When someone sees only your disability

When someone sees only your disability

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.