I wrote this letter below a year ago, at a time in my life where I was numb to the fact that I was diagnosed with HD. I'm sharing my story now. I think it's essential to see the struggles and obstacles that I went through to understand better who I am and for you to know the core of my passion.
My goal is to show others that they aren't alone in this. Others, too, have had a rough upbringing and can fight through this horrific diagnosis.
*****WARNING THIS IS POSSIBLY TRIGGERING TO SOME - PLEASE READ AT YOUR OWN RISK*****
Without further ado here is the story of me:
The story of who I am….hmm….seems cheesy but factual. It's taken me about four years to get to this point, but I need to do this to free myself and hopefully, in doing so, help others.
I have wanted to share my story with my HD family and community, but it made me feel so vulnerable. However, after experiencing the love and friendships via our support groups, I want to share my story. It will help you better understand my past and my struggles to become who I am today. I admire all of you that have been so open and raw with your journey. I thank you for showing me that no matter my story, no matter my struggles or misfortune, you will be there to support me.
I suppose if I'm going to do this, I am going to overshare and tell you my whole life story, so sit back, relax and enjoy the read.
My name is Jen, I'm 35 years old, and I'm married to my best friend, Michael. We have been best friends and neighbors since we were seven years old and have dated since our senior year in high school. We have been together for thirteen years as of July 23, 2020, marked our 13th wedding anniversary. I also have a little boy Dexter (our kitty) that we adopted a few years ago.
As a child, I lived with my mom, stepdad, and brother. My brother and I are close as we are seven years apart and did everything together. My mom was verbally and physically abusive to me from 7 years of age-22 years of age, and I did my best to shield/protect my brother from her. She would do awful things (I will spare you the details) to me every day, which is where I started my anxiety and self-harm. My mom, I'm sure, has her demons that she is dealing with, but to me, that is no excuse to treat your child so poorly that it causes brain damage.
I have had several horrific things happen in my life that has caused me to have PTSD. Instead of sharing every single story and drudging up trauma I'll just bullet them, and we can continue with my story:
I was verbally, mentally, and physically abused, as you know from my mother.
My stepdad never stood up to protect me as he was also getting verbally abused by my mother.
I was very friendly with boys growing up, and I spent more time in school learning about boys than I did actual schoolwork.
I worked from the time that I was 13 to get out of the house.
I was robbed at the bank that I worked for.
I lost my first love, who died from a drug overdose. His current girlfriend blamed me for his death. I had chosen my husband, Michael, to have a stable relationship vs. staying in an unhealthy one with my first love. He loved me and would profess his love of me to her - always. She told me that I could have saved him. I took that personally, and it sent me into a downwind of emotions and self-harm. I love him and pray to him to this day, but I know now that even if I chose him, there is no way of knowing that the outcome would've been any different.
I was a cutter; I didn't do it for the attention. I did to alleviate the pain in my head and move it to someplace else. I am doing much better, but I still don't touch the instruments of choice that I used because it does trigger me and reminds me of the relief I felt.
I was molested from the time that I was 3-14 from my uncle.
My real dad was out of my life from the time that I was 7 – 26 when I tried to reach out to him to rebuild the relationship, but I was rejected another three times. I can tell you it's more painful as an adult to be rejected than as a kid.
My brother moved to NZ the same year we decided not to have kids, received the HD diagnosis, and resigned from my job.
For the most part, that is a summary of my childhood. There aren't many happy memories that I have from childhood to about sixteen years old. Then I started to speak out more for myself and began to date Michael, who rescued me from so much more than he will ever know. Michael and I got married when we were 22, we bought a house at 25, and now we are enjoying the life that we have made her in our home.
We decided fairly early on in our marriage that we weren't going to have kids, we had both raced our younger siblings and I although I didn't know if I had HD or not at that time we knew there was a potential risk (50//50) of passing it on to a baby. That's where Dexter came into the picture. I needed something to cuddle and love with all the hormones and emotions I was having.
Now, I suppose I can finally talk about HD…believe it or not, but the things that happened in my childhood are much easier for me to tell you about than this. I wish I were stronger – I just need to deal with what emotions may come with sharing this with all of you.
I had learned about HD when I was about 16 years old. My grandma, who was more like a mother to me, started to act "different" around us. I couldn't pinpoint it but knew that she needed to go to the doctor. I remember taking her and just waiting for the results. Once we received the positive results, my aunt and I researched HD, and at that point, it was clear. My great-grandma had HD as well. My great-grandma had died several years before that for what we thought was dementia, amongst other things. I was a kid, so I'm not entirely sure, but now as an adult, I know it was the late stages of HD. From the time that my grandma was diagnosed she didn't take care of herself. She didn't go to appointments... she didn't take medicine. Back then, it wasn't talked about. No one had much information to share or provide to her or the world. As time passed, she got worse and worse. She would get pulled over for being drunk, but it was just her symptoms of HD. She was a fighter. She DID NOT let HD run her life. She did what she wanted. I get my stubbornness from her, but I wish that I was the fighter that she was. She is my hero – she never complained, never showed that it got her down even when she was having all the awful symptoms that come with this heartless disease. My grandma died when she was 63, and that itself was a traumatic story. My aunt and uncle hid her death from my family because of an issue with them and my mother, so they had my grandmother cremated and a service/obituary in another state so that we couldn't find out that she had died. I had horrific nightmares until I finally had to buy my own grandmother's death certificate to prove that she was, in fact, gone.
After doing the little research available for my grandma, we learned that so many other family members were at risk, and from that point, I was very ignorant to the fact that I likely was going to have HD. I didn't let it impact me, but it was always in the far thoughts of my mind.
Most of the things that happened to me were going while working and living my life as a "normal" 20-year-old.
Around the time I was 23, my mom started showing signs of chorea, very minor more like twitches. She was 43 at the time. She didn't believe us that it could be HD, but I was insistent that we go to a neurologist specializing in HD. She unfortunately, tested positive a few weeks later with a CAG of 44. At that time, it sunk in that if mom has it, my little brother and I could have HD as well. It was scary. My mom is still with us – she is now 55, and in the mid to early late stage.
My mom isn't the type to research or look into precisely what is going to happen to her. I was her caregiver in the early years, but at some point, it was too hard to see her. I was starting to see myself in her, and I had moved to Connecticut. It was too much for me to travel and take time out of work to take her to her appointments. My stepdad stepped in. She doesn't understand that she isn't going to get better and thinks that the medicine will "cure" her. She has been off and on with her medication because she can't afford it once her insurance denies it. She also has never worked a day in her life, so she doesn't get any assistance, no points towards SSDI - NOTHING. She doesn't qualify for a cent. She has been able to use some HD charities for medical help, but they are only able to pay for so long. She just didn't doesn't care to educate herself or care for herself how I would imagine or expect her to, and I get very upset by most of her decisions. This is another reason I have had to distance myself. My mother is the only living relative that I have, and she has chosen not to be open with me about her struggles with HD. I have tried to go to her with questions, concerns, or just fears, and she changes the subject.
My brother today is 28, he is healthy and lives in NZ - He moved there about three years ago after meeting a fabulous girl online. Michael and I were lucky enough to be able to go there for a month last August for their wedding. It was the most beautiful country and wedding. While there, we discussed in detail how he was doing and what his thoughts were about getting tested for HD. He did go to a genetic counselor, so they are aware that he is at risk and has a family history of HD. We discussed if he was going to move forward with the test. I told him that I would support his decision, but I wanted him to know that all the questions and concerns he has now, he will likely still have after the results. There is no time frame or plan that you can put in place with HD. If you forget something or trip, you'll question if it's HD. He has decided not to get tested at this stage in his life. He knows what he and his wife want in the future. He knows the career that he wants, and as long as he is healthy, why add stress. If something happens, we can take it from there, and I will be there through it all. I don't talk to all of my family since what took place with my grandmother, so I don't know if anyone else has HD.
So I guess that brings us to me. I like how I've tried so hard to avoid this part.
Well, here it goes:
In 2015 on December 28, Michael and I took my mom to her neurologist appointment for her HD checkup. The doctor asked if we had decided to get tested for HD and we had told him that we weren't going to get tested because we had already decided not to have kids. It was too much for me emotionally to find out because I didn't want it to control my life. He then proceeded to tell us that it was known that HD happens a decade sooner. Since my mom was showing outward signs at 43 (unclear when the cognitive/motor symptoms started), so that meant that I would likely show signs in 3 years. Michael and I started crying and decided that we should take the test so that we could properly plan. The next day I receive a call from a company that comes to my home to take my blood work and received the FedEx supplies for him. I was so overwhelmed. The blood work was scheduled on December 31, Happy New Year to me. From that point, it was rush rush – wait wait – it took a month for the results to come in. By that time, I was beside myself, and work took a toll because the results were all I could think about. Michael finally called and followed up with the results because I was having panic attacks and depression. We received the results after office hours on Thursday, the doctor called our home, told me he was sorry I tested positive with a CAG 43 and to call me when I have symptoms - then hung up. That day our lives forever changed.
From that day on, Michael has never been the same; he has been very emotional through this process but also my rock. He is truly so strong. I always told him that if I tested positive, I would ask him for a divorce. I wanted to allow him to have an out, a way to leave the marriage on good terms so that he can have a better/happier life. He knew what to expect. He knew my grandma and my mom. He was so hurt that I asked but understood. In April, I found out that Connecticut had an HD wing in one of their hospitals that would've tested me anonymously and had a team of doctors support me from the test result and beyond. So, I essentially called them so that I could start to associate my name with HD and get the mental help I needed because I had lost myself since the results in January. I was with this doctor for about two years, but throughout that time, it was an awful experience. He was a pill pusher, and since I am hypersensitive to medicines, I was going through several different medications week after weeks with terrible side effects. In 2017 I was taken out of work on FMLA by the doctor, he saw I wasn't getting better and wanted me to go to Outpatient Program at the hospital three times a week. I did find it very helpful, but I still was very depressed and not getting better regarding anxiety and day to day living. So I had been on medicine and going to the program and seeing a therapist – it is now around August, and the FMLA for my claim is only suitable for 12 weeks, and since I wasn't getting better, he was writing back to work. I had to resign from a career I had for 11 years. Yet another trauma, and another heartache and loss. He never diagnosed me with HD. He said I was pre-symptomatic and suffered from PTSD even though I tried to explain to him that I wasn't having any issues with PTSD for several years. Over time, I ended up going to the outpatient program three times. I wasn't able to drive due to negative reactions to my medicine. I was hospitalized for ten days due to suicidal thoughts I had from coming off of Seroquel. After my stint in the hospital for ten days, I wasn't able to leave until I did the 3rd run with the Outpatient Program and ECT (electroshock therapy). I was not ok with this, but I had no choice. Over four months, I had a total of 16 ECT treatments with no end in sight. Michael and I tried to address our concern, but it fell on absent ears. It was at that time that Michael looked for a new doctor, and for an HD Center of Excellence. We wanted the best treatment possible. I now have a fear of hospitals and anesthesia, due to the poor medical decisions.
In April of 2018, I went to MA General to see Dr. Hersch, and on my first visit, he diagnosed me with HD and assisted with my long-term disability and SSDI. It was a complete 180, and I was blown away. I was devastated by the diagnosis and so relieved that someone listened to me and all of my concerns. Today, I am on disability (took three denials and two years) and trying to learn to live with all of the symptoms as they occur.
To this date, I have experienced:
Cognitive issue – forgetful, can't complete tasks, slow comprehension, etc.
Incontinence
Clumsiness
Depth perception is off
Twitches
Dystonia
And more that I'm sure all of you are aware that comes with it.
Well, I did my best to tell you my story, but I'm sure there are some errors here and there - dates may be off, but that's my story.
The good the bad and the ugly.
It’s hard to read what I wrote a year ago. I am not the same person I was when I wrote this. I’m stronger and more open (believe it or not) regarding my diagnosis of HD. As you can see, it wasn’t very detailed when we go to the part of my diagnosis. I shielded myself for protection. Not a healthy thing to do – but it kept me safe. We are all on the journey together, and I hope by reading this, others can relate to some degree and feel more comfortable sharing their journey that brought them to where they are today.