to bring about positive changes in our society. We are in desperate need of quality mental health services and support. We already did not have enough pre pandemic. The need has only grown exponentially. I recently found out through the experience of a friend that if you need in patient psychiatric hospitalization and you have medical equipment such as a wheelchair you can’t be admitted to a psychiatric as the wheelchair is considered a liability to the hospital,I later confirmed this with my psychologist, she said she has seen patients with something as simple as a CPAP machine: which is used to treat sleep apnea: wait in the er for a very long time because the CPAP Is considered a liability. There are very few medical/ psychiatric beds available meaning if you have any chronic condition you may very well be shit out of luck. This is an incredibly ableist view and policy. Given that most Americans are not the ideal specimen of health.
This all while we are living in a backdrop of people who would rather tear things down in terms of social supports and services instead of building things up, Having the attitude that people should be able to pull themselves up by their bootstraps is an extremely callous and cold view of the world. It is a denial of the human struggle, That is real even if it differs from your own life experiences. With ten day left until the midterm election I hope with use the voices as well the votes to reject the denial that has come with trumpism. Because as i said denial is a very dangerous thing
Recently I realized someone I really cared about only sees my disability when he looks at me. It is sad when you get to know people who don’t have a disability: you hope they see all of you as a person. As your disability is only part of you. It is not your authentic being or true core self. People have many different life experiences and aspects to their authentic being. I am many things, Made up of multifaceted parts of my personality
I am a woman who is very concerned about what is happening in this country when it comes to roe vs wade . I never thought in this country we would regress so far and what had been settled law since 1973. Giving women the right to have safe access to abortion. Is now no longer a legally protected right In at least 13 states woman are no longer able to safely to access abortion at any point in a pregnancy Even when a mothers life becomes at risk or in the instances of pregnancy loss doctors can no longer perform D&C ‘s to clean out the lining of a womans uterus if after a pregnancy loss which is an essential part of reproductive care to prevent sepsis if any tissue of the nonvible fetus remains this puts womens lives at risk . There many life circumstances that lead woman to the difficult decision to end a pregnancy extreme poverty, the pregnancy is a result of rape or incest, no woman who has indured such a trauma should ever be forced to carry a child against her will. This is also true for women in abusive relationships as a pregnancy has the potential to to cause the violence to escalate at the hands of the abuser.
It is also important to say there are also times when wanted pregnancies are found to have abnormalities that are incompatible with human life and the difficult decision is made to terminate the pregnancy. Some people would like to wrap things in a neat and tidy little bow and life is not that simple.
I myself as a teenager had challenges in regards to my reproductive health as I had difficulties with my menstrual cycles as they were very prolonged. After some investigation on the part of my gynecologist it was realized I had a condition called von willebrand’s disease. It is a mild form of hemophilia. I was 13 at the time my von willebrand’s was discovered. By that time I had struggled with my menstrual cycles for three years as I started my periods at age ten. In spite of my von willebrand’s being mild my periods continued to be very problematic to my quality of life. Being that I would bleed for months at a time, in spite of being on medication for the von willebrand’s and oral contraceptive to regulate my cycles.
At age 14 it was discovered I had underactive thyroid and primary pituitary failure that was a result of my brain injury, the same injury that caused my cerebral palsy as I was born at 32 weeks. During this time the issue of my pituitary was discovered I began to suffer migraine headaches. After completing an mri my doctor became concerned I could have a small tumor at the base of my pituitary gland.
It was shortly after this discovery that I remember a notable conversation with my hematologist that changed everything in my mind in ways that no one knew not even my mother knew til later. He said my pituitary issue and von wiliebrands were like the perfect storm if it wasn’t for my brain injury my periods would become more manageable given my von williebrand’s was such a mild case. I should say I by the time my von williebrand’s was discovered I would have had around 10 or 11 surgeries with no sign of any bleeding issues it was only discovered after specialized testing was performed. So it made perfect sense to me that my brain injury is what had made my periods impossible to control.
It was at this time unbeknownst to my mother I started to Google what my medical options were In terms of managing the bleeding as a was starting to realize I couldn’t not continue to live with the bleeding the way it was. particularly because my muscles spasticity was beginning to also worsen during this time and oral medication were becoming less effective. Von willebrand’s disease is a genetic disorder and there was a 50% chance I could pass on the von willebrand’s to any children I may have this coupled with the concern for what happened if I did get pregnant not just to my health but also the health of my unborn baby I didn’t feel comfortable with the idea that my child may have to endure the medical things that I had. I always tried to make the best of it but there is no denying it took a physical and emotional toll on me. It was at age 14 I realized children weren’t in the cards. This wasn’t an easy decision to come to for me as I have always loved children: I was aware there was other ways to be around and help children. Although I wasn’t sure what that would look like for me yet.
Meanwhile I continued my Google searches unbeknownst to anyone. It was during one of these searches I first discovered what a hysterectomy was. Being fully aware it was permanent I sat on it for about two or three months, before I went to my mother and told her about my Google searches and my coming to the conclusion children were not in the cards for me. I also stated at that time if push came to shove I was more than willing to have a hysterectomy. As I realized the toll on my physical and mental health was becoming too great for me to bear, and intervention was very much necessary to protect my quality of life. Needless to say she was stunned. It was shortly after this I had a visit with my gynecologist I brought up my conversation with my mother and hysterectomy being an option for me. After some discussion my gynecologist asked me to wait 6 more months as she had just started me on the Depo-Provera shot to try to stop me bleeding and It can take up to six months for menstrual cycles to settle after changing medication. If I still was miserable and wanted to have a hysterectomy she would support my decision and perform it.
I wanted to stress that my gynecologist got to know me well over a one or two year period. She was also very aware I was struggling with my spasticity. I was considering the option of having a baclofen pump put in to better control my spasticity. My physical medicine and rehabilitation doctor was nervous about doing so given my history of seizures as well as the other major risks the pump carried. The pump does very much carry life threatening risks. Around that same time I began to experience abdominal spasms that my Pm&r doctor was concerned were brought on by an ovarian cyst that was being overlooked. He wanted me to have a consultation with the gynecological specialist at the hospital as he was hoping they would do a laparoscopy to check for a cyst.
So a month or two later myself, and both my mom and dad went to see the specialist as he had asked. It was clear from the get go however they were concerned I was doctor shopping for someone to do the hysterectomy which wasn’t the case. Granted I do take into account they were concerns given my age. There was the reality that there was a dark time in American history when the disabled were sterilized against their will, which is not at all ok. Having said that, I was in no way forced into considering a hysterectomy and there was also the fact that I had been bleeding for close to six months by the time I came to see them. And in the bigger I had struggled with my menstrual cycles for nearly 5 years. Which weirdly they seemed to gloss over as if it were nothing significant. We left with them saying I shouldn’t make any reproductive decisions until I was 21, they also did not want to perform a laparoscopy which is the whole reason my pm&r doctor sent us to see the specialist. He himself later apologized for sending us there. Saying I thought they would help you.
A short time later I had a follow up with my gynecologist and we shared what had happened. She agreed to do the laparoscopy to ensure that nothing was being overlooked. It was scheduled for a month or so later. I didn’t have an ovarian cyst in fact my reproductive organs looked perfect. It was realized that my abdominal muscles did not relax under full body anesthesia and my gynecologist had no doubt how much pain and discomfort I was experiencing due to my spasticity. It was apparent that we would need to investigate whether the baclofen pump was a realistic option for me more seriously. A few weeks after my laparoscopy I had a follow up appointment with my gynecologist, By that time I had been on Depo-Provera for six months with no improvement in my bleeding. So after much discussion it was decided I would indeed have a hysterectomy, so two weeks into my freshman year of high school I had the surgery when I was 15. At the time I had been on my period for 8 and a half months.That was over 18 years ago.
As difficult as that decision was, it was the right choice for me. Particularly given what I have dealt with in my adulthood having lost a father to suicide in 2012, my great grandfather also died by suicide, Given this am grateful I am that my gynecologist took the time to get to me and respect my right as woman to make decisions about my own body. Being that we are dealing so much in our culture and so many children are struggling I would much rather give my time and attention to a child who is already here in the ways that I can rather than bring one into the world. It my hope that we do all we can as a society to protect a woman’s right to choose.
Final thought when you meet a person who lives with a disability stop to realize that their disability is only one part of their identity as we as people are made up of many intersectional identities.
Wanted to reshare this just in case anyone wants to participate as I just finished Megan devine’s writing your grief course yesterday . It was wonderful experience. I am very grateful I took part in.. That not to say it wasn’t emotionally challenging and tiring That is just the nature of grief work.
Originally written for writing your grief course done by refuge in grief in October 2022 . Day 30 of 30 time for a long self care weekend❤️
Day 30.
This will be short and sweet, as I am extremely grateful for the last 30 days, it would be disingenuous of me if I didn’t admit how tired I am.
So here it goes.
I will do my best to offer myself more kindness.
And be less critical of myself as my body, heart and mind have been through hell and back.
I will offer myself more self care. Without fear I will be judged by others because they have not lived through what I have. And may not understand that this self care is necessary to survive ( This is easier said than done particularly sometimes with doctors.]
I will forgive myself when I fall short.
I will give myself these things for no other reason than I deserve them.~ As do we all❤️
Christinesjourney8 ~ Instagram blog 